Quia



The Fire Within

A Renaissance

Detna K. Kacher

To family, friends, and medical professionals—all who helped fan the fire within—this burning desire to live.

Contents

Preface--------------------------------------------------------------------------------------------------------vi

PART ONE

Chapter 1: The Color Yellow--------------------------------------------------------------------------1

Chapter 2: Questionable Diagnosis------------------------------------------------------------------3

Chapter 3: The Life in Your Years------------------------------------------------------------------- 6

Chapter 4: Not All Organs Are Created Equal--------------------------------------------------10

Chapter 5: Verbal Reciprocity and Moral Support---------------------------------------------12

Chapter 6: There Are No Ants! (Pruritus)--------------------------------------------------------15

Chapter 7: The Sky is Falling------------------------------------------------------------------------17

Chapter 8: One Day at a Time-----------------------------------------------------------------------21

Chapter 9: Reprieve------------------------------------------------------------------------------------23

PART TWO

Chapter 10: Blind Fortitude--------------------------------------------------------------------------26

Chapter 11: Arduous Journey-----------------------------------------------------------------------31

Chapter 12: Painful Revelations---------------------------------------------------------------------34

Chapter 13: Running into Realities-----------------------------------------------------------------37

Chapter 14: End of the Road-------------------------------------------------------------------------41

Chapter 15: "Dat’s Too Much Blood"--------------------------------------------------------------45

Chapter 16: Monkey on a Leash--------------------------------------------------------------------48

Chapter 17: Information Overload!----------------------------------------------------------------53

Chapter 18: Last Laughs in Dallas------------------------------------------------------------------58

PART THREE

Chapter 19: The Choice---------------------------------------------------------------------------------61

Chapter 20: Putting Your Life on Hold-------------------------------------------------------------63

Chapter 21: Changes------------------------------------------------------------------------------------67

Chapter 22: Wind Beneath My Wings--------------------------------------------------------------70

Chapter 23: "Step on a Crack"-------------------------------------------------------------------------72

Chapter 24: The Call------------------------------------------------------------------------------------ 75

Chapter 25: Destination: Dallas----------------------------------------------------------------------78

Chapter 26: Cocoon------------------------------------------------------------------------------------- 82

PART FOUR

Chapter 27: There is no Bile---------------------------------------------------------------------------85

Chapter 28: Over the Rainbow-----------------------------------------------------------------------88

Chapter 29: Where's the Cola?------------------------------------------------------------------------92

Chapter 30: 14 Roberts----------------------------------------------------------------------------------95

Chapter 31: Hurdles-------------------------------------------------------------------------------------99

Chapter 32: Who's That Yelling?------------------------------------------------------------------- 104

Chapter 33: Twice Blessed at Last------------------------------------------------------------------107

Chapter 34: Where's My Daughter?--------------------------------------------------------------- 113

PART FIVE

Chapter 35: There's No Place Like Home--------------------------------------------------------117

Chapter 36: Strictures and Stents-------------------------------------------------------------------121

Chapter 37: Norman Diamond: Radiologist Extraordinaire---------------------------------127

Chapter 38: Life Flight!--------------------------------------------------------------------------------130

Chapter 39: Mean Medicine------------------------------------------------------------------------- 134

Chapter 40: Wood Works---------------------------------------------------------------------------- 139

Chapter 41: The Fire Within-------------------------------------------------------------------------144

Epilogue----------------------------------------------------------------------------------------------------149

Character Synopsis--------------------------------------------------------------------------------------150

How wisely fate ordain'd for human kind

Calamity! which is the perfect glass

Wherin we truly see and know ourselves.

~Davenant

1983: The drug Cyclosporine was approved by the United States Food and Drug Administration for use in organ transplant patients for its distinctive ability to suppress

the immune system. Before its use, surgeons could transplant live organs from one body to another, but the body's immune response resulted in rejection of the transplanted organ triggering infections of the donor tissue and usually death. The discovery of cyclosporine brought about a major change in the success and longivity of organ transplant receipients. To those, like me, that change has made all the difference.

The Color Yellow

Disease often tells its secrets in a casual parenthesis.

~Wilfred Trotter

December 1984: Both of the children were sick with the flu. Every night for the past week I hustled between their rooms taking temperatures, giving medications, and making sure they drank plenty of fluids. The mental and physical exhaustion that stemmed from around-the-clock medical attention to my two small sons left me feeling like limp lettuce. The intermittent itching I had experienced over the past several years proved relentless that particular night. I finally flopped on the couch and quickly fell into a restless, superficial sleep. The itching grew so widespread and intense that I couldn’t bear for the lightweight quilt to touch my skin. I'd learned from prior experiences that if I gave in and scratched, the itching would grow more acute, burning and spreading like fire ant bites. Could the doctors be right? Was this symptomatic of allergies? Or could it be as one doctor said, "Just nerves"? I wasn’t the nervous type, but I was quickly becoming the frustrated type. An ominous feeling washed over me. The doctors were mistaken. Something was wrong.

That night I once again slept on the couch close to my sons’ rooms so I could listen for persistent coughs or little voices calling for “mommy”. The attachment and concern I felt for these two little people was enormous. I come from a close, loving extended family. We’re always demonstrative with our affection for each other and I knew from an early age I was cherished. My parents, grandparents, aunts and uncles doted on us. Just as some adults perpetuate the cycle of abuse that they suffered as children, my brothers and I perpetuated the cycle of doting when we had children of our own. In my world this was normal. My great uncle used to say that entering a room with children was like entering a room full of sunshine. When my children were ill, the brightness of my very existence was threatened. Thankfully, for the first time that week they rested quietly and seemed better the following morning. The relief! They were on the road to recovery. I, however, felt terrible—tired and achy. Even getting up and walking required a certain amount of self-inducement.

I must have caught the flu from the children, I resignedly thought. I cannot have any more down time, I told myself. Errands had stacked up and I needed to devote time to my business. The business, which I started from our home seven years earlier, involved manufacturing protective lead aprons for hospital radiology departments. I admit, it’s not an ordinary business, but after working in a supervisory capacity in one of Houston’s medical center hospitals I recognized the need for better-fitting lead apparel to protect health professionals from radiation during fluoroscopy. The companies that sold lead aprons were all up north and frequently difficult to connect with, plus delivery for new aprons was often slow. One day I took a hopelessly big, ill-fitting lead apron home. I made a pattern that would cover the upper chest and thyroid and still reach the knees. After donning latex gloves, I stripped off the old nylon material that covered and protected the lead vinyl then recut that lead to the pattern. Hancock Fabric’s had a nice colorful sport nylon material that I used to cover that sad apron. From the time I brought the new refurbished apron home to the hospital it was a hit in our research and heart catheterization lab. Soon I was bringing home more aprons to modify and recover. Then the hospital’s radiology department called and asked if I would alter and recover some of their aprons. The next thing I knew I was buying a huge industrial sewing machine and purchasing rolls of lead vinyl. Oh, the beautiful colors of these aprons. I wasn’t going to make any of the drab green or gray-blue aprons that were so typical throughout hospital radiology departments.

After my husband and I had children I didn’t return to the Cardiovascular Research Lab. Instead I stayed home with the babies recovering and making lead aprons. As the children grew, so did the business. Eventually I hired two seamstresses and a high school student to do cutting and cleanup so I could still have time with our boys who were now four and seven years old. I focused on giving the hospitals the kind of attention and service I always wanted when I used to order lead apparel and other medical equipment and supplies. Since the children had been sick, though, orders from hospitals were beginning to back up and my workers needed guidance and instruction. And now I felt ill.

The ringing phone encouraged me to get moving. It was mom, my advisor, my protector, and frequently my guardian angel, calling to say that she was sending chicken soup via dad. Fantastic! Medicine was on the way. I quickly washed my face and brushed my hair. It wouldn't do for dad to see me looking tired. He always reported his concerns back to mom. Sweet man. That was his job I figured. Mom's job was to let him know when to worry. They were good at their jobs. Hmmm . . . maybe a little lip-gloss would make me look perkier. Parents! It didn't matter that I was a married woman with two children. In their eyes, I was still their little girl.

Soon the doorbell sounded. There stood dad with a large pot of soup in hands. I gratefully accepted the kettle from him at the threshold of our front door while cautioning, "Don't come in, dad. I wouldn't want you to be exposed to our germs."

"So, how are the kids?" he inquired. Without waiting for an answer he stated, "You look bad. You aren't sick, are you?" Here it comes, the parental inquisition.

"Just a little weary, dad. You know how it is—a week with sick kids. Whew! Things will calm down now. They’re so much better this morning. Mmmm, this soup smells great. Give mom my thanks. Tell her I’ll call a little later."

Walking out in the sunlight I smiled and waved goodbye with reassuring exuberance. Suddenly dad's hand flew to his cheek as he cried out with alarm, "Oye Gavalde! What's wrong with your eyes?"

Uh-oh, his hallmark Jewish sign of dismay! My eyes?

"Oh, yea, dark circles under my eyes. I guess I am worn out trying to run the business with the kids being sick and all. You know I always get dark circles when I’m tired."

"No," he emphatically said, "not dark circles. Your eyes—they’re yellow! You need to call the doctor. Or call your mother. Yes, call your mother! Something's wrong," he insisted.

I rushed to the bathroom mirror and for the first time that week really looked at myself. "What is this? What is this?" I asked no one in particular. The whites of my eyes were unmistakably yellow. Aha! The insidious symptoms that had harassed me for years finally allowed a definitive glimpse of my stalker. Its most recent clue was undeniable and now I knew: something was wrong with my liver.

Questionable Diagnosis

Uncertainty is the worst of all evils until the moment when reality makes us regret uncertainty.

~Alphonse Karr

I was born on a Thursday, October 12th, at St. Mary’s Hospital on Galveston Island. Months before my birth, my mother had picked out the first and middle name, Diane Kathleen, in the event I was a girl. Back then the sex of a baby was a complete surprise until the birth. My mother was hoping for a girl since she and dad already had a boy. Alas, a couple of months before I was born, one of mom’s best friends gave birth to a daughter and named her Diane Kathryn (her husband’s choice, her friend revealed). By the time mom went into labor with me she still hadn’t decided on a first name. Shortly after my birth, mom’s nurse, Sister Dymphna, noticed that I had some difficulty breathing. Upon closer examination the physician identified an enlarged thymus (the gland that resides behind the breastbone) as the source of my breathing trouble. A decision was made to shrink the thymus with radiation. This was standard treatment in those days and was also prescribed to shrink tonsils and adenoids and to treat scars and other ailments. My mother was so grateful to Sister Dymphna for recognizing that I couldn’t breathe adequately that she decided to name me after her! After some consideration, mom thankfully thought it best to “Americanize” the name Dymphna. Henceforth, I’ve been Detna Kathleen.

“What a…ah…different name,” people always remarked. I didn’t mind. I always felt it made me unique. If fact, just about everybody who knew me well would say I was a unique, quirky kid (or was it "weird?"). Nevertheless, I embraced it. The name fit the personality.

That morning following my appearance of yellowed eyes I scheduled an appointment with our hometown family physician.

"What is your first name again?" the receptionist asked.

"It’s Detna. D-E-T-N-A", I spelled.

"Never heard it before. Are you named after someone in your family? "

"Yes, a Russian princess."

"Really! Well now, that is special. Fill out these forms and the nurse will call you in shortly, " she informed me.

Finally a nurse assigned me to a patient examination room and the doctor rushed through the door. He had a room full of patients today, I’d noticed.

"Hello, Dr. Tamburro, " I greeted him.

"Ms. Kacher, " he acknowledged. Then he got down to business examining me.

"Hmmm. Your sclerae and skin are jaundiced", he noted. "Have you been exposed to hepatitis recently?"

"No, not that I'm aware of."

"Have you been out of the country? Eaten raw oysters?"

"No and no."

The doctor continued his physical exam by pressing under the right lower border of my rib cage where the inferior margin of the liver is.

"Any tenderness?" he asked.

"No, everything feels fine."

"What about when I press here?" he again asked pushing his hand deeper under my rib cage.

"Nope, no pain. Feels normal to me."

Why don't I feel any pain, I wondered? If this were hepatitis the liver would be inflamed and surely I would feel some pain. Not good. Definitely not good. I should feel pain. What could be wrong, a tumor? Maybe I have gallstones. But how about "female, fat, and forty," the three "F"s for gall stones. I was too young and too thin to fit that criterion.

After the physical, Dr. Tamburro wanted to run a series of blood tests for various strains of identifiable hepatitis. Yikes—I hate needles. In fact, when I was a little kid I would run from the nurses when I had to have my vaccinations. How I ever ended up working in the medical profession originally, I can’t explain. One thing’s for sure, the experience didn’t desensitize me to needles when they were pointed in my direction.

"Relax your arm," Dr. Tamburro said, before he tied on the tourniquet. He always drew patients’ blood himself. I must admit that he was very good at it. Nonetheless, I turned my head to avoid seeing him pierce my skin.

Several days later the test results came back. All the liver enzymes were abnormally elevated, but they did rule out hepatitis A and B. Dr. Tamburro really couldn’t say what was wrong with my liver without out more tests, which he felt should be done by a gastroenterologist. A gastroenterologist is a medical doctor who specializes in digestive diseases. The liver is considered an accessory organ to the digestive system. Time to call some of my former coworkers at Houston’s Texas Medical Center.

"Hey, could you give me the name of a really good gastroenterologist?” I asked several nurses and doctors I had worked with. One name kept coming up: Ian Sachs.

The following week I drove to the Texas Medical Center for my first appointment with Dr. Sachs. As I sat in the office I realized the yellow walls and green carpet of his waiting room seemed to intensify my unfortunate complexion. My bare arms looked as though I’d gotten hold of cheap tanning lotion. I felt like a lump of old cheese sitting there and made a mental note not to wear any yellow or green for the next couple of weeks.

Prepared to wait for an indefinite period of time, I picked up a magazine and began flipping through it. Within minutes of scanning the magazine, a young man wearing a long starched lab coat came to the patient lobby and called my name.

Who is he? I wondered, the medical assistant?

"Hi, I'm Dr. Sachs," he announced as he extended his hand.

What! The doctor is calling me in, not the nurse? And he’s so young. Where's his three piece suit, I wondered? Hmmm. Nice touch—a medical center doctor who looked like a health professional and not a banker.

He led me to his office, where he meticulously gathered a patient history. Meanwhile, I surreptitiously made a careful assessment of him: dark hair, a well-trimmed beard and moustache, blue eyes (almost a hot blue, very intense), and a slightly aquiline nose. He was a man of moderate stature, conservative clothing, gentle demeanor, and youthful appearance. I liked him.

"How old are you, Doctor?"

"Why do you ask?" he inquired in an entertained manner.

"Because you look rather young," I admitted.

"I'm 35. Is that okay?" he smilingly asked.

"Well, yes, that's okay,” I consented as I quickly did the math in my head. Let’s see—graduated college about 22-years old; graduated medical school about 26-years old; completed residency and a fellowship about 32-years old. Been in private practice 2-3 years. Okay. After leaving his office I checked in with my husband, Ernie, and my parents to let them know what the doctor had said.

“What’s this doctor’s name?” dad asked.

“Ian Sachs.”

“Sachs? Ah, a nice Yiddishe boy,” dad proclaimed. He seemed relieved.

For the next several months Dr. Sachs followed my lab values. At that time he didn’t have a definitive diagnosis. One possibility was non-A/non-B hepatitis. (Today this is identified as hepatitis C, but at that time, there was not a blood test to identify this strain of hepatitis. Instead, other liver diseases were ruled out.) He was waiting to see the course and pattern of my disease. Meanwhile, I looked like a walking, talking Chiquita banana. And the fatigue! Where was my energy?

In early June after our family returned from a brief summer vacation, Dr. Sachs called with results of my latest lab work.

"Hello, this is Dr. Sachs. How was your vacation?"

"We had a great time, but it exhausted me," I said. Something about his voice made me apprehensive.

"So, how was my lab work this month?"

"Well, that's what I wanted to talk to you about. There hasn't been any improvement. I think we need to put you in the hospital and run a couple tests."

"Okay, what kind of tests?" I experienced a twinge of alarm.

"Something called an ERCP and a liver biopsy," he said. "An ERCP" he explained, "is a procedure where a tube is placed down the throat to the stomach. A liver biopsy . . .

Wow, this was sounding unfriendly.

"Whoa. I know what a liver biopsy is. Doctor Sachs, I don't like the way this sounds." A liver biopsy? I’d seen them performed when I worked in medicine and it pained me just to watch the procedure. Even though the physicians deadened the area, some patients would yelp with pain when the physician punctured between the lower ribs and snagged a piece of liver tissue with the biopsy needle. Wow—this should be happening to somebody who doesn’t mind getting poked with sharp things.

"Do you think I have liver cancer?"

He said he didn’t think so, but he named a couple of other possibilities, neither of which sounded familiar or made any sense to me at that moment. I couldn't think clearly. In fact, I thought I was going to throw up.

"Listen, Dr. Sachs, I can't talk right now. I'll call you back," I insisted.

He sounded confused and troubled by my reaction and I felt sorry about it, but I had to call my folks. At the age of 33, I, Detna Kathleen, had suddenly reverted to a frightened child. I felt sick and scared and wanted mom and dad to make everything better. What madness! It’s so easy to be independent and fearless when you’re healthy. I should be calling my husband. Instead I did what I always did when I was upset—I called my mother. Still a momma’s girl after all, I conceded.

"Hello?"

"Mom . . . mom . . . ” And I couldn't get the rest of my words out.

"What is it?" she fearfully asked. "Is it one of the children?"

"No, mom. The boys are okay, thank God. It's my lab results. I'm not getting better and the doctor wants me to check into the hospital for tests. Mom, he wants to do a liver biopsy! Yes! Can you believe it? I am scared to death. Do you think you and dad come over?"

"We'll be there in a few minutes," she said without any hesitation.

Fortunately mom and dad lived close; just within "nagging distance" we jokingly called our living proximity. Was I glad. I just needed to look into the faces of these people who had always kept me safe and healthy. Maybe then I would regain my composure and feel calm.

Once the initial prospect of being hospitalization dissipated, it was difficult for me to sit still. I paced about the house like a caged cat. A tube down my throat! A liver biopsy! Very scary. My instincts were urging me, "run . . . run away and hide," just as they did when I was a little girl and the nurses needed to give me a shot. I guess my fight or flight responses were taking over and I wanted to bolt. It didn't make any sense, for where could I go? Illness is inescapable. As I was to find out: you run, it follows. It becomes your constant, unwavering companion.

The Life in Your Years

It is not the years in your life that count, but the life in your years.

~Abraham Lincoln

June 10th, 1985: It was my husband's birthday and I was admitted to The Methodist Hospital in Houston, Texas. A hospital stay was not on our celebration agenda. I didn’t know if I was more afraid of the upcoming tests or the test results. The mantra I kept repeating in my head was, don’t let me have liver cancer; don’t let me have liver cancer.

The biopsy was scheduled first. With trepidation I recalled an account of a friend who had a liver biopsy several years earlier. She still spoke of it with horror. My whole body was stricken with fear. When my doctor poked his head through the door he was not a welcome sight. He began the procedure by having me lie on my left side while he gently knocked on the right side of my rib cage with the knuckles of his closed fist. Next, he unwrapped a blue sterile tray and pulled on surgical gloves. Then he swabbed cold, orange Betadine in a circular motion over the side of my right, lower ribs and covered all but the center of my orange stained skin with blue sterile drapes. A local injection was administered between the ribs to deaden the area. Yowzah! A big burning sensation spread under my ribs. Glancing over my shoulder, I saw him select another needle, which appeared to be the size of an ice pick! I was sorry I looked and tightly squeezed my eyes shut.

"You're going to feel some pressure," he said.

I lay perfectly still, frozen in suspense, hoping the deadening medicine had done its job. He gave me some breathing instructions, and then swiftly struck the base of the needle with the heel of his hand . . . and it was over.

"Was that it?" I disbelievingly asked.

"That's it," he confirmed.

"I’d been dreading it."

"I know."

"One test down and one to go," I whispered.

Dr. Sachs was starting to look pretty good to me again. Soon the mystery of my illness would be solved and my disease would have a name.

The next morning I was wheeled down to radiology on a stretcher. Some technicians moved me to a cold, hard x-ray table. My doctor arrived and again explained the entire procedure. He would mildly sedate me and then advance a little tube-like scope down my throat through my stomach to the small intestine. Coming off the small intestine was a little excretory duct called the common bile duct. This duct connected to the gall bladder and liver. The tube would be placed close to this duct. A radiopaque ‘dye’ would then be injected through the tube and x-ray pictures would be taken as the dye filled the bile ducts of my liver.

"Yeah, all right Dr. Sachs, but don't give me too much of that sedative. I like to know what's going on. Probably has to do with a control issue or something. Just the same . . . will this take long? Gee, I hope not. Hey, that lead apron is sure big on you. Clearly, it isn’t one of my aprons. Maybe I should have one of my workers make you one that fits. Gratis, of course. I was babbling like an idiot. The thought of a tube down my throat was unnerving.

Dr. Sachs initiated the procedure with an injection through my IV. Wow. I was fighting to keep my eyes open. Whew-hew! This is some sedative. I was definitely floating away and wanted to tell him to back off on the medicine, but my mouth and tongue wouldn't work. (That was a first.) The doctor asked me to open my mouth while he sprayed something bitter on the back of my throat that would keep me from gagging as he advanced the tube. Although my jaw felt slack, I was able to comply. And what a tube! Even in my sedated state I could tell that it felt more like a garden hose than the small innocuous scope he had described earlier.

"Swallow like you're swallowing a piece of meat," he coaxed. I wanted to tell him that I usually chew my meat first, but the words wouldn't come, so I gave a big swallow and felt the tube slide down my throat.

Soon a radiologist came in the room and started taking images of the bile ducts. After completing the films, Dr. Sachs pulled out his scope. Someone wiped my mouth and cheek. To my surprise and dismay, I had been drooling on myself.

Mom met me in my patient room where she nested on the couch and read. The remainder of the morning I slept. Occasionally, I would wake up and anxiously wonder if the results of my tests were back. It was easier and less worrisome to drift back to sleep. Later that afternoon, Dr. Sachs stopped by. I was so eager to hear the verdict that I almost jumped out of the bed.

"Dr. Sachs! I’m glad to see you. Do you have the results of my tests?"

"I do," he affirmed.

" . . .Do I have cancer?"

"No," he answered, “no malignancies.”

I felt a flood of relief and gratitude.

"What you have is something called non-suppurative cholangitis. The archaic name for this disease is primary biliary cirrhosis."

"Non-sup…what is it called?” mom asked.

"Non-suppurative cholangitis,” Dr. Sachs pronounced slowly. "Cholangitis refers to an inflammation of the bile ducts and non-suppurative means the condition is not a pus-producing inflammation.”

" I’ve never heard of this disease. What causes it?" I inquired.

"It's believed to be an autoimmune disease involving the biliary ducts in the liver. Your body forms antibodies that attack biliary duct cells. This causes chronic inflammation of the ducts."

"Is there a treatment? " I wanted to know.

"We’ll help control the itching and make sure that you take vitamin D and calcium to keep your bones strong."

"Is this terminal?" I asked.

"Well, we don't think of it as terminal,” Dr. Sachs said. It is a chronic, progressive disease, but people with primary biliary cirrhosis can live many years."

Many years . . . At that minute, it was reassuring just knowing I didn't have cancer. That diagnosis would have been a certain, swift death sentence, I felt. People with primary biliary cirrhosis can live many years, he had said. Okay, it must be like diabetes, I reasoned, serious, but controllable.

Dr. Sachs advised me to schedule an office appointment later that week so he could tell me more about the condition and answer questions my husband or I might have. He told me it would be best if I visited his office every three to four months. At those times I could have blood drawn in the hospital’s outpatient lab to monitor the liver functions. That was livable.

Will the yellow eyes and fatigue go away, though, I wondered after he left my room? I need to write that question on my list of things to ask him. As soon as I got home from the hospital, I decided to educate myself about this disease. It would help me with questions I needed to ask and besides I wanted to be more informed when I met with Dr. Sachs in a couple of days. An old medical book listed the disease by its archaic name, primary biliary cirrhosis. As I read about it, I turned cold.

" . . . a chronic, progressive disease . . . usually runs its course in 3 to 5 years . . . results in cirrhosis of the liver then liver failure . . . "

I dropped the book!

What? That sounds terminal to me. Exactly how does Dr. Sachs define "terminal"? Maybe I misunderstood. Nevertheless, I wanted to choke him! I wanted to choke somebody. I couldn't believe this. And I had been so relieved that I didn't have cancer. Grabbing the phone, I tried to phone my husband, but he wasn’t in his office, so I punched in mom's number.

"Mom! You know this primary biliary cirrhosis thing? Well, I looked it up in a medical book that says that it runs its course in 3 to 5 years. I’m a dead duck!"

"No, Detna. Dr. Sachs said you have something called non-suppurative something-or-another," she corrected me.

"Yes, mom, and that is the same thing as primary biliary cirrhosis. This thing I have—it's . . . it's terminal."

There was a silence on the other end. Neither of us knew what to say. Finally, mom spoke with sad acknowledgement.

"Yes, life is terminal."

The simple truth of her words sunk in allowing me to rationalize my fate and put my fears into a philosophical perspective. True, life is terminal. The only question is one of time. It was the kindest statement anyone could have made at that moment.

Not All Organs are Created Equal

There are only two ways to be quite unprejudiced and impartial: one is to be completely ignorant; the other is to be completely indifferent.

~Charles Curtis

The summer following my diagnosis of PBC (which is the acronym commonly used to refer to primary biliary cirrhosis), I continued to feel sick and weak. Although these are common side effects of liver disease, I had a notion that the level of my fatigue was partially due to my emotionally distraught state. Every now and then I would find myself thinking, I have a chronic, progressive disease of the liver. Not good!

My weight steadily dropped even though I tried to eat. Frequently I felt hungry, but after a couple of bites I was overcome by nausea. With concerned expressions, my husband and parents watched my appetite and physical size diminish. By the end of August, my dress size had dropped from a size 8/6 to a size 4/2. Even though I felt sick, a part of me was secretly delighted with my new svelte form. I had always wanted to be a little thing. Now I didn't have to try, I simply could not tolerate most foods. Red meat, sauces and fatty foods especially revolted me. My loss of appetite was particularly worrisome for my parents, as they both grew up in a generation where it was appropriate to "clean your plate". A woman who was generously endowed was upheld as a "fine figure of a woman" according to the elders in my family. While my generation might see skinny women as "lithe and sexy", my parents' generation saw them as "gaunt and bony".

Unfortunately, many of our family functions revolved around weekend and holiday meals. I spent a great deal of time pushing food around on my plate, hoping my family wouldn't notice. Their oblique glances at my food made me anxious every time we sat down to eat. Sometimes my dad, overcome with worry, would blurt out, "She eats like a bird! I think she's becoming one of those anorexics."

"Ozzie, hush!" mom would warn him. And addressing me appealingly, "Detna, try to eat a little more. Your body can’t heal itself if you don’t eat."

If I could have eaten a little more, I would have. I convinced myself that I looked fashionably lean. It was only when I looked closely into the mirror at my yellow eyes that my heart would sink.

If my eyes weren't yellow, no one would know that anything was wrong with me, I told myself. But of course people could tell. Once, a nurse I had worked with at the medical center exclaimed during a brief encounter, "You've gotten so skinny and are you aware your sclerae are yellow? You don't have AIDS, do you?" Neighbors were beginning to comment on my weight loss and the unusual hue of my skin. Sometimes I would notice acquaintances stare intently at my eyes. Some would visibly shrink away, as though I were contagious. Others would blatantly ask, "Hey, do you know that your eyes are yellow?" The man who cut our lawn once inquired, "What's wrong with your eyes, Mrs. K? You been hittin' the pop?" The eyes—that was the biggest give-away.

When people found out that I had something wrong with my liver, several came right out and asked me if I "drank". Others made more delicate questioning innuendoes like, "Gee, and you never even drank . . . did you?" Although I initially felt surprised and insulted by their gauche remarks, I couldn't fault them because prior to my illness, I thought that liver disease was synonymous with hepatitis or alcoholism. I soon realized that the liver and related illness, carried negative connotations.

"Let's face it," I told myself," the liver has never been a romanticized organ, vital though it is."

It occurred to me that even organs are subjected to prejudice. Why, if what ailed me was associated instead with the highly regarded heart, the nature of my disease might have been seen with less fear of contagiousness or suspicion of substance abuse. Yes, the heart is a valentine, a symbol of love, or strength. Many songs and poems have been written about loving hearts, broken hearts, tender hearts, and fearless hearts. I don't recall hearing one song written about a liver. The only thing I can associate with liver is onions . . . and many people turn their nose up at that.

Folks don't appreciate how vital the liver is. Why, it's the body's refinery, filtering all the toxins we come in contact with. It's responsible for breaking down foods and aiding digestion. The liver is what makes our blood clot. It performs over 500 functions. The liver is much more complex than the heart. Does anyone other than my gastroenterologist care, though? I tell you, all organs are not created equal! Some are superior and do not get their just credit or recognition.

Verbal Reciprocity and Moral Support

A fellow-feeling makes one wondrous kind.

~David Garrick

A week after my diagnosis, I came across a newspaper article about a local woman named Janice Smith who was Houston's first liver transplant patient. Her surgery was a resounding success and my excitement rose as I scrutinized the article. As it turned out, Janice Smith lived in Friendswood, a small town next to mine. She had also suffered from PBC. As I read the feature, (which covered the course of her disease process and the trials and triumph of liver transplantation), I noted the commonalities of our illness: the jaundice (yellow eyes and skin), the incessant itching, the fatigue, the nausea—why here was someone who not only knew what I was coping with, but had survived one of the most complicated, dangerous operations a person could go through. Her recovery was amazing, and I was filled with hope. If my liver condition got too bad, I could have a transplant.

Over the next month I continued to follow Janice Smith's progress through the media. One evening while watching the six o'clock news, I saw that she was being released from Houston's Hermann Hospital. I waited a few days before looking her up in the local phone directory.

"Hi. Is this Janice Smith?"

"Yes it is," a woman replied.

"Well, you don't know me, but I've been following your liver transplant with great interest. You see, just this summer I was diagnosed with PBC," I told her.

Even though Janis was still weak from surgery, she spent the next hour giving me encouragement and advice. She informed me about a small support group for liver patients, which met every month at the Texas Medical Center in Houston. The next meeting was scheduled for August. I was anxious to meet her.

On a designated evening in August, my husband and I went to the first of many liver support group meetings. Shortly after our arrival, a lady with grayish hair and sparkling blue eyes approached us saying, "Hi, I'm Janice Smith". How vibrant and energetic she appeared! I carefully studied her eyes and noted that there wasn't a hint of yellow. To look at her, I would never have known that she had been so desperately ill. As she looked me over, I saw sympathetic recognition of my PBC and its symptoms.

After everyone arrived, we all sat down, introduced ourselves, and told why we were there and shared anything else relevant to our conditions. This was a ritual we would repeat at every meeting. Soon we came to know which liver disease everyone had and what their symptoms were. We learned about each other’s personal lives and became a family of sorts. One of the regular attendees was Mary Lee. She was a tall, willowy, woman who carried herself with quiet dignity and seemed mildly aloof. An undetermined strain of hepatitis had affected both her liver and lungs. During the course of her illness, she experienced increasing difficulty breathing. As time went on, Mary Lee started to transport a small oxygen canister to assist her breathing. There was also a woman in her early 30s named Annetta who attended the meetings with her husband. Annetta was an outspoken country gal. She had cirrhosis of an "unknown origin". A recent motorcycle accident further compromised her health. Although both Annetta's face and upper chest and arms appeared thin, her abdomen was very round and bloated. I later found out that this is a common side effect for patients with end-stage liver disease. It is a retention of fluid referred to as ascites. Some people have such a massive accumulation of fluid in the abdominal area that they look pregnant.

A young man, Warren, was Hermann Hospital's second liver transplant patient. Warren suddenly fell ill that summer of 1985 with a primary liver cancer. He and his wife felt hopeless until they heard about liver transplantation. The doctors at Hermann Hospital ran tests to see if Warren's cancer had spread. In the event that it had, he couldn't be a transplant candidate. His tests appeared promising and suggested that the cancer was confined to the liver. He underwent transplantation shortly after Janice Smith and experienced an excellent recovery. He and his wife were both articulate, attractive people in their early 30s with three small children. Their youngest child was still a baby. How fortunate he received a transplant before the cancer spread.

Another woman, Ruth, was about my age. She, too, had been diagnosed with PBC that summer. Ruth did not realize she had liver disease until results of a blood test that were run after a recent miscarriage revealed abnormalities of her liver enzymes. After her diagnosis, her doctor advised her not to try and have any more children. She was disappointed since she had one little boy and had hoped that he would have a brother or sister to grow up with. Ruth didn't appear jaundiced like me. I couldn't get over that! Some people have all the luck.

Norma and her husband, Charles, had lost their son to liver disease a couple of years earlier. They explained that when their son was a young boy, he had to have open-heart surgery. The heart surgery was a success, but he caught hepatitis-B from a blood transfusion. The hepatitis became chronic and by the time he was a teenager, he developed cirrhosis and died.

Linda Poe was in her late 20s. She had contracted hepatitis as a girl and thought she'd completely recovered. The latent hepatitis remained intermittently active and eventually devastated her liver. Later that summer, without warning, Linda became acutely ill from liver failure and almost died. The doctors at Hermann transplanted her with a healthy liver, but unlike Janice and Warren, she experienced a rough, unpredictable recovery. Her husband, two young daughters, and parents-in-law attended the meetings with her. Linda still looked sick and had a grayish pallor to her skin. One foot drooped when she walked as a result of her surgery and she needed a cane to assist her. Fluid accumulated around her mid-section and her face was swollen. I wondered if she would survive her turbulent recovery.

Brian was transplanted around the same time as Linda. He was in his early 30s and seemed to be a quiet guy. He came to support group meetings alone. At every meeting when we would introduce ourselves to newcomers, he would always say, "Hi, my name's Brian and I'm just glad to be alive." That was it! He was a guy of few words, but seemed to like the camaraderie of fellow liver patients. Brian had difficulties with his lungs before and after transplantation. Although he looked healthy, close inspection revealed that he was still frail.

Charlotte also had PBC. She attended meetings with her husband. What a contrast they presented. She was tiny and very thin, whereas her husband was a big fellow. He used a wheel chair and never said too much at the meetings. It was probably because some of us were so outspoken! Charlotte appeared reserved and attentive, but her husband's eyes seemed to glitter with cynical amusement.

Yes, we were from different walks of life and had different personalities, but drawn together every month out of concern for our illnesses, and soon out of concern for each other. Besides, who could understand "itching" better than another liver patient?

There are No Ants!

(Pruritus)

Symptoms, then, are in reality nothing but the cry from suffering organs.

~Jean-Martin Charcot

At least 8 years before I jaundiced and was diagnosed with PBC, I had experienced recurrent episodes of itching, which affected my hands and feet. Initially, the itching incidents were mild and infrequent, occurring 3 or 4 times a year, usually at night, lasting for approximately one week. What made them so memorable was that unlike an ordinary itch which is relieved by scratching, my itching was actually aggravated by scratching and would spread along my arms and legs, leaving me with a burning sensation and the urge to scratch even more. It was similar to the burning feeling one experiences from stinging insect bites.

After the birth of each of my children, the itching grew more intense and increased in frequency. Initially, my physician sent me to an allergist who determined that I had seasonal allergies to various pollens. He prescribed a medication called atarax to be taken when the itching commenced. Surprisingly, the atarax didn’t relieve this condition. I decided to see an internist and get a second opinion. After a patient history and physical, (which involved no lab work), this physician diagnosed my itching as "nerves". His $75.00 medical advice: "relax".

"Doctor," I tried to explain, "If I'm unnerved, it's because I feel like fire ants are stinging me, but when I check, there are no ants."

As time went on, the itching got downright awkward. I constantly had to keep a check on myself and make sure I didn't absentmindedly scratch in public. Sometimes my scratched extremities looked like I'd been in a catfight. One day after observing abrasions on my arms, mom reiterated her concern about this chronic scratching, "Detna, go back to the doctor. Itching like this isn't normal. My cousin Johnny used to suffer from itching and he had diabetes." (Johnny also had cirrhosis of the liver.)

Finally, after the onset of jaundice, one of the first questions my general practitioner asked was if I experienced any itching! This burning-type of itching was called pruritus, he explained, and was a well-known symptom of liver disease. I wondered where the two specialists I originally met with were when that topic was covered in medical school?

Once I started seeing my gastroenterologist, Dr. Sachs, he prescribed a powder called Questran to ease the pruritus. This powder had to be mixed and suspended in a liquid and then ingested. After experimenting with several beverages, I decided that the medicinal powder was least offensive in orange juice. The preparation of this potion was not as easy as it sounds. Once sprinkled atop a liquid, Questran tends to congeal and sink to the bottom of the glass. It had to be whipped with an electric beater for adequate dispersion and then swallowed quickly. It was gritty and left a course residue in the mouth and throat that had to be cleansed with a big gulp of water. Nasty as it tasted, this Questran concoction did offer some relief. So, two times a day I would faithfully drink my medicine, grimacing and sputtering by the time I unenthusiastically sucked down the last drop.

Pruritus was a big topic at our liver support group meetings. Annetta had such severe itching that she had actually taken a hairbrush to her legs and scratched them till they bled. "Doesn't the Questran help you?" I asked.

"I can't drink that stuff," she replied, "it's vile. The doctors say I'll start drinking it if I itch badly enough. I won't drink it though." I guess she showed them.

While some patients had severe pruritus, others had very little. Just the same, it was a cursed side effect for many who suffered with liver disease and one that drew sympathetic nods and sighs. I told the group about the doctor who said I needed to "relax" when I firstly complained about unusual itching years earlier.

They were all properly appalled. Nerves, indeed. And I had tried to tell him—there were no ants!

The Sky Is Falling

When sorrows come, they come not as single spies,

But in battalions!

~Shakespeare, 'Hamlet'

Ruth and I became fast friends through support group. Both of us grew up as an only daughter with two brothers. We had both driven a Mazda with a rotary engine. We both had sons. Every time we'd chat on the phone we'd uncover more commonalities that bonded us. Besides our ages and PBC, we discovered that we had attended the same summer camp as girls. Who knows, we may have shared a summer cabin together. If Ruth’s washer or dryer went out, mine would go out and vise-versa. It was uncanny. Most important, Ruth was the one person I felt could truly understand my fears concerning liver disease. After our first support group meeting, a week never went by that Ruth and I didn't talk on the phone. And we didn't just talk about our liver disease—noooo, we also discussed everybody else's liver disease. When we exhausted that subject we would move on to incidents that concerned our children and families.

Although Ruth didn't have yellowed eyes, her diagnostic tests revealed that her liver disease was considerably advanced. She had something called varices in her esophagus. Her doctor said that these varices were enlarged blood vessels, which developed because her liver was so scarred it could not properly filter blood. When blood cannot flow freely through the liver, pressure from the volume of blood attempting to pass through builds up and causes the blood vessels in the digestive system to dilate. Sometimes these varicose-like veins become so large that the vascular walls weakened and rupture resulting in internal bleeding.

At one of our support group meetings, a doctor came to talk with us about these "bleeds".

"How will we know if we're bleeding?" someone asked.

"If your stools are black or tar-like in appearance, this is an indication that there is bleeding. Black stools generally means that the blood is coming from the stomach or intestinal tract. Or some patients will vomit blood. This blood is bright red and may come from the stomach, but generally it comes from the esophagus."

The room became silent. Vomiting blood was a horrifying thought. Ruth asked, "Do we wait for the vomiting to stop and then call the doctor, or go right to the hospital?"

"You must immediately go to a hospital emergency room," he emphasized. "Often the doctor has to go down the esophagus with his scope to stop the bleeding."

Ick, the tube! But once the bleeding starts, I reasoned, chances are you could hemorrhage to death unless there’s medical intervention. It was a sobering thought. Someone inquired, "Why don't we proceed with liver transplants and avoid these hemorrhages?" The doctor explained, "Liver transplantation is complex and still very risky—there are many complications."

Look at Janice, Warren, and Brian, I disbelievingly thought. They look great; they feel great. True, Linda had suffered many complications, but she was still alive. As I glanced over at her, I wondered how long she would be with us? She still looked quiet ill.

Janice Smith told us she'd had several bleeds before her transplant. She made hemorrhaging sound as though it wasn't so menacing. But the look on the doctor's face contradicted her consoling words. Valiant Janice. If she could face hemorrhages and transplantation and continue smiling surely we could too.

That night, I had nightmares about bleeding. I was wallowing in a sea of blood—my own.

"WAKE UP!" I commanded myself. Yes, it’s just a dream. A bad, bad dream. Was it possible that I already had varices? I hadn’t thought to ask my doctor.

The next day I phoned my gastroenterologist’s office and requested a callback. Unlike many physicians, Dr. Sachs never had a nurse or assistant return his calls or act as a go-between. He returned his own calls. That courtesy was appreciated. I often felt that whenever assistants act as messengers, something is lost in the exchange of information both coming and going. Soon the phone rang.

"Hello, this is Dr. Sachs returning your call. Happy Friday!"

What a funny guy. He was always saying the corniest things. Nevertheless, his brand of humor had a rather endearing quality that I grew to expect and look forward to. "Yes . . .and eh, happy Friday to you too," I answered. "Dr. Sachs, you know how some patients have those esophageal bleeds? Well, do I have any varices yet?"

"No, your ERCP didn't show evidence of esophageal varices."

Yet, over the next several years, this was a subject that would come up over and over. I felt guilty for the redundancy of my concerns. Dr. Sachs was unfailingly patient and as reassuring as possible under the circumstances. Several times he told me to let him worry about my PBC. I earnestly tried to relax, but how could I be sure he was giving my illness the worry it deserved? Janice Smith had survived several of these bleeds and was still alive. Besides, I heard the nurses at Methodist Hospital say that Dr. Sachs was the best physician at the hospital with his scope. That's when I began to have a much higher regard for those scopes. That's also when I started dreading every time my doctor would leave town. What if I got sick while he was gone? What if I’d developed varices and had a bleed?

Ruth and I continued to talk every week. It was reassuring to go through this with a friend. Little by little, we grew used to our illness. The possible side effects, although frightening, somehow grew remote. Life went on.

Soon it was the Christmas season. I love Christmas-time. Ruth and I were both so busy getting ready for the holidays that we were left with little time for talking. I missed our long, wacky conversations, but there never seemed to be enough time at the end of the day to sit down and catch up. If only the holiday preparations didn't leave me so very tired. I had never fully recovered my strength after the onset of jaundice and oftentimes, the smallest tasks seemed monumental.

Finally, several days before Christmas, I found a quiet time to call Ruth. When she wasn't home, I tried to reach her at her mom's house. I knew she joined her mom every year and cooked batches of Christmas cookies for neighbors and friends.

"Hello?" her mom answered.

"Hi, Mrs. Langland? This is Detna. Is Ruth over there?"

"Detna, Ruth’s in the hospital . . . she had . . . she's had an esophageal bleed."

No. Oh no! But it was true. She was living our nightmare. Like a presage of disaster, her bleed marked the beginning of ongoing tragic events for our support group.

A couple of weeks later, Ruth, who was now out of the hospital, phoned, her voice even but anxious as she demanded, "Have you read today's Chronicle?"

"No, what's up?"

There was a brief pause before she responded, "Janice Smith died last night. She got very sick and was rushed to the hospital. The surgeons had to transplant her again, but she died on the operating table."

"Janice?" I uttered in disbelief. "But she was doing so good."

We sat in silence, momentarily stunned.

Later that day I talked with Janice’s daughter, Lynn, who was a nurse. She was the liver transplant coordinator at Hermann Hospital where her mom had surgery. The victory of being part of the liver transplant team that had saved and transformed her mother had suddenly turned into a tragedy. Hermann Hospital’s first liver transplant patient had died. Lynn had lost her mother and best friend.

All day, our small network of liver support group members were calling. Everyone was shocked and devastated. Before the day ended, I spoke with Warren’s wife. Warren was the cancer patient who had been transplanted right after Janice. After discussing Janice’s death, Warren’s wife quietly said, "Warren is back in the hospital. We think his cancer has returned. "

Her news was so heart wrenching that it left me speechless. Not Warren. Don’t let it be true, I prayed.

A month later at our support group meeting, we were still trying to accept Janice’s sudden death and Ruth’s life threatening bleed. And Warren was dying—wonderful Warren, who had a beautiful wife and three little children. His cancer had definitely returned and metastasized. There was nothing more the doctors could do. He was thirty-one years old.

Our group was uncharacteristically silent. Struck by the shattering outcomes of liver disease and the uncertainties following transplantation, I turned and gazed at other group members. Mary Lee sat straight and silent, her oxygen canister near by. Annetta unthinkingly scratched at her arms and legs, her forehead wrinkled with concern. Charlotte’s head was cocked slightly to the side; hands clasped, her forearms rested on the table as if seeking support. From his wheelchair, her husband’s presence loomed with power and frustration. There was no twinkle in his eyes now. Like a journalist photographing people amidst the debris after a storm, my mind etched these somber images of fellow support group members. Looking at Ruth, now jaundiced and peaked from her recent bleed, I wondered aloud, “What will happen to all of us?”

“I don’t know . . . I don’t know,” she gravely replied.

One Day at a Time

Life is what happens to us while we are making other plans.

~Thomas la Mance

Spring 1986: Although Ruth recovered from her bleed; it was to be the first of three. Support group became depressing and I found that I was reluctant to attend. After Warren died that spring, I felt myself growing more and more dependent on Dr. Sachs. He became my emotional lifeline.

Sometimes I would get frightened even though I was feeling reasonably well. Many of my fears revolved around the wellbeing of my children. Would I live to raise them? This dominated my thoughts and was my greatest anxiety. Each of our sons was so different and each had different needs. Our older son, John, had developed asthma when he was an infant and relied on daily bronchodilator medications. He also depended on a breathing machine called a nebulizer. A liquid medication went into the machine and the medication was inhaled as a mist through tubing and a little oxygen-like mask. When he was a baby I treated him with medication from his nebulizer three times a day and sometimes in the middle of the night. Many nights I would sleep on the floor by his crib to make sure he wasn’t wheezing. By the time he began first grade his asthma had improved and he rarely had to use his nebulizer. I still gave him oral medications to control bronchial spasms and left an emergency inhaler with the school nurse. Nevertheless, his asthma was a constant concern to me. Besides this health problem, John was clearly different from his peers in that he began reading by the time he was three and had a fascination with physics and science. He would read encyclopedias for fun and was always lecturing to me about one subject or another. He was like a little professor and these qualities did not make him popular with the neighborhood children. He was always puzzled and offended that the other little boys were more interested in talking about basketball and racecars than the chaos theory. Our younger son, Michael, cared nothing about quantum physics or reading encyclopedias when he was little. He was a rough and tumble boy. Once he was big enough he would race around the neighborhood on his bike or skates visiting friends and not coming home until it was time to eat. He would hang from treetops like a bat, then swing from branch to branch as he disembarked. Once I found out that he was taking a flying leap off our garage roof into the pool! I tried to keep tabs on him, but he was fiercely independent and hid his shenanigans fairly well. Whereas John was self-motivated when it came to studying and completing homework, Michael was parent-motivated when it can to academics. These things troubled me when I thought about the possibility of dying while they were still young. I strongly believed that my guidance and love was essential to their emotional, physical, and academic welfare.

My other fear: what if I had a bleed around them? Ruth and her son were home alone when she had one of her bleeds. Her vomiting had been so violent that blood splattered on the walls. She later told me how her five-year-old son was stricken with terror. As she was brought into the emergency room, she recalled hearing him cry out, "Don't let my mom die! Don't let my mom die!" I did not want my own sons to witness such a scene.

Some days my qualms would start to swell until I felt compelled to call my doctor. I couldn't seem to tell him that I felt sick in my soul with worry for my children. There were not any words that could express my gnawing fears. Instead, I would always ask him about some minor ailment. He knew though. He knew I was emotionally needy and running scared. By the time we finished talking, I felt a sigh lift from my heart. I would be all right. My children would be all right. And for at least a month or so I was fine. Fear is a funny thing, I noticed. It is cumulative. Sometimes I would pick up disheartening bits of information from a support group member or from the news, which piece by piece was not overwhelmingly significant. Eventually though, the information I stored became staggering. I would start to feel engulfed by the uncertainties of this disease and its effect on my family’s life. No one ever told me that life came with guarantees; but in my heart, I truly thought it did. I expected and took for granted that I'd watch my kids grow up, that I'd outlive my parents, and that my husband and I would grow old together. What went wrong?

I wanted a miracle. Often I would fantasize that while passing a mirror I would catch a glimpse of my eyes and realize that they were exceptionally white! I would rush to the doctor and have lab work that would come back normal. My doctor would be baffled and I would be so happy; so very happy. In hopes of realizing this dream, I would begin each day by checking my eyes in the mirror. Typically, they would fluctuate from pale yellow to lemon yellow. Their "whiteness" or lack of it would tend to dictate my day. Almost white meant energy (as I came to know it) and peace of mind. Yellow meant fatigue and unhappiness. I read once that eyes are the windows to our souls. My windows are dirty, I'd think. Where are my sunglasses?

Dr. Sachs frequently told me, "Live one day at a time." But the first time he said it I thought, One day at a time? How dare he! He is voiding my future with that statement. He probably doesn't think I have a future. After pondering his counsel, I came to realize that the future was what I typically lived for as an adult. My present was consumed with plans for the future. How did he know? Like many adults of my generation, I was so busy mapping out my life that I rarely stopped to acknowledge and appreciate the here and now. I wasn’t fully living in the present. Knowing that my life might be untimely punctuated further drove me to devote even more attention on the future and grasp toward my tomorrows. My mind was in a frenzy. I couldn't seem to stop the brainstorm. "Live one day at a time." It seemed like such simple advice. But how, Doctor? I don't know how.

That summer, exactly one year after my diagnosis, I made a decision. I would sell my business and go back to college. It was a painful decision. I had loved and nurtured my business, but it took so much energy to run it properly. In fact, it had become consuming as our customer base began extending beyond Texas. In order to give my clients personalized attention, I would frequently fly to hospitals and meet their department directors. It was tiring.

Liver disease and the fatigue that accompanied it had rendered me physically incapable at times, but I was still intellectually healthy and starving for activities that would take me away from my chronic illness. I know! I'll study anthropology. When I was a little girl, my 2nd grade teacher used to pass out Current Event newspapers to each student. Many of the featured stories were about people from all over the world. I would read that paper from front to back. The customs and rituals of people around the world captured my curiosity and imagination. When I was older I read Margaret Mead’s Coming of Age in Samoa, which further fascinated me. I had actually wanted to study anthropology in college, but my folks didn’t think it was a practical degree. Well, I’d gotten a practical degree in allied health science plus a professional registration in in special procedure radiology. Although I had found most aspects of medicine interesting, I now wanted to indulge myself and study something I’d always had a profound interest in. Besides, I'd grown weary of wallowing in my fears. My year of mourning had run its course. Suddenly I felt happiness and freedom for the first time since my diagnosis. Good gracious! Why am I wasting precious time worrying about death and barfing blood? I think I'll have some fun and who knows, maybe I'll grow old. I was ready to live the moment.

Over the next two years I tried to do just that. Slowly, I pulled away from the liver support group. Our group, small as it was, grew smaller every year. Annetta, who refused to take her "itch powder", had a transplant in Pittsburgh earlier that year but died several months later. Then Brian caught pneumonia and died.

"I'm just happy to be alive," he always used to say.

Linda Poe, one of the sickest transplant patients from our group, was still with us though. She looked bloated and sickly, but I kept hoping that she would be the lucky one and have her health restored. It was apparent to me that transplantation was not the panacea for what plagued us. But it was our only option.

Ruth and I still talked, but not as frequently. I didn't think I could bear it if Ruth died. We had become too close. I identified too much with her.

Through it all was dear Dr. Sachs. Every time someone from our group would die or go in the hospital, a blanket of melancholy would temporarily settle over me. I resented my growing dependence on this doctor, as I had always been autonomous, sure of myself, and feisty. But I would call him regardless with some benign malady. There were no medications for what ailed me. He knew what I needed was a psychological fix.

Reprieve

The greatest adventures are experienced in the soul of man, not across oceans or deserts.

~Dugobert D. Runes

Like all living things, I learned to adapt to the conditions and restraints that governed my existence. Before long, my illness and its limitations had become a way of life. When I cooked, I sat on a stool I kept by the stove. I chopped vegetables sitting on that stool; I stirred stew from that stool; I supervised the kids’ homework from my stool; and I wrote college essays from that stool. When the children and I went shopping for their school clothes, I would constantly scan the mall, noting where the lounging areas were. We would walk 10 or 15 minutes and then sit 10 or 15 minutes. If the children were trying on clothes and there wasn't a bench or chair to accommodate waiting parents, I would lean up against the wall or sometimes sit right on the floor just outside the fitting area. I wouldn't openly acknowledge that I was tired. Instead, I would sit "to browse through our packages" or stop to "drink a cola".

My lack of energy didn't stop me from registering for classes at the university. I assumed most of the time I'd be sitting listening to lectures—and I had gotten good at sitting. This sedentary life was especially regretful to me. I had always been very fit and actually loved all types of physical activity. Now when I climbed the stairs I got winded. I hope I had enough energy to sit through 3-hour lectures. The thought of being a student again was exciting but daunting. As the semester grew closer I began to feel a little apprehensive. Here I was, in my 30s, definitely not your traditional college student. And yet I was going back to school.

The first day of class after parking and walking to the main building, I longingly glanced back at my car.

"What am I doing here?" I questioned. "College is for kids. I already have college degrees."

As I hesitantly turned about, a man who looked to be in his 60s came bounding up the stairs to the main building, two at a time. I watched the back of his faded blue jeans and t-shirt disappear through the doors. He even had a backpack slung over one shoulder like the kids.

Ha! I'm a spring chicken next to him. Onward.

I didn't take the stairs two at a time; just climbing them was a challenge. But I sure did walk through those doors like I belonged.

For the next two years I traveled all over the world and went back in time—from ancient civilizations to complex societies. I walked and fished with the Eskimos. I made farina with the Yanamamo Indians of the Amazon. I danced with the Creoles in Sierra Leone. Every semester I accepted my schedules and syllabi with great anticipation and excitement. They were my itineraries. My texts were my vehicles to places far away. My professors were my windows to the world. When lecture would end, I would return home and miraculously take on the role of Detna Kathleen, wife and mother, daughter, sister, scout leader, PTA member, and solid citizen. There was no place in my life for sickness. When the children got home from school, I would fill their heads with stories of the Dobi Kung in Africa or Australian aborigines while they ate home-baked slices of warm banana bread and drank cold milk.

My husband, Ernie, and I learned to be spontaneous. Before my illness, I used to painstakingly plan our lives to the hour. We lived according to a thoughtfully structured efficient schedule. Liver disease had gradually cured me of that obsessiveness (to a degree). One day I read an ad in the travel section of the paper. "Amtrak—See the World From a Train!" They advertised a special rate to Washington D.C. Turning to my husband, I exclaimed in excitement, "Ernie, I've never been on a train. Well, not a real train. Let's go to D.C.!"

An impromptu trip didn't fit into our schedule, but who cared? The next thing I knew, we were chugging down the tracks between Houston and the nation's capital. Reclining in my seat, I viewed America as I never had before. Instead of gas stations, fast food restaurants and shopping strips as seen from the highway, I was observing back yards with clotheslines and swing sets, the industrial sections of small and large towns, and expanses of countryside, untouched by cement ribbons of highways and towering bill boards.

Upon reaching D.C., we checked in at a bed and breakfast then began our marathon venture of the nation's capital. The touring was exhilarating, but so physically exhausting that I had difficulty keeping up with my family. Sometimes, I would drop down on the nearest bench and urge Ernie and the boys to go on and come back for me after they had completed their sightseeing. While they were seeing the "real thing", I would read the pamphlets, which described Washington's main points of interest. As I would sit deep in thought wondering what my husband and the children were doing, I recognized the altered role I had come to accept: that of observer instead of participant. I learned to be content with that role.

Wherever we went, I traveled with a generous supply of Questran powder to control my itching. I found a little battery operated, hand-held, mini whisker to blend the Questran and juice. Every morning and evening I would order orange juice with my meal. I’d quickly dump a premeasured packet of Questran atop the juice and take out my mini whisker. Sometimes I'd notice other vacationers curiously watching me when they heard the whir of my little beater.

"Brewers yeast," I'd say with a cheerful nod. "Good source of vitamin B." They would usually respond with an uncertain smile and continue eating.

Fortunately, my lab values (although not normal), had stabilized. Even my jaundice abated slightly. A small measure of strength seemed to have returned. This evolved into a time of intellectual enlightenment; of immediateness and abandonment; of family cohesiveness. It was a time of intensity and depth. I could almost forget about the disease that pursued me. Just about every evening my husband and I would retreat to the pool’s spa and watch the stars twinkle and queen palms blow in the evening breeze. We’d talk about the children and sometimes speculate about my progressing disease.

“Ernie, how do you think this will play out?”

“You’ll eventually have a transplant and live. We’ll raise our boys. It will be fine.”

I believed him because I wanted to. I looked to him for hope and love. What lucky twist of fate had brought us together? The night blooming jasmine scented the air and my spirit was comforted by the beauty of nature and my husband’s positive thoughts. This was good medicine. It was a sweet reprieve.

Blind Fortitude

My strength lies solely in my tenacity.

~Louis Pasteur

January 1989: I had earned a degree in anthropology and was pursuing postgraduate courses in the behavioral sciences. My health status remained relatively stable over the past several years and I gradually acclimated to liver disease, thinking about its eventual implications less and less. This sense of wellbeing inspired me to go back to work while I continued with graduate school. Although nobody came knocking at my door requesting an anthropologist, I didn't have to look far to find a job. The Director of the Radiology Department from Houston Community College called to say she had a faculty position available for a degreed radiologic instructor to teach for a 2-year program. I felt that my degrees in allied health and the behavioral sciences would add dimension to my teaching. Armed with enthusiasm and optimism and a brain-full of ideas, I began teaching radiology courses in the spring of 1990.

Houston Community College has many campuses. Some, like the first facility I was assigned to, are old vacated high schools. This particular campus was located in an old, unkempt, seedy-looking neighborhood. The parking lot presented itself as an obstacle course peppered with huge potholes that forced vehicles to creep at a snail's pace. The school looked rundown and grimy.

Oh, brother, what have I gotten myself into? I inwardly wondered. What kind of students would sign up to go here? I hope they aren't a bunch of thugs.

The classroom looked surprisingly clean with all the desks placed in nice, neat rows. There was a fully equipped lab behind the classroom and a teacher’s large instructor’s office to the side. Nice. As I prepared for lecture, students started to arrive. What a variety. They ranged in age from late teens to mid-40s. There were white, black, Hispanic, Asian and eastern Indian students—and not one of them looked like a thug! A few of the students came directly from high school. But some of the older men and women already had a college degree and were making a career change. They were looking for a technical occupation to increase their marketability in the present unstable economy. Many of the older female students were "re-entry women" who had varying amounts college then stopped to marry and work as housewives and moms for 10 or 20 years. Some of the students had worked, but never attended college. Unlike some college freshmen with undecided majors and their parent's money to back them, most of these students had a definitive goal in sight and just about all were financing their own education. Their lives tended to be complex, involving jobs, families, mortgages and taxes. For most, taking two years to earn an associate degree in radiography was a sacrifice and burden. Often these students would come to class tired and glassy-eyed from trying to work and study. They were so committed and motivated, though, that when the lecture began, their eyes cleared and pencils would fly as they took notes. Soon I began making lecture outlines to hand out before each class so the students wouldn't have to write quite so frantically. When I came upon important information that I did not want them to forget, I would say, "Star, circle, underline!" They quickly marked their outlines because this information, as I had informed them, would be on their exam. I tried to make my classes as straightforward and informative as possible. These students had demanding lives and this educational quest was only one aspect of their time.

I came to relish my teaching endeavor because it allowed me to throw myself into the art of instruction and avoid dwelling on the gradual physical deterioration I could tell was occurring. Through teaching, I could find my warm, funny, creative, nurturing self and force that part of me that was intimidated by my illness into hiding. Soon my favorite challenge was how, as an instructor, could I go beyond the age, gender, educational and cultural differences, plus socioeconomic disparities and come out with a cohesive group that was generally receptive to the same method of instruction? I neither wanted to bore some nor talk over other's heads. How could I keep it simple, yet interesting for all? One topic sharply reflected this concern: radiation physics! While those with a recent or sound background in algebra didn't seem too pained by this subject, I found that at least half of the class had math phobia.

"Can you make a cake?" I asked them. "You know—follow a recipe and bake a cake. Yes? . . Okay then, you can do physics. You'll see."

That afternoon, on the way home, I stopped by the drug store and picked up a package of index cards. The next day during class I passed out the cards.

"These are your recipe cards for the inverse square law."

At the top of the card they wrote: "RECIPE FOR INVERSE SQUARE LAW". Under that they were instructed to "list the ingredients" which made up the formula. Systematically, I had them write each step of the formula with directions on how to "mix" the formula at the bottom of their card.

"Now put this in your memory banks, bake it for 30 minutes, let it cool, and you’ll come out with the inverse square law. By the way, you have all just worked a radiation physics problem." Ha! So much for math phobia. Later, however, it got back to me that some of the other radiology instructors claimed that my handouts and recipe cards constituted "spoon feeding". Shaking my head with amusement and disbelief, I wondered why other instructors troubled themselves about teaching techniques I chose to employ. Somehow the wagging tongues of fellow faculty seemed trivial to my present concerns. I figured they didn't have anything better to worry about. From that time on, however, I was sorely tempted to clank a big bell and call out before every class, "Food's on! Come and get it."

Whenever I walked into the classroom, no matter how tired I felt, I experienced a rush of adrenalin. Oddly enough, if any of my students noticed my jaundiced eyes, they never mentioned it. I was completely focused on my lessons and keeping the students’ attention. I wanted the instruction to be a positive experience and somehow managed to summon the energy to do whatever it took including demonstrations, humorous analogies, field trips, and yes—even recipe cards.

One semester I had a particularly wild and crazy group. After going over the syllabus and semester schedule, which was quite intense, one student flippantly inquired, "Ms. Kacher, can you be bribed?"

"Certainly not," I was quick to respond. " . . . although, I am quite fond of Junior Mints!" I laughingly teased.

Several weeks later, on the day of their first big exam, I walked into an unusually quiet classroom.

Are they that cowed by their first exam? I wondered. I could usually hear these wild students all the way down the hall as I was making my approach.

"Before we begin," I asked, "are there any questions?"

"Ms. Kacher, could I see you for a minute?" a lady in the front row asked.

When she reached my desk, she playfully plopped down a box of Junior Mints. Suddenly, there was a rush of students heaping the desk with Junior Mints.

"I see—you must want a curve."

"Only if you insist," someone laughed.

"Bonus points will do!" someone else called out.

That day, on the drive home, I consumed box after box of mints. Fortunately, I hadn't lost my taste for sweets. I could eat all I wanted, because I never gained weight. What funny students. They really made my day.

After arriving home, I retrieved a message on the phone’s answering machine from mom. When I returned her call, my day quickly turned grave. Ruth was scheduled for a transplant. Her time was up. My stomach tightened.

"…Ruth," I sighed.

Sinking to the couch, I stared about the room. Were the walls closing in, or did it just feel that way?

When my husband arrived home, I told him, "I'm not feeling well. Can you fix dinner?"

I couldn't wait to get back to my funny students and catty cohorts the following day and leave thoughts of illness and transplants behind me. A forced and marked duality had taken hold of my life. The minute I walked on campus, I was transformed. I was the instructor, the lead actor, taking center stage with no other thought than to enlighten and delight my audience. At home alone, I couldn't escape through a performance. I timidly confronted the implications of this disease, which was getting worse. It was the only time I allowed the weary, vulnerable me to emerge. This script is all wrong, I'd think. I'm supposed to play the strong, vivacious wife and mom. And when my family came home at the end of the day, I put on my game face and was ready to perform again. I did not want the children to remember me as sickly.

Each workday when I would arrive home after class, I always felt a heavy exhaustion. Climbing on my kitchen stool I would rest my head on the cool top of the island while I alternately cooked, chatted with the children, and graded papers. Sometimes I was so weak I couldn't eat. Other times at the end of the day, if I still had enough energy left to remove my makeup, I'd observe a pinched face with dark circles accentuating sunken eyes.

"Is that me?" I'd say aloud. "Well, thank goodness for Borghese makeup. Talk about great foundation coverage!"

At night while sleeping I began to experience severe cramping in my feet and lower legs. The spasms were so keen that I would jump out of bed and massage the insolent muscles. The morning following these episodes, the affected leg would be so sore that it ached throughout the day.

"It's your liver condition. You aren't absorbing calcium," a nutritionist explained.

The liver performs over 500 functions, I recited. What next?

Somehow I always summoned the strength to attend PTA meetings, be a scout leader, and a graduate student. I had to do it all. Some days I felt so sick with exhaustion that I'd drop the façade of normalcy and admit to my husband, friends or folks how tired I actually felt. Their usual response was how tired they too felt. Looking at them with amazement I wanted to say, "But I am really tired; bone tired." How could they ever understand? They were, after all, looking at the world through clear, healthy eyes. After a while, I became so accustomed to feeling sick and exhausted that I would rarely acknowledge it. Living had become a chore, yet it felt normal. When my doctor would ask how I felt, I would tell him, "fine".

Gradually, I stopped going to the mall and went grocery shopping when absolutely necessary. My husband began taking over these tasks. At night when I would sink into bed, I would sigh with weariness and relief. But, hey, everybody's tired at the end of the day. Right?

Arduous Journey

"Does the road wind up-hill all the way?"

"Yes, to the very end."

"Will the day's journey take the whole long day?"

"From morn to night, my friend."

~Christina Rossetti

February 1991: My mom and Ruth's mother became friendly through liver support group meetings. Often entire families would attend these meetings. Even though I stopped going to all but the annual holiday get-togethers, my mom and dad continued to go to the group meetings regularly. I suppose family members need as much support as the patients—maybe more.

Mom and dad were overcome with sorrow by my chronic illness. Many times mom would retrace my childhood and even her pregnancy with me trying to find some explanation for my PBC. She and Ruth's mom would compare family medical histories, attempting to find a common denominator. They wanted an answer. They could find none. Sometimes I'd say, "Mom, we'll probably never know why I got sick. It just happened." But often, I too, would relive incidents in my life that could have triggered this illness.

"I was a healthy child and young adult. I didn't smoke, drink, or use drugs. I never even took aspirins! I exercised daily. I loved to swim and canoe. I ate whole grain breads, organic fruit and vegetables and lean protein. I made my own yogurt and granola! I was mother earth when it came to eating. Why? For somebody who had worked in the medical profession, I knew this was as asinine question. Well, why not me? Children are dying. No one's exempt. Things happen."

I tried to ignore the fact that Ruth was going on the transplant list, but the thought was like a neon light that kept flashing repeatedly in my head: Ruth is having a transplant! She would leave after the Christmas holidays for Baylor University Medical Center in Dallas, Texas where she would wait until a matching liver was found. I wanted to talk with her before she left, like old times, before we had lost so many friends from complications of liver transplantation. Now there was an innocence lost. Time and again our hopes for a healthy recovery were deflated. We both knew what a perilous road she faced. I felt at a loss for words. Right after the Christmas holidays, I finally knew what I wanted to say.

My call was too late--she had already gone.

"Safe journey," I muttered to myself, hoping my words had wings.

That spring semester, my teaching schedule started as usual, except for the knowledge that as I taught, Ruth might be having her surgery. Then, in mid February, mom called.

"Ruth had her transplant yesterday and is doing fine."

"Really! Are you sure she's alright, mom?"

"Yes. I've talked with her mother. Everything went smoothly."

"Thank goodness. It's wonderful. Keep me posted, mom. " I wanted to weep with relief.

Over the next month though, my mother seemed vague about Ruth's progress. It is not like mom to be vague. I started to grow doubtful and decided to phone Ruth's parents' house. Their calls were being transferred to a neighbor.

"Hi," I said, "I'm a friend of Ruth's and am calling to see how she's doing."

"Yes, well, Ruth is not doing so well. She had to be re-transplanted. Now her kidneys are failing and she is on dialysis. May I take you name? I'll let her parents know that you called."

I felt numb. Why didn't mom tell me? She was probably biding time, hoping that Ruth would recover so that I would be spared this excruciating news. I wanted to wail like a wounded animal. My throat felt parched; I couldn't even whimper. This was turning into another nightmare. How depressing.

Several days later, my mother finally revealed Ruth's condition, which had worsened by that time. Ruth had started having seizures and was in a coma. She also had a massive infection, which in itself is often a death sentence for a transplant patient. I'm not a religious person in the conventional sense, but that night, I performed the most conventional type of religious action, I prayed.

"Dear God, please hear my plea. Help Ruth heal . . . let her come home and raise her son." Raising our children, that was always our fundamental goal and our most gripping fear. Our husbands could find another wife and probably would, but our children could never find another mother. Never. Not even a grandmother can take the place of a mom.

Somehow, Ruth did survive. The following summer, after 5 ½ months in the hospital, Ruth came home. She arrived in a wheelchair, still too wasted and weakened to walk. Against unbelievable odds, she made it. My relief was beyond words. As much as I wanted to contact her, I waited a couple of weeks until she settled in. I'll never forget how thready her voice sounded when I made my first call. Despite her weakened state, she found the strength to relate memorable incidents that occurred during her medical adventure in Dallas.

Every week Ruth's voice grew a little stronger. As time went on, the story of her transplant unfolded. More than before I came to realize that liver transplantation is not for the meek of heart. The surgery is just one hurdle. The journey back is often long and arduous.

Painful Revelations

To see what is in front of one's nose is a constant struggle.

~George Orwell

Part of teaching radiologic technology is achieved through classroom lectures and labs and the other part is accomplished with clinical training in a hospital setting. Houston Community College had many hospital affiliates for practicing clinical instruction. I was usually assigned to The Methodist Hospital, which happened to be my favorite hospital in the medical center. I not only completed my own clinical training on the Methodist/Baylor campus, I met my husband there, and later gave birth to both of our children there. Methodist also happened to be the hospital where Dr. Sachs, my gastroenterologist, practiced. This was fortunate, because on days when he requested lab work, I could arrive at the hospital a little early, pick up my lab requisition, go have my blood drawn and rush back to the radiology department before the students arrived. The sleeve of my lab coat safely hid the bandage that held pressure at the puncture site on my inner arm. No one ever knew where I had been.

Now my blood was drawn every other week. One morning, before going to the med lab for my blood draw, I was detained by some students who arrived early and needed help radiographing a patient. Placing my lab requisition on a counter, I assisted them with the patient then waited outside the darkroom to check their films. Several students began gathering around me when I noticed one of them glancing down at the lab slip I’d left on the counter. For a moment our eyes locked. Then she whispered—a quiet revelation actually, "So, that's what's wrong with you. I wondered." I realized that my diagnosis as well as the kind of lab work to be performed was written on the requisition. The other students looked at us questioningly.

"Yes," I conceded, "I seem to have an autoimmune disease of the liver."

It was painful to admit.

“Is that why your eyes are yellow?” another student asked.

“Yes, yes it is.”

They were curious and began asking me questions.

"No, the doctors don't know how I got it. You all remember that we studied about autoimmune diseases. They are very enigmatic. No. No, I'm not contagious. It’s an autoimmune disease, like rheumatoid arthritis, lupus, or myasthenia gravis—you can’t catch those from others. Liver transplant—no, I don't think so! At least not yet. You see, people with primary biliary cirrhosis can live many years. Many years," I reiterated.

The following fall semester I definitely had my all time "favorite" class. Our first day together I called out each student's name and asked why he or she chose to study radiology.

Upon noticing that we had two Duanes in the class, I asked if either had a nickname we could use to avoid confusion. One of the young men piped up and called out, "Jersey".

"What's that? I'm sorry, I don't think I understood you," I answered.

"My nickname. It's Jersey," he repeated.

"Oh. As in New . . .?"

The entire class laughed their heads off. Goodness. Was that funny? What a great class! I love it when they have a sense of humor.

Later that fall, while studying radiographic pathology, we reached the topic of autoimmune diseases. As I was describing various autoimmune diseases, a voice in my head kept saying, "So, that's what's wrong with you."

I should say something about my PBC, I realized. They'll start to wonder, if they don't already.

That day, for the second time since my diagnosis, I was able to tell people outside my family and close network of friends that, unluckily, I had an autoimmune disease. I fit it into the lecture by adding (in a very matter-of-fact, lecture voice),

"And, by the way......I......primary biliary cirrhosis..... Affects the bile ducts......unknown etiology..." In psychology, this type of reference of a touchy or emotional topic is a defense mechanism known as “intellectualizing”. It permitted me to speak of my condition with a certain detachment. My students sat there in silence.

"You see," I continued to explain, "sometimes the sclerae of my eyes turn quite yellow; so don't be alarmed when that happens. I want you all to know, though, that I am not contagious. Occasionally I get a little tired, but overall, I'm fine, just fine. Looks like you're stuck with me for two more semesters!"

Quasi-smiles played at their mouths.

Whew, that's behind me. Now they won't have to wonder, I told to myself.

Later that semester my fatigue became so crippling after lectures that I frequently returned to the teacher workroom to rest at my desk until I felt capable of driving to our home in Pearland. Two of my students who lived close to Pearland realized how sick I’d become and began driving me home when I was too weak. Other times I would wait for my husband to finish working at Methodist so he could pick me up and drop me at school the following morning. One day, while recuperating at my desk after classes, I received a phone call from Dr. Sachs. This was odd. Dr. Sachs never phoned me at work. I knew without asking that the news wasn't good. My lab numbers, (liver enzymes), were continuing to rise. He was contacting a liver specialist, a hepatologist, for further consultation. There was a drug he wanted me to try, methotrexate. It was a potent drug with questionable long-term effects, but some research indicated that methotrexate had helped patients with chronic liver disorders. The disease was slowly closing in. What did I have to lose?

Running into Realities

That that is is.

~Shakespeare, "Twelfth Night"

The hepatologist's (liver specialist) name was Natalie Murray. My mom drove me to her office since I had difficulty driving outside the Pearland/Friendswood area due to my fatigue. My confusion and memory were beginning to get worse and I was glad I had someone to help me remember what the physician said. Besides, I was nervous seeing someone other than Dr. Sachs. I felt like a little kid about to take my first big roller coaster ride. I'd have the nerve to do it with mom; she wouldn't let me fall. I nervously looked out the window, tapped my foot, crossed and uncrossed my arms as the doctor studied my medical history. After asking me several questions and briefing me about the drug, methotrexate, she candidly stated the facts regarding my illness:

"If you think that you won't have to have a liver transplant, you are dealing with an illusion. You'll have a transplant or die."

No, I wanted to shout, not me. My foot stopped its nervous tapping as I solemnly requested, "How long; how long do I have?"

"Three years, probably less." She went on to explain that the time of transplantation would depend on the progressiveness of the disease and the effectiveness of the methotrexate. Mom must have read an article about parents donating part of their liver to their offspring because she implored, "Could I give her part of my liver?" Dr. Murray responded that this type of partial liver donation was not being done on adults. Meanwhile, I was trying to rationalize this time constraint. In three years, John and Michael would be 17 and 14 years old. Kids that age still need their mom. I needed to see Michael through high school. In my heart, I did not see transplantation as anything but a last ditch effort, the beginning of the end. Just about every liver transplant patient I personally knew had died from complications after their surgery. Ruth had narrowly escaped death and she was still in and out of the hospital with numerous complications. No. No transplant. The methotrexate had to work. It must. My children needed me.

That evening I held a tiny, white pill in the palm of my hand—methotrexate. Why, it’s no bigger than a saccharin tablet, I thought, as I stared at it with wonder. All my great expectations and hopes placed in such a little pill.

Now I had orders to have blood drawn every week. It was late October. By

November, there was no improvement. Deep inside, I continued to support the hope that the methotrexate would halt the disease and my liver would repair itself.

"Just a matter of time," I kept telling myself.

That December 1991, our liver support group had its annual "pot-luck" Christmas party. The get-together was going to be held at Ruth's mother's house. Although Ruth and I talked regularly over the phone, we had not seen each other since well before her transplant. This would be a reunion for us.

The evening of the party, I quickly scanned the house looking for Ruth. Her mom said she would be late. Once again, Ruth was hospitalized after a bout with pneumonia and was planning on a release that evening. As I wandered about talking to first one person, then another, I saw Mary Lee, the lady who used to come to support meetings with her oxygen tank. I hardly recognized her! Her coloring was rosy and she had gained weight. Although she had brought an oxygen canister with her, she wasn't using it. I heard her say she had undergone a liver transplant the year before and was gradually weaning herself off the oxygen. Maybe this transplant business was all right after all.

The house started to get crowded. I looked towards the door to see a thin, sickly-looking woman, an older woman, enter. There was something familiar about her.

Probably used to attend the support group meetings, I briefly thought when I heard someone call out to her, "Ruth! Good—you made it."

Oh, my God! I couldn't believe it. I didn't want to believe it. My shock was so great, that at first I didn't approach her. I hesitantly peered at her from the periphery of the family room. She looked around and caught my eye. I reservedly smiled. A rapid visual assessment revealed sparse hair and a shaky gait. I noticed that she had persistent tremors. It had been about 11 months since her second transplant. Fighting light-headedness, I slipped into the kitchen where a group of people started to congregate. Shortly, Ruth's mom called her to the kitchen to sign a paper. Grasping the pen with both hands, she quietly signaled to her husband who reached down and firmly held her arms steady while she struggled to write her name with two hands. I looked away, then turned and left the kitchen. Mom was calling to me, "Detna, come here. You have to see Linda." There was Linda Poe who had struggled for so long to recuperate after transplantation, full of energy and life. She was the lone survivor from the small group of patients transplanted at Hermann Hospital in 1985. Mom had told me that Linda was doing well, but this was phenomenal. Often, I was afraid that she wouldn't pull through. Once she walked with a cane. Now she was wearing high heels and a big smile. She looked—well—healthy. Linda explained that her first two years after transplantation were the hardest due to reoccurring complications. Many times during those first couple of years she felt so bad, she confided, that she questioned why she had lived. Fortunately, her complications were resolved over time and she actually started to feel good. I felt so confused. As we talked, I kept glancing towards the kitchen where Ruth was.

After serving ourselves buffet style, people sat in clusters around the house. While eating in the family room, I overheard bits of conversation including elevated liver enzymes, cyclosporin levels, high blood pressure, elevated blood sugars, mixed with mundane, everyday issues that concerned work and family.

"What an odd fusion of table talk," I thought.

Ruth was sitting with some other folks at a table across the room. There was an empty seat.

"What am I afraid of? After all, Ruth and I talk every week."

I grabbed my drink and plate and joined them. That's when I was introduced to Melanie. She was young. She was attractive. And she was a liver transplant patient. I was fascinated by her story: Shortly after having her fourth baby, (fourth...and she still looked like a girl!), she noticed swelling on the right side of her abdomen. After tests and a biopsy, her doctor discovered that she had primary liver cancer. The tumor was a very rare form of cancer that proved unresponsive to conventional therapy. She went to Baylor in Dallas where they evaluated and agreed to proceed with a liver transplant. Within four days after her evaluation, Melanie had a healthy transplanted liver. That happened almost two years earlier. Thoughts of Warren went through my head. But Warren's cancer had returned within months of his transplant, and Melanie had been out for a much longer period of time. Who can figure?

As we alternately talked and ate I grieved for Ruth. When she tried to feed herself, her hand shook so violently that it had a difficult time finding her mouth. I grew afraid that she would poke herself in the face. In between bites, Ruth was contributing to the conversation with amusing and not-so-amusing accounts of her ordeal in Dallas. As she talked and sighed and laughed, I recognized that inside the little wasted body that sat across from me was the Ruth I had known for years. I saw it in the eyes. No longer the reluctant spectator, I felt myself being pulled into the drama of transplantation. For a long time, I had convinced myself that I was different from the other liver patients. Now I realized, the only thing that made me different was my inability to face the inevitable: I was dying from PBC. The miracle I kept waiting for would not be a spontaneous cure or a magic pill; it would be a transplant. It was time to stop running.

End of the Road

Two roads diverged in a wood and I—

I took the one less traveled by,

And that has made all the difference.

~Robert Frost

Spring 1992: Every week, I stoically waited for the results of my lab work; still hoping the methotrexate might delay the transplant. That didn't happen. In January, shortly after the spring semester began, my bilirubin began to climb. Bilirubin is the reddish-yellow pigment found in bile, which is secreted by the liver. When bile cannot flow into the small intestine and be eliminated with food waste, bilirubin backs up and is absorbed into the blood. The excessive bile in the body is what makes the eyes and skin discolored. I fairly glowed from bile. Instead of yellow eyes, my sclera took on an orangish-yellow tint. One time my little nephew told me I had “rusty eyes”. I thought he described the peculiar color of my sclerae perfectly. During that period I felt compelled to wear sunglasses all the time. But sunglasses made my world look dark and dismal. My hair stylist suggested getting violet-colored glasses. She said that violet neutralized yellow. The next day I went to an optical store and was fitted for glasses with violet tinted lens. Sure enough, they did a remarkable job in masking my jaundiced eyes. I only wish I had bought them years earlier. Doctors should know these things! I thought.

My skin had taken on a dark, almost bronze look. The more fatigued I got, the more jaundiced I got. Often, my jaundice would increase dramatically by the end of the day. It tended to change in accordance to my level of fatigue. I felt like a chameleon. Whenever I finished taking a bath, I noticed that the tub was ringed with orange, not the typical soapy residue. The warm soapy water from the bath literally leached the bile from my skin.

Now, every day presented a struggle. I would wake up tired. At the beginning of that spring semester, I remarked to the woman over our department at Houston Community College, "Teresa, You need to start looking for someone to take over for me this spring. I'm getting sicker and don't think I can make it this semester."

"Sure your can, Detna", she tightly smiled showing clamped teeth. I had come to recognize that strained, pseudo-smile to mean: I don't want to hear it . . . I have enough to worry about. Teresa was frequently stressed-out by her job and outside activities. She didn’t mind using me as a confident when her life got complicated, but if problems regarding the radiology program arose, her jaw would tighten and through taut, smiling lips she would fairly hiss in exasperation, "You’re an intelligent woman, Detna. Just take care of it!"

I could tell she was not in the mood to seek out someone to replace me at that time. I didn’t have the energy to challenge her.

One day, about a month later, as I sat grading papers in the teacher workroom, Cissy, another radiology instructor, suddenly asked in her heavy southern accent, "Have you been losing more weight?"

It sounded more like an accusation than a question.

"I don't think so," I replied.

Actually, I had started to notice that all my clothes were getting tight around the waist. I thought I was gaining weight.

"Well, you look like you're losing weight to me. You look bad," she drawled on.

"I know, Cissy. I feel bad, but what can I do? My doctors make decisions regarding my health. I’ve talked with Teresa and she wants me to hang in here this semester."

"Just have yourself a liver transplant," she said very matter-of-factly.

What an insensitive bitch, I thought to myself. How would she feel if someone told her to go out and have a liver transplant as though it were no more serious than having an appendectomy? The nerve! Somebody needed to sign her up for a personality transplant. What’s wrong with the people in this department? I’d never worked with such a group of mean spirited women. If they weren’t talking about other instructors behind their backs, they were making fun of students in the teacher workroom.

That night before I went to bed, I noticed that my abdomen was more pooched out and rounded than I realized.

"Losing weight! Cissy must be wrong."

As I studied myself, I broke out in a cold sweat.

This wasn't fat, I realized. I had developed ascites, the fluid accumulation associated with end-stage liver disease.

When I went to see my hepatologist, Dr. Murray, that week I jokingly said upon seeing her, "Doctor, I think it’s twins. Seriously, my stomach is starting to pooch out. When I sit down I feel it touching my thighs!"

"That always happens to me," she honestly lamented.

I couldn't help but chuckle. Natalie Murray was a curvaceous woman. After examining me, she verified that I had developed ascites. There was more blood work. My condition was looking grim. The mental confusion that often accompanies end stage liver disease began during my last lecture before spring break. The topic of discussion was the circulatory system, one of my favorites. Strangely enough, I kept forgetting where I was in the lecture and where I was going with it. The students looked as confused as I acted. My words felt awkward and would come out mixed up. I constantly had to stop and turn my sentences around. Having worked in the medical field, I knew what was wrong. I had developed encephalopathy. This is a condition which can occur when the liver starts to deteriorate so much that it can not adequately filter toxins from the body, resulting frequently in mental disorientation, confusion and physical clumsiness. I felt frustrated and frightened by this additional symptom.

The following week was spring break. My lab values continued to go up. Dr. Murray finally said, "The methotrexate is not working for you and your disease is progressing rapidly. You need to have an evaluation with a transplant team."

"You mean this year?"

"Yes, I'm sorry, Detna. I going to call Dr. Sachs and have him take over from here. I've done all I can possibly do for you."

Resolutely, I left her office and went home. That afternoon, with a heavy heart, I called Teresa at the college where I taught and started making arrangements for a medical leave. She was uncharacteristically sympathetic and supportive about my leave. Later that day Dr. Sachs called. He scheduled a consultation for my family and me that week. During the consultation he explained that the survival rate for liver transplantation had steadily improved. He felt very positive about me having a transplant. Now I knew. If Dr. Sachs thought it was time, it was. I had come to the end of the road and now I must deviate and take the proverbial road less traveled. Funny, just 5 months earlier I thought I had at least 3 years. I still had so many things I intended to do. Why, I've never been to Australia. I haven't tried snow boarding. I haven't earned my doctorate degree. I've never met Oprah. I wouldn’t be able to join my archeology group for the dig in Copán. And what about my children? So much unfinished business . . .

Dr. Sachs set up an evaluation for me with the Dallas transplant team, but suggested that I also be evaluated by Dr. Patrick Wood here in Houston. Patrick Wood had transferred from a well-known, highly successful liver transplant center in Omaha, Nebraska. He was invited to restart the liver transplant program at Houston’s Hermann Hospital. At this time, the program was less than a year old, but Dr. Wood had been doing liver transplants for many years, Dr. Sachs informed us. Mom almost swooned with relief. Houston! So close to home. I think her mind was made up before we even met Dr. Wood. I, however, wanted to judge both programs.

The last week of March, I would have my evaluation with the Houston team at Hermann Hospital. The second week of April, I was scheduled to for an evaluation with the Dallas team at Baylor University Medical Center. Then I would choose.

"Dat's Too Much Blood"

If it's sanity you're after

There's no recipe like

Laughter.

Laugh it off.

~Henry Rutherford Elliot

Day one of evaluation at Hermann Hospital included a consultation with Dr. Wood, interviews with various members of the transplant team, and, yes, more lab work. My husband, mom, and dad sat in a hospital lobby with me. I would have brought Grandma too, had her health been better. I felt as though I was being prepared for a rite of passage and I wanted everybody there. As I waited, too nervous to read any magazines, I kept watch on the double doors of the large lobby. Medical personnel kept coming in and out of those doors. I decided to divert myself by trying to figure out which one was Dr. Wood. Here comes a woman in a lab coat.

"Nope, doctor's first name is Patrick. That rules her out."

Then an older, tall guy with stethoscope sticking out of his pocket walked in.

"Hum—maybe. Yea, he looks capable."

Later, a young, all-American, boy-next-door type came breezing through with his lab coat flapping behind him.

"Too young, must be a resident doctor."

Finally, a young woman came into the lobby and called my name. Good, I was getting tired of this "guess the doctor" game.

"Hi, I'm Linda Baumann, the transplant coordinator. I'll be taking you and your family back to meet Dr. Wood."

As we stood up to follow her she looked me over and candidly remarked, "We need to ‘pink’ you up!"

"Yeah," I admitted, "I seem to have a regular glow about me these days." I was feeling a little sarcastic.

"How do you pronounce your first name?" she asked.

“Dĕt-nă—short vowels. Sounds like," I pulled my earlobe, "retina!" I smiled.

"Hmm, unusual. I never heard it before. Are you named after someone?"

"Yes, my great, great African grandmother. She was originally from Tanzania."

My response flew right over her head.

She showed us into an office and there sat the all-American, boy-next-door guy! Without thinking I blurted, "You?!"

"You?" he shot back.

"Well, you look very young to be doing liver transplants," I honestly told him.

"You wouldn't want an old geezer doing your transplant, would you?"

"No, I guess not," I confessed as we all sat down. Gee, these specialists are looking younger and younger, I thought to myself.

"By the way, is your last name Wood or Woods?"

"It's Wood. There's only one of me," he said with a sly grin.

Playful sort, huh? Good thing I like that in a doctor. I looked over at Linda Baumann, but she sat there passively. I guess she was used to his smart mouth.

"You need a liver transplant," he stated and then went on to explain the many aspects of transplantation. We asked questions as he talked. Patrick Wood was very thorough and answered in a fast, straightforward manner. My head was whirling with information when he stopped talking, but I was impressed. As we were concluding, I noticed a button on his lab coat that read: "Wood Works".

"Yes, I bet he does," I thought.

This man seemed to exude energy. Being around him made me feel better than I had in months. Afterwards, mom said, "Detna, I like him!"

I knew it. He was the kind of guy all moms like. He got to me too, but I wouldn't commit yet. Actually, I was starting to feel like a rebellious adolescent. What I needed was time and space. All these well meaning people were taking over. Once I was on that operating table, strangers would be making decisions for me and doing things to me. I could already feel it happening and I wanted to stomp my foot and yell, "It's still my life!"

The transplant coordinator, Linda Baumann, gave me a lab requisition to take down to pathology. As I looked it over on the way to the lab, I noticed that box after box had been checked.

"My gosh! How much blood do they need?" I wondered. When I arrived in the lab a young woman accepted my lab slip, but as she read it her eyes started to bug.

"Oooh! Dat's too much blood! I don' wanna draw dat."

"Well then, please don't. Find someone who will!" I turned around and looked at mom with skepticism and raised eyebrows.

Another lab technician took the requisition. Her brow furrowed as she looked it over, then she went to the phone. I could hear her asking what color tubes to use for the various tests. Finally she got off the phone and started to collect the tubes. She called me back behind a partitioned area and had me sit down. To my right was a small table about 18 to 20 inches square. On it rested approximately 15 glass tubes with different colored stopper-tops.

"Are you going to fill all of those with my blood?" I asked.

"Yep, they're all for you. Hope you have a good vein".

I felt like swooning, but instead remarked, "I usually do—unless they went into hiding." Fortunately, my reliable veins popped right up and she started drawing tube after tube with no problem. As she neared the last several, my arm started to ache.

"Almost over," I she told me."

"I'm a terrible candidate for a transplant; I can hardly bear to have my blood taken."

"Don’t worry, honey. I’ve had grown men faint when I drew one tube," she chuckled.

Finally, she finished filling the last tube, loosened the band from my upper arm, and pulled the needle. What a relief. She had me hold pressure at the puncture site while she stuck labels on the tubes. Suddenly she let out a little gasp and said, "Uh-oh! I missed a couple".

"What?" I disbelievingly cried out. "You're kidding?"

"Oh, sweetie, I'm so sorry. I need to draw a couple more. We'll use the other arm."

I reluctantly offered my opposite arm while she took three more tubes of blood. As she was adding the last vial to the existing heap, I let out a little gasp as the colorful tubes started to cascade off the table to the floor. We helplessly watched as tubes struck one another and broke. It seemed like a scene from a movie being played in slow motion for visual emphasis. When it finally ended, all but eight tubes had broken. We looked at each other with wide eyes.

"You need a bigger table," I candidly stated as I put my arm out to be stuck again.

Meeting mom in the lobby on my way out, I admitted, "That first phlebotomist was right— that was too much blood!"

Monkey on a Leash

The only menace is inertia.

~St. John Perse

Day two of evaluation at Hermann, my best friend, Linda, accompanied me to the hospital. Linda and I grew up together on Galveston Island. We met in seventh grade when we were both still 13-years old. We weren’t immediately friends. In fact, we didn’t particularly care for each other. She had her friends and I had mine. Then one day after lunch I stopped by the girl’s bathroom to freshen up. That weekend I had just read an article in Teen Magazine that the best way to apply lipstick was with a lipstick brush. My mother didn’t even allow me to use makeup, but I had bought a beautiful Sunkist Pink lipstick on the sly at our local drug store. I didn’t have a lipstick brush, but I did have a paintbrush from art class. I swiped the brush in my lipstick, then carefully tried outlining the edges of my lips when Linda and two of her friends walked in.

“What is she doing?” one of them laughed.

“Oh, my gosh—is that a paintbrush? It is! She’s trying to paint her lips.”

“She is so weird!”

I realized how stupid I must have looked, so hurriedly put away my cosmetics and took refuge in a bathroom stall.

“I think we hurt her feelings,” Linda said. “Sorry,” she called out. “We didn’t mean to hurt your feelings. Come on out.”

I couldn’t face them and stayed in my safe haven.

“Come on out, Detna,” Linda urged. I said we’re sorry. Come on.”

Silence on my end.

“Oh, gosh.” Linda dropped her purse on the bathroom floor and slithered under the bathroom stall!”

I looked down at her in astonishment.

“Look who’s weird now” I said. We both stared at each other for a second and started laughing. And so our friendship began. Even then I knew I had just met one of the most thoughtful, compassionate people I was likely to know during my life.

As adults, life took us in different directions, but we always made it a point to talk once every several months. Just the same, I often thought about Linda and wished we had more time to spend together. But during the most intense times of our lives we were there for each other. As we drove to the hospital and absentmindedly chattered, I flipped through the memories we shared: slumber parties, first dates, prom dresses, confessions of first loves, first heartbreak, driving lessons, the death of her dad. I remembered our first night away at college and how excited and scared we were. We sat on our respective dorm beds. I was already longing for my home in Galveston and Linda missed her mom.

“Lin, I’m homesick and we haven’t even been here two hours.”

“Let’s not be sad, Det. I’ll play my flute!” She put her flute together and began playing a capricious tune. I started drumming on my desk in rhythm to her melody. Other girls on the floor began stopping by to hear the music. Soon our room filled with students, mostly freshman, like us. Some rushed back to their room to get their clarinets and other band instruments so they could join our impromptu band. We made a party of it and by evening we had met everybody on our wing.

How nice it would be to be college girls again. Our life was filled with expectations and anticipation of our futures. We’d return to the island during holiday breaks and drive down Galveston’s beachfront boulevard. Back then there was no destination. We would drive aimlessly, spotting friends, stopping at drive-in restaurants for hamburgers and fries, constantly laughing about everything. Now we had a destination. I wished we didn't.

In some ways, it was easier going to evaluation with Linda than my husband or parents. With her, I didn't feel as much remorse for getting this sick. Oh, the guilt! It seemed to burgeon daily. How could I worry my parents like this? Mom had high blood pressure. I knew my being sick was probably making her hypertension worse. Daddy looked as though he was in a daze. He was usually so animated and cheerful. And my children—they seemed confused and uncertain. They should be carefree and not subjected to undercurrents of worry from the adults. What about my husband? We were still in love. Despite yellow eyes and the fact that I resembled a dying houseplant, that man continued to care about me. That's right. I still amused him! My bond with Linda was different. Close as we were, she didn't stand to lose as much in the event I didn't make it through the transplant. True, she would lose a good friend who had constituted a big part of her past, but not a person who was an integral part of her daily life. She had her own family and concerns. Our emotional investment in each other was different than that of my immediate family's. Today, for a brief period of time, I could selfishly worry about myself without the additional burden of seeing the pain and anxiety on my family's faces.

My day began with an extensive interview with the transplant social worker. I was asked countless of questions pertaining to my family and home life. As I was to learn, it is extremely important for the patient and immediate family (or primary caregiver) to be emotionally stable and motivated to the transplant process and recovery. Of course the fact that behavior is affected by biological decline is taken into consideration. The team also realizes that families are depressed and frightened when facing transplantation. What they primarily need to ascertain is the overall emotional stability of both the patient and nuclear family in regards to daily living. Liver transplantation and recovery can be such a trial, that the physical and emotional support of family and friends is vital in the recovery phase. Those who have difficulty dealing with minor problems in everyday life would have grave difficulty coping with the ups and downs, which often follow a liver transplant. As we talked, it was gratifying to be reminded that it was okay, and even normal to feel guilty and afraid.

The social worker wrapped up the interview with one final question, “How much do you drink?”

Surely she doesn’t mean liquor. She knows I have a liver disease, so she must mean water. She wants to know how hydrated I keep myself. I gave it some thought before answering, "… about 16 ounces a day, give or take."

“Every day?” she asked.

“Yes, I try to.”

She gave me a bewildered look before asking, “What kind of alcohol do you consume?”

“Alcohol? I don’t drink alcohol! I’m a liver patient. I thought you were asking about my water intake. Why would you ask me about drinking alcohol since my liver disease is due to an autoimmune disorder and not alcohol abuse?”

“We ask all our patients,” she explained. “So you don’t drink?”

“Yes, I drink—water, milk, and orange juice, but not alcohol.”

Before she concluded our meeting, the social worker, recalling that I had grown up in Galveston, asked, "Oh, do you know Steve Katz? I believe he's from Galveston. He is one of the transplant surgeons here who works with Dr. Wood."

"Yes! Steve Katz. Wow, it's been years since I've seen him."

Steve was a year behind Linda and me in school. He always seemed like a shy boy. Because he was younger and ran with a different crowd than we did, he wasn’t on my radar during high school. What I best remembered regarding Steve was his mother, a wonderful Jewish cook. Every time my dad would go fishing and catch a surplus of fish he would bring some to Mrs. Katz. She in turn would make gefilte fish, an Ashkenazi Jewish dish made from a mixture of poached ground fish, onion, and matzoh meal. She would always send some to my dad. My father loved gefilte fish, as did I. Dad’s family was Jewish, but he married outside the clan and missed many of the traditional Jewish dishes he grew up eating. My mother was protestant and learned to cook a few of the Jewish foods from dad’s childhood, but she didn’t make gefilte fish. When I was a teenager Mrs. Katz gave me her recipe and I began making gefilte fish for dad. Steve Katz…I couldn't seem to summon a clear visual image of him in my mind, and made a mental note to look him up in my high school annual when I got home.

After my interview, Linda and I went to a restaurant across the street from the hospital for lunch. We ordered hamburgers and fries!

"Almost like old times," I told her.

It was difficult for me to eat much, but I managed to get down a few bites for old time’s sake.

"Hey, you know what, Lin? Steve Katz from high school is one of the transplant surgeons here. Isn't that something?"

"Det, I remember him. He was so quiet and young looking. He seemed younger than the rest of the boys, but a cute kid."

"Well, he's all grown up now and handling needles and scalpels. Those quiet ones really fool you, huh."

When we returned to the hospital, I was sent to the ultrasound department to have a scan of my liver. Linda walked there with me and took a seat in the lobby. I was escorted to a dressing room where I changed to a patient gown. A technician escorted me to an adjacent room, which was fairly dark. I was asked to lie down on a stretcher-type of table. She covered me with a sheet and pulled up the gown, exposing only my abdomen. Next she squirted some warm gel on my stomach and began running a fist-sized probe through the gel, smearing it all over my abdomen and lower chest.

"Stop breathing," she kept randomly requesting.

The problem was, she wouldn't tell me when I could breathe again. Finally, when I could hold my breath no longer, I’d suck in air or expel it in a burst. Then the tech would say, "Oh, yeah, breathe". After an hour or so of oxygen deprivation calisthenics, my annoyance started to grow. I'd had several previous ultra sound exams of my abdomen and liver and they never took any longer than 30 or 45 minutes. What was the deal?

"Are you a registered technologist?" I finally demanded.

"Yes," she assured me. "I'm just having a little trouble locating your inferior vena cava."

She's got to be kidding, I thought.

The inferior vena cava is the largest vein in the body. It receives blood from the liver and lower part of the body then transports it back to the heart. How could she miss the vena cava?

Either my vessels are transposed or this woman doesn't know what she's doing. I decided she didn’t know what she was doing. Finally, another tech came into the room to see what was taking so long. My technician told her that my "IVC" was difficult to locate. The other tech approached me, took the probe, and within a few seconds said, "There it is." She took a few pictures, handed the probe back to my tech and left. I was tempted to call out, "Please don't leave," but my tech took the probe and continued to push it into my skin and ribs for another 30 minutes. When I was at last released to dress, I heard the senior tech come into the scanning room again and ask, "Did you mark the margins of her liver? She's a transplant workup."

"No!" my tech answered. "I didn't know I had to do that. I didn't mark the margins on that child who's scheduled for a transplant either," she confessed.

I was so weary and disgusted, I said nothing and trudged back to the lobby where a distraught looking Linda was waiting.

"I was worried!" she exclaimed, "You were in there almost 2 hours!"

I looked back at the employees behind the counter as they talked and laughed, oblivious and apathetic to their department’s substandard patient care. Good heavens, I thought, I'm going to have a liver transplant! Does anyone here care? Apparently not, I reasoned, because they left an incapable (possibly a rookie) tech struggling with my scan for more than two hours, and still didn't have all the information.

That afternoon I went home with an uneasy feeling in the pit of my stomach. When my mother called that evening, I told her, "Mom, I don't know what to think about Hermann. I like Dr. Wood and the transplant team, but the ancillary departments need to shape up."

"You should tell Dr. Wood. He would want to know when there are problems so he can correct them. Remember, he can't possibly know or do anything about these departments unless patients tell him what's going on," she insisted. She's right, I realized, but I ended up discussing my apprehensive feelings with one of the transplant coordinators since Dr. Wood was seeing patients. Besides, I hated to bother him with complaints about ancillary departments. Surely, the coordinator could say something to the department's supervisor. I needed to know that I could depend on the proficiency and sensitivity of these people after my surgery. I wanted assurance that this hospital functioned well as a system and could be relied upon to perform competently when essential exams were ordered.

The following morning, I remembered to look up Steve Katz's picture in my senior high annual.

"Oh, sure," I smiled to myself, "Now I remember." There was Steve, a young boy with his almost black hair carefully parted and slicked over to one side. The picture brought him back and I remembered a serious boy, a reserved boy. I didn’t know him well, but he was someone from home . . .

Later that day I called the transplant team. Since Linda Baumann, the transplant coordinator I originally met was out of town; I spoke instead with the other coordinator, Marian, and told her that I had apprehensions about Hermann’s ancillary departments. I'm not sure what I wanted or expected to hear from her. Maybe something like, "We'll look into it," or "I'll let Dr. Wood know about this." Instead, she seemed unperturbed and offhanded about my concerns. Thinking that I hadn't expressed myself clearly, I went on to say that these incidents were worrisome and made me feel that I couldn't rely on their ancillary departments. She paused a moment as if to reconsider what I said and then frankly replied, "We'll, I'm sorry you're uncomfortable with us."

What? Her reply was clearly defensive and not at all constructive to the problem at hand. Hadn’t she ever heard the saying that if you’re not part of the solution, you’re part of the problem? As far as I was concerned she had just put herself in the category as a team member who was part of the problem. I already felt like a monkey on a leash. Was reassurance of proficiency too much to ask from the hospital with whom I might entrust my life?

Information Overload!

As we acquire more knowledge, things do not become more comprehensible, but more mysterious.

~Albert Schweitzer

That week I received a letter of acknowledgement for evaluation at Baylor University Medical Center in Dallas, Texas. The evaluation was scheduled to take place over 4 days on an outpatient basis. Baylor had a hotel, which was physically connected to the hospital and available to potential liver transplant patients and their families for $16.00 per day.

"Such a deal!" I told my husband, Ernie, as we drove to Baylor that Sunday, April 5, 1992. Despite the serious nature of our trip, a small measure of delight over the unexpected hotel bargain, gave me a sense of pleasure.

The next morning we met briefly with one of Baylor's transplant coordinators who gave us an itinerary of the evaluation process for the week. For the Baylor evaluation, I was scheduled to go through an orientation and diagnostic tests before talking with a transplant surgeon. There was a small group of potential liver transplant patients and their families having evaluations that same week. I couldn't help but notice that my eyes appeared more yellowed than any of the other patients. Drats! What a curse. I felt conspicuous even with my colored glasses.

At scheduled times, our evaluation group would meet each day for tours of the intensive care unit (ICU), 14th floor Roberts (the transplantation recovery floor), and Twice Blessed Apartment Units (the hospital apartments for transplant patients and their families during the waiting and recovery period). The staff at Baylor say that those of us who have transplants are "Twice Blessed", hence the name of the transplant apartments. The rest of the scheduled time, patient’s paths would crisscross as we each made our way from the central blood lab, to the radiology department, to the digestive disease lab, to the kidney center, or to the heart lab.

We were given a thick patient manual on liver transplantation that covered everything from the anatomy of the liver, to the operation, to life after transplant surgery. As I read through the manual that first night after my arrival, I told my husband, "Good heavens! Some of this stuff I'd just as soon not know, like: `Liver transplantation is considered to be the most difficult of all transplants.'" Wouldn't you know it! Why couldn't I have had something simple that needed replacing? It was the section that described all the tubes we would discover after "coming to" that really got me. There's a tube in the windpipe that is connected to a ventilator to help us breathe; there's a tube which goes down the nose to the stomach to remove stomach secretions; there's a urinary tube to keep the bladder empty, there are 3 drainage tubes coming out of the incision; there is a biliary tube to drain bile from the liver; there are tubes going into veins and arteries for medicines and blood samples. I would be buried under tubes! I would have to depend on the machines to which these tubes were connected to monitor me and keep me alive. I could only hope that their in-house biomedical engineers practiced regular preventative maintenance on the equipment.

By Wednesday, I had finished most of my diagnostic tests and consultations, and was scheduled to attend a support group meeting. At the gathering, we sat in a big circle. There were many people present, as each patient brought a "support" person along, usually a family member. Some of the people present were living at the Twice Blessed apartments waiting for livers; others already had their transplants. When doctors and patient agree to transplantation, the patient can't simply check into the hospital for a scheduled surgery. Patients must be placed on a list until a matching organ is donated. Those waiting expressed their growing anxiety and apprehension. Their lives had come to center around "the call" which would alert them that a matching liver was available.

Some of the support group attendees were family members with a loved one in intensive care, too ill to wait for a liver in Twice Blessed apartments. One couple flew to Dallas with their daughter who had to be hospitalized as she awaited a liver. Their daughter, who was in her late 20s, was seriously ill. Just before coming to Dallas, when she first started to get sick, her husband, who said that he couldn't deal with illness, left her and their young daughter. Her parents seemed stunned by these turn of events. Now they had relocated to Dallas with their granddaughter for an indefinite length of time in hopes of an operation that might save their only daughter. As I listened to the fearfully hopeful voices of family members, I realized that transplantation is not an individual undertaking. The lives of entire families are affected and put on hold. Older parents accompanied their sick adult child; adult children accompanied their sick parent. Entire families from all over the United States were living at the Twice Blessed apartments. Small children who accompanied parents were often privately schooled or tutored in Dallas so that nuclear families could stay intact during the waiting and recovery period.

One patient spoke out in anguish, "Why must someone die for us to get a liver? . . . I feel so guilty waiting for someone to die!"

The social worker responded, "They would have died anyway. Sometimes, transplantation is the one positive thing that can come out of a senseless, untimely death."

Nevertheless, this thought of knowing someone vital and healthy would die before I had my transplant haunted me for months.

Those who had been transplanted spoke openly about their recovery. A couple of fortunate people had a fairly easy time, with nominal rejection and no infections. Most, however, had experienced bouts of rejection, infections, and various other complications. One transplant patient said she was being treated for something called CMV.

"What's that?" an evaluation patient asked.

"It stands for cytomegalovirus", one of the patients explained.

No wonder they use an acronym, I thought.

She went on to say that many people carry the cytomegalovirus, which stays dormant in the healthy person. When the immune system is suppressed, like that of a cancer patient, AIDS patient, or transplant patient, this virus becomes aggressive and can invade various organs of the body. A few years ago there was no treatment for this virus and it was a dreaded complication following transplantation since it could ravage the body and the patient would die. Now, however, there was an intravenous medication called Gancyclovir that could treat CMV until the patient's own immune system got strong enough to keep the virus under control. Thank God for dedicated researchers and modern medicine.

I couldn't help but notice that most of the patients who had been transplanted had very rounded faces with puffy cheeks, which later I heard a patient refer to with dismay as her "steroid cheeks". I asked her what caused this swelling and she said it was caused by the prednisone, which is a steroid all transplant patients must take to keep from rejecting their new organ. That got all the patients talking about the evil side effects of the maintenance medications. The two primary medications that transplant patients must take for the rest of their lives are cyclosporine and prednisone. We rookies sat back in stunned silence as the transplant veterans discussed cyclosporine, which often causes high blood pressure, nasal congestion, increased cholesterol levels, and tremors. Prednisone, besides causing fat cheeks, can cause excessive weight gain, increased hair growth (on the face, chest, and arms, no less!), acne, elevated blood sugar, mood swings, night sweats, blurred vision, insomnia, and osteoporosis. Suddenly I foresaw images of fat, hairy, chipmunk-cheeked, manic-depressives sitting at a round table discussing their cyclosporin levels.

"Great," I inwardly moaned, "And I thought yellow eyes were bad! I'm going to look like a Neanderthal woman. No wonder people have mood swings after transplants. They're probably suffering from a major identity crisis."

The social worker, who probably noted my sudden pallor, told us not to get discouraged, because as the doctors lowered the medication dosages, the side effects would diminish. Those of us being evaluated continued to ask many questions.

"What did the incision look like? Was there a lot of pain after the surgery? Was it true that some post-surgery patients hallucinated from the potent drugs? How would we know if we were rejecting the organ?"

One post transplant patient stood up and proudly pulled up his t-shirt revealing an incision, which went down several inches from the bottom of the breastbone, then bifurcated, running under each side of the rib cage. I nervously nodded, with what I hoped was nonchalance as I took in his "Mercedes-Benz" incision (which it is humorously referred to due its resemblance to the luxury car's well known hood emblem). Another man who had recently been transplanted urged us, "Don't be afraid of rejection. There are many medicines to stop rejection," he emphasized, "and if they don't work, Dr. Klintmalm will get you another liver".

Dr. Goran Klintmalm was the chief surgeon and director of transplantation services at Baylor. Originally, he was from Sweden, but came to the United States as a young doctor. All the patients and nurses seemed to like and trust him. Three other liver transplant surgeons assisted Dr. Klintmalm. There was Dr. Bo Husberg, who was also from Sweden; Dr. Robert Goldstein, who, patients proclaimed was very cute; and the newest, youngest member of the team, Dr. Marlin Levy.

"What kind of medicine do the doctors give for rejection," we wanted to know?

"If the rejection isn't acute, they will usually 'recycle' you with high doses of IV steroids for a week, then taper off. If that doesn't work or the rejection is acute, they will give you the 'magic bullet'—OKT3, which blocks the body's T cells and stops rejection about 95% of the time."

Another patient went on to say that OKT3 was a very powerful, toxic immunosuppressant that is given for a limited time span of 14 days. Patients on OKT3 could have side effects, which range from fever, headaches, nightmares, and nausea to cardiac and/or respiratory arrest. This was their magic bullet? It sounded like a cannonball to me! I was amazed at how matter-of-fact and informed these lay people were. How could they be so blasé when speaking of respiratory arrest? By that point I came to fully appreciate the old adage: Ignorance is bliss.

A little later, the support meeting came to an end (which was just as well, since I figured I had all the support I could handle for one day). Next, all the evaluation patients were shown the Twice Blessed video. This was a film that followed several patients and their families who came to Dallas for liver transplants. The patients were interviewed as they waited for a matching organ. They talked about their liver disease and how difficult the waiting period was. As a liver became available for each patient, parts of his or her surgery were revealed. Next, the film showed the doctors making rounds and talking with the patients during the recovery phase. Finally, was the patients' dismissal from Baylor. Two of the patients they followed lived, but the third died shortly after surgery from renal complications. She was a young woman and had come all the way from Alaska with her husband. The film ended with a teenage girl getting a call from the coordinator to inform her that a matching liver had been found. As she hung up the phone, tears ran down her face and she said to her mother in a choked voice, "They have a liver for me." It was a powerful closing video for those of us facing this medical ordeal.

Ernie and I were unusually quiet on our walk back to the hotel. My mind was brimming with thoughts of transplantation, but one question continued to emerge: How would I react when my call came?

Last Laughs in Dallas

We are here for a spell; get all the good laughs you can.

~Will Rogers

Thursday morning of evaluation was my consultation with transplant surgeon, Dr. Bo Husberg. My husband and I anxiously waited in a patient examination room. No matter how many times I had been told that I was in end-stage liver disease, it was still somewhat shocking to be reminded of how sick I was. When I pictured myself, I didn't see the frail, yellow person I had become. I still saw the feisty, healthy person I once was. Self-images are difficult to let go of.

Shortly, Dr. Husberg arrived. He was a thin, attractive man with graying hair, possibly in his 40s. After introducing himself, he said to me, "Well, if you have to have a liver disease, PBC is the best one to have. Patients with your disease tend to do very well following transplantation." From there, he went on to discuss the surgery and asked us if we had any questions.

"He seemed pleasant," I whispered to my husband when the consultation was over and Dr. Husberg left. "Not as dynamic as Dr. Wood, of course, but very nice."

Before we left, one of the transplant coordinators stopped in and told us that the doctors wanted me to stay an extra day for a colonoscopy and ERCP.

"Oh, no! Not the tube again."

Yes, they intended to look at my entire digestive tract, from top to bottom.

That night I had to drink a gallon of a salty-tasting cathartic solution to clean out my colon. It was nasty stuff. Within an hour, I felt like a battle was taking place in my intestines. The battle lasted most of the night. The next day, which was Friday, I reluctantly went to the digestive disease lab feeling weak and cranky. It was our 16th wedding anniversary and I couldn't believe we were spending it in a hospital.

"For better or worse," I kept thinking. Well, this had to be the worst. I guess life will get better if I survive this transplant. Poor Ernie. Poor kids.

One of the nurses started an IV, then put me on a stretcher and brought me to the x-ray room.

"Don't give me too much of your knock out medicine; I like both feet on the ground," I wanted them to know.

"All right Mrs. Kacher. Here's a little something to help you relax," one of the doctors said.

"I'm fading away, you guys," I warned.

"Give her a little more," someone requested.

I felt so zonkered that I had to struggle to stay awake. Someone started to put a tube in my rectum and I experienced dull abdominal cramping. While trying to focus my eyes, I noticed a TV monitor, which apparently was displaying live pictures of the inside of my large intestine.

"Look!" I exclaimed and tried to ask, "Is that me?"

The picture was in color too! I started to feel a pressure, as though air was puffing through their scope and inflating my colon.

"There's a polyp," the doctor announced. He sounded kind of excited. Then, zap! He removed it with his scope.

"Wow! That didn't even hurt," I told them.

Soon, they removed their tube, sprayed the back of my throat with their gag reflex inhibitor and started to push the scope down my esophagus. Hope they changed out tubes, I drowsily thought. The tube had a difficult time going down. Over and over I would gag and sputter.

"Hey, where's Dr. Sachs?" I tried to ask. Their spray definitely was not working. Every time I gagged, I'd expel air from the opposite end!

They did puff air in me, I realized. Now I have flatulence, and it's all their fault. How humiliating.

Someone must have given me more sedation, because the next thing I knew, the exam was over and the resident doctors were wheeling me out of the room. I started saying, "I don't think I liked that. You guys shouldn't puff air in patients that way."

I could hear them chuckling and one of the doctors leaned down and whispered, "We haven't had anyone as funny as you in a long while, Mrs. Kacher".

"Funny! Y’all think that was funny? I'm being perfectly serious here, you guys. You must be hard up for laughs today."

Later that morning I recovered from the sedatives and dressed to leave. I tried to summon as much dignity as possible when the doctors stopped by before dismissing me. Sitting with my back stiff and very straight, I put a solemn look on my face as I tried to ignore the twinkling amusement in the eyes of the resident doctors. All right, I thought to myself, so it was a little humorous. As I replayed the colon incident in my mind, a conciliatory smile tugged at my mouth. The residents exploded in a fit of laughter. We all laughed until tears ran down our faces. Gee, the thought of me, Detna Kathleen Kacher, breaking wind in public . . . it was admittedly funny and liberating—in a twisted way.

The Choice

If you can look into the seeds of time and say which grain will grow, and which will not, speak then to me.

Shakespeare, ‘Macbeth’

On the drive back to Pearland, Ernie and I endlessly discussed the virtues and deficits of each transplant team. Which one should we choose? It never occurred to us that either team might turn me down as an appropriate candidate for transplantation!

"I don't know Ernie, as far as surgeons go, I really liked Dr. Wood. He has energy, a passion about him. If I choose Hermann, it's a sure thing that Dr. Wood will perform my transplant. If I choose Dallas though, any of their four doctors might do my surgery."

"That's true, but their ancillary departments seemed better organized than Hermann's," he reminded me.

"Yep, Hermann did make me feel ‘uncomfortable’ in that respect. But overall, I was impressed with Hermann's nuclear transplant team. Besides Houston is so close to home. If I went to Dallas, I'd have to stay there 3 months while I recovered. That's a long time, and what about the kids?" We sat in silence for a while.

"On the other hand," I reasoned, "the Hermann program is just a year old. Dallas has been doing liver transplants now for over six years and they have a good track record. All of my Houston support group friends were transplanted there."

"Yes, but Dr. Wood has been doing transplants for many years before he opened the center in Houston," Ernie reminded me.

"I know. Of course, when you have to undergo something as big as a liver transplant you need to look at the hospital in its entirety, not just the surgeon," I put in. We went on in that fashion for the next 4 hours that it took to get home.

The following week, I called my brothers. Since they had some distance from this transplantation business, perhaps they could help me sort through my dilemma. I told them about both institutions.

"If I go to Dallas, it is going to kill mom. She has her heart set on Houston and Dr. Wood. It is much closer and will be easier on the family."

Finally, my younger brother said, "Detna, just remember, this is not an operation of convenience". We left it at that. My brother was right. Convenience could not be the primary factor. Without telling me what to do, his statement helped me sort through the emotional debris and work towards a comfortable decision. Ultimately, I knew the final decision had to be mine.

All weekend I pondered over Hermann and Baylor. Every time I thought seriously about staying at Hermann, I would remember Janice Smith, Brian, and Warren; all of my support group friends who died there after transplantation. Those thoughts constituted a psychological barrier I could not seem to cross. But Ruth, Mary Lee, Charlotte, and Melanie went to Baylor in Dallas and lived.

"Be reasonable," I told myself, "Dr. Wood wasn't at Hermann when those other patients were. Besides you really like him." But the ancillary departments . . . those incidents continued to nag me. And with that final thought, I chose. The transplant would be done in Dallas.

Putting Your Life on Hold

I ache, I sigh

I'd like to cry

Or scream out loud

And not be proud.

But here I sit caught in this void span

Silently waiting, few demands,

Hoping that someone will grasp my hand

And understand . . .?

~D.K.

Summer '92

Once a transplant team has approved a patient for surgery, that patient's name goes into a regional recipient registry. In turn, regional registries across the nation list their patients with United Organ Sharing agency (UNOS), which is the national recipient registry. Patients on the registry are ranked as 1 through 4 according to their state of health (a 1 being top priority for transplantation, as opposed to a 4 which is low priority). Patients refer to this registry as "the list" and there is much discussion about who is where on "the list".

Understanding placement is complex and often emotional for patients and their loved ones. Those who are most ill receive a higher ranking and placement on the list. Those who are not as ill are placed at the bottom of the list, but in time move up as patients ahead of them are transplanted. A number 4 denotes a patient who is ill but not in immediate need of a transplant. These patients are still able to function at work or home and will need an organ in the future. Number 3 ranking represents those patients who are too ill to work, yet able to function at home. They are expected to need a transplant in the near future. If a number 3 patient has to be hospitalized, that patient becomes a number 2; but if the patient is released to go back home, he or she once again reverts to a number 3. A number 1 ranking is a top priority across the nation. Those who are a 1 are in immediate danger of dying. Patients who are ranked a 2 or 3 usually receive a regional organ when the time comes, but when a patient is ranked a 1, there is an appeal for a matching organ across the country and those patients could receive an organ from anywhere in the United States. Despite a class 1 status, a patient does not have precedence over lower ranking patients who reside outside his or her region. Out-of-region organs are first made available to those listed in specific regions and offered to outside regions only if the region where the organ was procured cannot use it.

Other factors that affect how long a person might have to wait for an organ are patient blood type and physical size. Sometimes a patient who is not as sick as others might be transplanted sooner because an organ becomes available which is specific to his or her blood type and size. Other times, a person who suddenly becomes acutely ill might not wait any longer than a day or two to receive an organ due to the seriousness of his or her condition. "The list" is always in flux as a patient's health status changes.

Once a patient is registered, that patient is given a beeper so that he or she isn't completely housebound by the phone. Waiting transplant patients must be available and ready at any given time or place, to rush to the hospital and be prepared for surgery. An organ could come in days or months. Some patients end up waiting a year or more. During this time, they are placed in limbo, their lives on hold.

Initially I was ranked as a number 3. The Dallas transplant team told me that I would probably receive my call within 4 months. Since I could fly to Dallas in an hour's time, the transplant team gave me permission to wait for my call (or beep) at home. Patients who live further away than I, had to move to Dallas and live in Twice Blessed Apartments while they waited since organs can only be preserved for limited periods of time.

Waiting is challenging. Every day upon awakening I would wonder, "Is today the day?" When the phone rang, I found myself answering with both hesitation and anticipation. My life merged into a mixture of anxiety, boredom, and fatigue. No matter how tired I felt, however, I would make myself get up each day, shower, then go downstairs and try to eat a little something to alleviate the ennui. Often, this chore would so exert me that I would retire to the couch and curl up in front of the television. With the portable phone clutched in one hand, I would drift into a heavy sleep for hours at a time. The phone had become my connection to the outside world and a symbolic instrument of pending salvation.

On good days, after taking a morning nap, I would sometimes make a short excursion to the grocery store or pull a few weeds in the gardens. Occasionally, I'd spend long periods of time putting puzzles together. I tried reading, but was too distracted and confused to follow the characters and plot. Ernie and my parents urged me to stop driving, but I resisted. Driving still offered me a small measure of independence. Besides, I always stayed in town. One day I decided that I felt well enough to drive to the local grocery store. As I tried to back down the driveway in our van, the wheels would go from one side of the driveway to the other like a sailboat tacking into the wind. I'd stop, pull forward, straighten out and try again.

"Boy, this is a long curvy driveway," I said to myself. Finally I maneuvered the van onto the road, turned on the radio and felt a surge of freedom and confidence as I headed down the street.

"Ha! Ha! I'm still in control here. I hate it when mom and Ernie try and tell me what to do."

Suddenly, my hands started to cramp from griping the steering wheel; each finger frozen in a painful spastic contortion. My muscle cramps had gotten progressively worse and were no longer limited to my feet and legs. They were almost intolerable at times.

" I hate it when this happens!" I complained to myself as I tried to rub my palms against the steering wheel for relief.

Once inside the grocery store, I got so tired after shopping one aisle that I grew afraid of collapsing, and thought I would have to abandon my cart and leave.

"Come on Detna," I told myself, "You can make it." Without warning, I began feeling disoriented. I was lost in a grocery store I had shopped at for years! I tried not to panic, although I knew that something was wrong. Tears rolled down my cheeks, as I stood by the canned goods trying to figure out what to do. Another shopper walked by and asked what was wrong and if I needed help, "Yes, I need help. I'm sick." She and one other woman stopped and I tried to explain to them that I was waiting for a liver transplant and sometimes got tired and a little confused.

"Where do you live?" they wanted to know. "Can we give you a ride home?"

"I can't exactly remember," I told them. The numbers of my address were all jumbled in my head.

They found my driver's license in my purse and walked me through the parking lot until I located my van. One lady drove me and the van home, while the other followed in her car.

"Good luck, honey," the older lady said after seeing me safely inside. Was she a neighbor? I dropped onto the couch and slept until the children returned from school.

"Hi, mommy. Are you okay today?" they wanted to know.

"Yes, mommy's fine," I reassured them.

But I wasn't fine. It was one thing to be physically incapable, but to lose my mental faculties; that was almost more than I could bear.

The children made themselves a snack and went to play before their dad got home. They had gotten used to taking care of themselves recently. Since they were little, I had been teaching them how to be self-reliant in the event I got seriously ill. Now that time had come. They were not only taking care of their own needs, but often times taking care of my needs as well. It made me sad.

"This isn't how it's supposed to be," I sorrowfully thought.

I woke to sounds of Ernie in the kitchen. Now he did most of the cooking.

"Hi," I called out.

"Hi, yourself. How was your day?" he wanted to know.

"Ernie, I had a bad day," I confessed, but I didn't tell him about my disastrous trip to the store. I knew I wouldn't be driving any more though. Listening to Ernie cook and the children play, I realized how dependent I had become. I began to feel like a burden. I couldn't even trust my own judgment anymore. My children contributed more to the functionality of family life than I did. They were looking after me when I should have been looking after them. This acknowledgment marked a slow, steady erosion of my self-confidence.

"Get hold of yourself, gal," I told myself. "If all goes right, you will be well again."

"But what exactly does one do when your life is on hold and your mind is turning to mush?" I wondered.

So, I did what others pre-transplant patients did before me—wait in silent anguish.

Changes

Would that life were like the shadow cast by a wall or a tree, but it is like the shadow of a bird in flight.

~The Talmud

Some days, I actually felt kind of energetic. On those days I would venture outside, water the flowers and pull some weeds. Whenever I experienced these good days, I'd think, "Don't call. I feel too good. Let me have today." But on days that I felt bad, I'd agonize.

"Why don't they call? I'm ready. I wish they would just call."

Fortunately, my family and friends checked on me frequently. This kept my spirits up. Two of my former college students, Kathy and Judy, would stop by every week. They were always doing thoughtful little things to distract me. One time they brought over a bouquet of bright metallic balloons. A month or so later when the balloons started to droop, they had them refilled. Once again, swollen with helium, the balloons playfully bobbed when the air conditioning would cycle on and off. They looked so pert and carefree.

Kathy, Judy and I would sit for an hour or more and laugh and talk until I got too tired to continue. I wouldn't mean to, but oftentimes I'd fall asleep on the couch in the middle of a conversation. With concerned expressions, they'd touch my shoulder and tell me goodbye. I would usually rest in a heap on the sofa, too weak to walk them to the door and too tired to feel embarrassed. Yet, somehow in my clouded mind, I was able to appreciate the fact that the best thing to come out of my teaching experience was the friendships.

Frequently neighbors and friends would phone and want to take me to lunch. They knew I was basically housebound. Getting ready for these modest outings took me all morning, as I had to recover my strength after showering. I was always happy to be around people, but the problem was, my friends would never let me pay for my lunch. Each and every one insisted on picking up the tab during this waiting period. I began to feel like I was being treated to "a last supper" each time I left a restaurant. What a waste since I couldn’t tolerate much food. I'd be exhausted after the outings and fall to the couch when I got home, not moving from that spot the rest of the afternoon. Despite the physical fatigue, the short excursions were emotionally uplifting. Now I visited with my friends more than I had for years. Too bad people put relationships on hold when their lives are "normal". If only I had enjoyed the company of my friends while I was still fun and had energy.

Over the next couple of months, our home started to fill with plants, cards, and other thoughtful gifts. Sometimes I would wander around the house observing these tokens. I could feel the collective concern and outpouring of affection, which gave me a spiritual energy.

In the meantime, Ruth urged me to start attending liver support group meetings again. They met once a month on Saturday afternoons now. Her doctor, Margaret Bridges, also attended the meetings. For the past year, Ruth repeatedly encouraged me to start seeing her physician. Dr. Bridges not only followed people with liver disease, liver transplant patients were one of her specialties. She had trained with the Dallas transplant team so that she could better follow her post-transplant patients. The surgeon I consulted with in Dallas, Dr. Husberg, also suggested that I consider see Dr. Bridges after transplantation. Ironically enough, our neighbor, who just a year earlier had been very ill with liver failure, was also under the care of Dr. Bridges. He and his wife frequently talked about what a wonderful physician she was. Houston is a big city filled with many doctors. Was it a coincidence that I had been hearing about this doctor for a while now; was it an omen? Leaving Dr. Sachs after all these years would be difficult. Could I like and trust another doctor as much as I did him? I didn't think so, but I decided to go to a meeting and at least meet Dr. Bridges.

Early that month, my husband and I went to liver support group once again. It had been a long time. I was encouraged by Ruth's progress when we got to the meeting place. In a few short months, she had put on a little weight and looked much better. Mary Lee was there without any oxygen at all. Melanie, whom I had just met at the Christmas party, was present with her husband and children. She was the patient who had liver cancer two years earlier. There were a couple of other members I vaguely remembered from earlier support meetings and a few people I'd never met. I noticed one patient in particular looked exceptionally healthy.

"Look at her. She doesn't even have steroid cheeks!" I whispered to Ernie.

We all sat around a large rectangular table. A social worker asked us to introduce ourselves. One lady introduced herself as Charlotte. With surprise I realized that this was the same Charlotte who came to the earlier support meetings. I hadn't seen her for 5 years or more and wouldn't have recognized her. She too had a transplant two years earlier. Her face had filled out and she no longer looked thin and frail. Her husband, Pat, who used a wheelchair, was also with her. I noticed that he still had wild, wiry hair and that cynical, amused look about his eyes. He reminded me of an eccentric professor. The lady who looked "exceptionally healthy" was Dr. Bridges! No wonder she didn't have steroid cheeks.

After introductions, people shared their feelings about life after transplantation. Many asked me all about my upcoming transplant and I actually found myself telling them about some of my fears. They seemed to understand what I was going through and were very reassuring.

"I am afraid of being on the ventilator," I confessed. The thought of a machine breathing for me was frightening.

"Don't fight the ventilator; go with it and you'll be fine," Melanie advised me.

"That's right, go with the ventilator," the others agreed.

One transplant patient, Robert, was telling us that since his transplant, he felt he had taken on some of the behavioral characteristics of his donor. Everyone smiled at him tolerantly, including Dr. Bridges. His wife just rolled her eyes and shrugged her shoulders.

The guy's a real nut! I mused. Taking on the behavior of his donor—right!

Most of the patients at the meeting were under Dr. Bridge's care. I could see that she was close to them. Could I like her as much as I did Dr. Sachs? She was probably more suitable for post-transplant care. Anyway, I had grown too dependent on Dr. Sachs. I carefully studied Dr. Bridges and saw an open, unpretentious, compassionate face. Maybe in time . . .

The following week I placed a call to Dr. Bridges' office.

"Would you consider taking me on as your patient?" I asked.

Calling her office was a monumental step, which prefaced a chain of new events and marked acceptance of the uncertain path I had finally come to accept. This transplant would grow to include many new health care professionals. Connecting with Dr. Bridges established vital step towards the mental preparation I needed in order to move into this frightening medical arena. I was happy when she accepted me as her patient, but I would sure miss Dr. Sachs and his funny little quips.

Wind Beneath My Wings

I was sick, and ye visited me.

~Matthew 25:36

Spring turned to summer. There was no word from Dallas and my wait extended beyond three months. Today, it didn't seem to matter because I was feeling good.

"I know, I'll rest this afternoon and cook dinner!"

Later that day the children sat at our kitchen island drawing and folding paper planes while I began pulling food out of the refrigerator. They were excited to see me feeling so well. I sat down on my faithful stool and started to prepare one of their favorite dinners, chicken fried steaks. Ernie was sure surprised when he got home and saw me cooking. We all laughed and joked.

Maybe I'm getting better, I let myself think.

I reached to flip the steaks over when, "beep, beep, beep".

"Oh, my gosh!" I squealed. "What is that? Is that my beeper? Maybe it's your pager, Ernie."

But it was my beeper. I handed my husband the spatula and went to the phone. I was so nervous that I had to stop and re-punch the phone number for Baylor three times before I got it right.

"Transplant Services," a woman answered.

"Yes, my name is Detna Kacher. I'm waiting for a liver transplant and my beeper went off,” I anxiously recited.

"Let me check with one of the coordinators and call you back," she said. She took my name and number and we hung up.

"They'll call me back," I repeated to Ernie and the kids.

Our youngest son, Michael, asked, "Mommy, could you tell them that you can't take this liver? I'm not feeling good today. Tell them you'll have to take another one," he pleaded.

Just then the phone rang. It was one of the Dallas transplant coordinators.

"Mrs. Kacher, I'm sorry. We didn't beep you. Sometimes those pagers unintentionally go off. You did the right thing by calling, but remember that we will always try to reach you by phone first. If you aren't home, then we'll beep you."

"Don't apologize," I insisted. "It's fine. Really."

Actually, it was more than fine. When that beeper went off, I felt like a pig being led to the slaughterhouse. Oh my. I thought I had come to terms with this transplant. What's wrong with me?

The next day, I couldn't get the beeper incident off my mind. Why did I react that way? Then I did what I had come to do for the past several years when I felt scared or depressed about my illness—I called Dr. Sachs!

I felt better just hearing his voice. As I finished my "beeper" story in a flurry, I blurted out, "Do you make house calls?"

"Yes," he answered, after a brief pause.

He would come over. When we hung up, I felt weak with relief.

"He'll come over," I repeated to myself. "God he's compassionate. Everything will be okay now. We'll talk. I'll be able to make sense of this thing."

That weekend, Dr. Sachs drove to Pearland and spoke with our family. As he talked about the transplant, I began to put my life in order again. He sounded calm and confident.

"When the beeper goes off," he explained to the children, "it's a good thing because your mom has a chance at a better life."

He helped Michael understand that when the call came, I had to leave. There could be no delays.

Afterwards, Michael challenged Dr. Sachs to a game of Ping-Pong. The first game was Michael's, but Dr. Sachs won the next two, which kind of surprised me. I'd never thought about him handling a Ping-Pong paddle so well, just needles and scopes. As Dr. Sachs was leaving, Michael whispered with admiration, "He is vicious! Can he come back?"

"Vicious"? Was that supposed to be a compliment? I watched this gentle person, my doctor, my friend, as he climbed into his car and I knew what I had always known from my first office visit: he was unique among people—truly, the wind beneath my wings. From that day on, I noticed that Michael seemed much calmer about the transplant. I did too.

"Step on a Crack . . ."

I'm not ok—you're not ok, and that's ok.

~Rev. William Sloane Coffin

Over the summer, my memory started to worsen. One morning while opening a kitchen cabinet, I discovered half an onion, neatly sealed in a plastic bag, sitting next to the glasses.

"What in the world is that doing here? Did I do that?" I didn't remember putting an onion in the cabinet, but I knew I must have.

Every day was an adventure. I never knew what inappropriate place I'd find our food, dishes, or clothes. Ernie and the children would patiently hunt for household items I had "put up". I not only misplaced things, I was misplacing entire incidents somewhere in my head. All too often my family or friends spoke of events, which I had little or no memory of. I found this most disturbing. In the beginning, I was hesitant to admit that my memory had gotten so confuddled. My frustration grew until at last I confessed to my mother, "Mom, my memory has gotten terrible. I’ve developed encephalopathy, you know? Half the time I can't remember where I put things. Why, just the other day I found half an onion with the juice glasses!" Every week I was relating strange incidents and lapses of memory to my mother.

"Oh, we all do things like that," or "You're just preoccupied," she said with conviction.

Now, these statements really bothered me. Why couldn't she admit that these episodes were not normal absent-mindedness or preoccupation? I felt she was trying to calm or pacify me, when what I wanted was validation that I was getting worse. I needed to look into the eyes of this person, my mother, my most trusted friend, and see acknowledgement of my physical and mental deterioration. I craved this recognition, this truth, this additional reinforcement, that the road I was taking was inevitable and necessary.

Oh, mom, can't you face it? I'd sadly wonder.

But mom was too close to me. I'd look at her and she would mirror the same doubts, fears, and denial I too used to feel.

More worrisome than the forgetfulness, was a compulsion I gradually acquired for keeping things in perfect order. Sick as I was, every day I carefully inspected our pantry to assure myself that all labels on the canned goods were facing outward. Beans had to be placed next to beans, corn by corn, and all tall items strategically placed in the back. I had always been an exceedingly neat person, but this was different because my obsessiveness was held in place, not by a desire to have things orderly, but by superstitions surrounding the outcome of my transplant. For instance, if I found the peas facing the wrong way, I would quickly turn them around and think, "NO! Everything must be right; then my transplant will go okay." The wildest superstition I came to embrace involved heating food in the microwave. When foods are finished in our microwave oven, it beeps three consecutive times. This beep can grow obnoxious, and frequently if I was standing by the microwave when it finished its heating cycle, I would remove the food before or during the beeping process just to avoid the redundant abrasiveness of its call. However, while waiting for the transplant, I came to feel that I must reach the microwave and open its door before that third beep.

"If I reach the microwave before it stops beeping, I'll live," I'd assure myself.

Every day, I would heat something in the microwave and purposely distract myself in the kitchen, all the while trying to judge when the cycle would be completed. Then I'd rush to the microwave and try to yank its door open before it finished beeping. It became an emotional Russian roulette I would subject myself to daily. If I got to the microwave "on time", I would sigh with relief and reassure myself that everything was going to be fine. The few times the third beep would sound off before I reached the microwave door, I felt dread and fear. Then I would be compelled to heat something else, so that I could right the wrong.

I had never been a superstitious person before, and now I felt like a little child, intentionally plucking petals from a flower—"He loves me, he loves me not...I'll live, I won't live". I knew it was irrational and crazy, but I couldn't make myself stop. How was it that something, which was merely "obnoxious" had evolved into this superstitious, emotional game? In my limited experience, "normal" folks usually maintain the order that structures their lives with religion. Why had I chosen to maintain the order of my existence with superstition? It didn't make sense and was starting to wear me out. I could rationalize my neatness because intellectually I realized that strict order is a reaction to the chaos overshadowing someone's life . . . but this superstitious mumbo-jumbo? It was too much!

Each day after Ernie would leave for work and the children would go play, I'd walk my weary little self around the house and make sure everything was in its place. If one could have quantified the order I tried to bring to my restricted world, it probably would have been an accurate indicator of the storm in my mind. Yes, my pantry was a showplace; but I dare not step on a crack.

The Call

Life begins on the other side of despair.

~Jean-Paul Sartre

As July was coming to an end, I began to wonder if Dallas would ever call with a liver. By then I was having difficulty with my breathing and noticed my feet and hands frequently turned blue. Weekly trips to the doctor's office were exhausting. On those days, mom and dad would drive me into Houston. I would sleep in the car on the way there, have blood drawn and see Dr. Bridges, then sleep on the 40-minute trip back. I was sleeping my life away and couldn't seem to help it. Now, I no longer jumped with trepidation when the phone rang. It occurred to me that I might get so sick by the time Dallas called that my chances of recovery would be jeopardized. The fear I once felt about getting my call was turning into a fear that I might not get called in time. Once my doctors decided I needed a transplant, they encouraged me to get on the list as soon as possible since patients who are extremely ill often have a difficult post surgical recovery or die. At support group in Dallas, several family members had talked about their loved ones not getting on the list when first evaluated. They chose to wait. Their reasoning was they might die during or soon after the transplant, whereas, by waiting, they could have a year or more left. It is an anguished gamble all potential transplant patients face. Sometimes those who delay get so sick that they have to be hospitalized and are given a priority ranking since organs go to the sickest patients. The tragic irony is that some of these patients won't survive the operation because they have become so ill that other organ systems start to fail. Just the same, they can jump ahead of those patients who have been on the waiting list for months and have a far better chance of recovery. As my condition deteriorated, anger filled my gut.

"Why is this happening to me?" I'd ask my husband. "I have done everything the doctors advised. When they told me it was time to go on the list, I was scared, but I did it. These patients who put off transplantation until they are so sick that they get a priority ranking make me mad."

I wasn't thinking about the many people who have no knowledge of an existing illness and suddenly get acutely ill. Anxiety and despair were taking over. But even in my desperation,

I felt guilty for resenting those who jumped ahead of me. Deep inside I knew that a part of me wished I had been so sick by evaluation, that I was spared this painful wait.

At home, I had limited my time downstairs to a brief lunch with the children. Afterwards, I'd go back upstairs to our bedroom, resting every few stairs to catch my breath. When I got to the bedroom, I'd pointedly ignore the bed and go straight to a sitting area off the bedroom where we kept a sofa and television. No way would I put myself in bed all day. That would mean I was really sick, and I couldn't allow myself to be too sick because I might not recover from the transplant. In my mind, it was okay to languish on the sitting room sofa with pillows and a quilt. When I wasn't sleeping, television was my reality.

Sometimes, I'd catch myself talking to the T.V. One afternoon, the talk show topic was about women who were bored with their lives.

"Try waiting for a liver! Now that is boring." I yelled at the T.V.

"Mom, are you all right?"

"What? What's wrong?" I called back.

"Who are you talking to?"

"Oh . . . just the T.V., honey, just the T.V."

Gosh, I felt better though. I had wanted to tell somebody off for a long time. Ha! I wonder what's on Oprah today?

Just then the phone rang. It was Dr. Sachs calling to see if I had any word from Dallas. He knew I was getting discouraged. Even though I was under the care of Dr. Bridges, Dr. Sachs and I still kept in touch. I continued to think of him as my doctor. Right after we hung up, my husband phoned to tell me he was on his way home from work. As soon as I put down the phone, it rang again. Ernie had probably forgotten to tell me something.

"Detna Kacher, please."

"This is Detna."

"This is Sharon Anderson with Baylor Medical Center in Dallas. I think we have a liver for you."

She thinks they have a liver for me? Is this my call?

"Well, do you or don't you?" I wanted to know.

"We do, but we’ll need to run tests on the liver to make sure it's suitable. You'll need to come to Dallas right away."

This was it, the moment I'd been waiting for. Why did I feel stunned?

"Oh my gosh," I finally replied, "I can't believe it. All right—I'll get flight reservations right now. Oh my gosh!"

"Could you call me back as soon as you have the reservations and give me your flight number and time of arrival?"

"Yes, yes I will. And . . . thank you."

But before we hung up I had to ask, "What of the donor? Who is my donor?"

"The donor is a twenty-one year old female from Longview. She was in an auto accident."

"Oh--okay." So young!

After hanging up, I sat on the couch for a few moments before fully realizing that my waiting was over. The call of a lifetime had finally come. Closing my eyes, I tipped my head back and muttered, "Thank you".

Destination: Dallas

All changes, even the most longed for, have their melancholy, for what we leave behind us is a part of ourselves; we must die to one life before we can enter into another.

~Anatole France

July 27, 1992: Months of planning were suddenly put into action. I quickly placed a call to my husband, reaching him right as he was leaving work.

"Dallas called! Yes—just then! They found a liver for me and we have to leave as soon as you get home."

Airplane reservations were made; family and friends were systematically called. Mom picked up the phone on the first ring.

"They have a liver for me, mom. It's here,” I simply stated, trying to keep my composure.

"Ozzie!" she shouted to my dad. "Dallas called! They have a liver. We're leaving now," she assured me.

Mom and dad would be moving into our house during my hospital stay so that Ernie could be with me in Dallas. During the weeks that Ernie would return home to work and stay with the children, my folks would drive to Dallas and help look after me at the Twice Blessed apartments.

Next I called my best friend, Linda, who would alert our friends; then my former students, Kathy and Judy, who would notify the college where I taught. I was disappointed when each time, an answering machine picked up my call. This was probably one of the most important messages of my life, and I heard myself emotionally vocalizing into a machine.

"It's here, you guys! I have a liver."

After that, I was amazed at how calmly I completed each of my pre-planned tasks. A few last minute items were thrown into a suitcase that had been packed months earlier.

"Should I bring my lipstick? Sure. Wanna look good after surgery." I felt charged. No more yellow eyes! "Might as well include the mascara."

As I shut the suitcase, anticipation, excitement, and fear started to saturate my body, feelings like I experienced when I journeyed to the hospital to birth our babies.

"This time, when I return home with a new life. It will be my own."

Reaching down I stood the suitcase up and realized with amazement that it was too heavy for me to carry. How had I gotten this weak? One of the children would have to haul it down for me. Descending the stairs, I called out to our oldest son, "John, come here, baby." He looked mildly surprised to see me downstairs during the afternoon.

"Where's your brother, John? Dallas called and, and . . . they have a liver for me. Find Michael."

He stood speechless a moment then wistfully whispered, "Oh, mom."

With those two words he flew out the front door yelling, "Michael, come in. Now! Mom's liver is here."

Within seconds both children were inside. Michael fitfully sprang about the kitchen, while my older son leaned against the pantry door looking bewildered. Our neighbor, hearing the excitement, came over to offer moral support. Within minutes, mom and dad arrived with my niece, Erica. Finally, I heard Ernie's car as he pulled into the driveway. Now the house was abuzz with voices. Soon we would leave. Who knew when I would stand in this kitchen again? Who knew if I would stand in this kitchen again? Amongst the animated whirl of conversation, I slowly turned and gazed around the house. This house which had been my prison and my haven for the past several months. Our home. Memorabilia collected over the duration of our marriage caught my eyes. Poems, drawings, and school pictures the children had brought home over the years hung in places of honor throughout the house. Grandma's dining room furniture . . . Oh, the spaghetti dinners and rowdy conversations we had around that table—and the food! Grandma made the best pies. Look how lush our plants looked. They seemed to thrive in the diffused light, which flooded the rooms through the large windows. Souvenirs from family vacations were placed on shelves by favorite novels and college texts. It was a reflection of our lives, this domestic collage of our collective treasures.

"Okay, let's get going," Ernie excitedly urged.

"All right," I agreed. Do not cry, I ordered myself. Dad had his keys ready. He and mom would drop Ernie and me off at the airport while my niece, Erica, stayed with John and Michael. When we reached the front door, I turned one final time and looked carefully into the solemn faces of my children and niece. Our little black, curly-haired dog, Petey Boudreaux, usually so rambunctious, sat quietly, as if he too felt the magnitude of this departure. The surgery could not possibly be as painful as this parting. Keeping a tight rein on my emotions, I embraced John and Michael.

"See you soon. Bye Erica," I said as I hugged my niece. Bye, Petey-boy. Look after the kids.

As we walked to the car, I slowed my pace to admire the flowers and greenery that filled the beds and lined the sidewalk. I vaguely acknowledged the hours of gardening I had lovingly put into the yard. Now it was time to get in the car. Still hungry for details to feed on during my long absence, I couldn't resist watching our house until it was no longer in sight. Who could possibly understand the depth of sadness, this rush of love I felt as we drove away from Twenty-one, Eleven Kilkenny Drive? Despair upon leaving my children and family—that was understandable, but a house? Yet, I had nurtured this house like a child. It seemed alive to me. The muted color scheme, every picture, and every piece of furniture was selected with care. As we left the neighborhood, I compellingly whispered, goodbye yard, goodbye lovely home," then rested my head against the car window for support.

Rain was pelting down when we arrived at the airport. Climbing out of the car, I called out to my folks, "I'll see you soon," as though I was going on a weekend trip. After checking in with the ticket agent, we had to rush to board the next flight for Dallas. My legs tired so quickly that it was difficult for me to keep up with my husband's anxious pace.

Upon reaching our terminal and entering the plane, I wearily sat in the closest available seat. Looking around the plane, I wondered where the other passengers were going and what awaited them when they arrived in Dallas. Suddenly I was tempted to shout out loud, "I'm going to Dallas for a LIVER TRANSPLANT, people! Can anybody match that?" What madness. Instead, I sat quietly clutching my husband's hand, trying to imagine how people would have reacted to my emotional outburst.

Shortly after reaching cruising altitude, the weather grew frighteningly stormy. Lightning flashed all around us and thunder reverberated in our ears. The passengers momentarily fell silent and nervously looked at one another. I couldn't believe this. Here I was facing one of the most complex, dangerous operations a person could go through and we were jetting in the middle of the worst thunder storm I could ever recall flying in.

"Well, I certainly hope this darn thing doesn't go down," I whispered to my husband. "Wouldn't that be the height of irony?"

The "Fasten Your Seat Belt" lights were flashing and we were bouncing from side to side and up and down. The pilot's voice came over the intercom and announced that we had "encountered a little bad weather". He said he had to "skirt" the area in order to get to Dallas.

Skirt all you want, just get me there in one piece, I prayed.

From time to time, I would hesitantly look out the windows hoping to see the ground. Finally, the pilot began his descent. It was so dismal and rainy outside that I could barely see. I'm one of those flyers who anxiously watches the ground as the pilot makes the landing approach. I've actually grown to feel that the landing can only be successful and smooth under my watchful eyes. Now I couldn't see. The pilot was on his own! Just before the landing wheels touched ground, though, I saw the runway and guided the plane down its cement path with my eyes.

"At last! Dallas. We made it."

Cocoon

Solitude is the furnace of transformation.

~Henri Nouwen

With a sigh of relief, we left the Dallas airport and taxied to Baylor Medical Center where I was admitted to the hospital then swiftly transported to 14 Roberts. I recalled from my evaluation tour that this was the floor where Baylor housed all their liver patients. Our escort brought us to a homey patient room. It had been decorated with muted colors and had coordinated drapes that fell in deep vertical folds on each side of the window. The room was large and included a patient area plus a sitting area for visiting family and friends. The sitting area was furnished with a chair and couch, which both unfolded into beds for the patient's "support people". An end table with lamp and a phone were beside the couch. "My area" had a patient bed that was nicely disguised with a color-coordinated bedspread. Directly in front of and above the bed was a television which could be seen from both patient bed and sitting area. Across from the right side of the patient bed was a large vanity and sink. Next to the sink was a bathroom. On the far side of the room was a large window overlooking downtown Dallas. As I looked back at the patient bed with its lowered side railings and iconized electric buttons, I began to get goose bumps. I turned to my husband and said, "Well, I'm going to call Gennifer and Paul and let them know I'm here". Gennifer had taught as a fellow radiology instructor at Houston Community College. I loved Gennifer. She was funny and smart and very organized, which was very appealing to me. She was a dedicated instructor and I respected her integrity as a health care professional. Whenever I needed to discuss an instructor-related problem, Gennifer was my go-to person. We had shared clinical instruction at Houston’s Methodist Hospital, but she and her family had relocated to Dallas several months before I was listed for a transplant. I sure missed her.

Paul was a long-time friend of mine from Galveston Island. I met Paul when I was 14 years old. We were attending a birthday party for a mutual friend. I arrived at the party late due to a Saturday morning orthodontist appointment. The party was held at Galveston’s Boat Club, a popular spot for swimming, sailing, and skiing. Even though I missed out on the swimming and boating, I arrived in time for the party in the club. As I sat waiting for the kids to change from wet bathing suits and congregate in the club, in walks this boy—blond hair, nice smile, cute.

“Hi, I’m Paul Wallace,” he told me.

“Hi, I’m Detna Levin.”

“Seven Eleven!”?

“No! Det-na Levin,” I repeated more slowly.

A smile spread across his face and I smiled back.

“You sure have a sparkly smile,” he said, referring to my braces.

“Thank you?” I didn’t know what to make of him. People began to arrive in the club and I would steal glances at him across the room. I didn’t know it that afternoon, but he was to become my childhood sweetheart, my first love. The affection, which grew from that relationship laid the foundation for a friendship that lasted a lifetime.

No sooner had I finished talking to my Dallas friends when my phone started ringing. Family and friends from home were calling with well wishes. The word was out! I was soon obliged to put down the phone and let my husband take calls when white-coats came rushing in the room with needles, vials and an enema bag. They all began asking me questions and giving me orders. After the medical technician finished drawing my blood (about twenty vials!), a bright and cheery voice from a young woman holding the enema bag sang out, "Hello, I'm Rula, your nurse." Rula, I said to myself, repeating the name, hmmm, how exotic.

She had an olive complexion and shiny black hair pulled into a tight ponytail at the nape of her neck. Her large dark eyes were accentuated on top and bottom with black eyeliner. She was dressed in tight white pants and a brightly colored top. Like a bundle of energy, she zipped around the room chattering, laughing, and giving me instructions. Before leaving, she asked that I take a shower and scrub myself from head to toe with an orange antiseptic soap. After which, I was to dress in a patient gown.

"These are the most immodest gowns," I said to my husband as I left the bathroom.

Carefully, I wrapped the gown around myself as I sat down on the bed.

"You'll probably lose your modesty by the time you leave here," he laughed.

"Ha! I don't think so," I insisted.

Rula returned to start my IV. She called it a "hep-lock". Instead of being hooked up to a bag hanging off a pole, this IV had a short tube that terminated with a small round, rubber cap. Rula taped the tubing flat against my arm, then stuck a small needle into the still exposed rubber cap and injected a clear liquid called saline to flush all the blood from the tubing back into my vein. Lastly, she injected another clear liquid called heparin. The heparin would keep my blood from clotting in the tubing. Now I could have medicines given through the vein as needed and not have a continuous IV drip to keep the vein open. That is why this type of IV is called a hep-lock. Heparin is actually locked into the tubing when it isn't in use.

During the course of the evening an anesthesiologist and other medical professionals dropped by to answer questions I might have about the surgery. I was told that tests were still being run on the donor liver and surgery would begin early the following morning. It was already late at night and I was exhausted. With lights dimmed and the television playing quietly, I walked over to the window and looked out at the Dallas city lights. This was it. Soon I would be surgically opened, my organs exposed, my liver removed. My life would literally be in the hands of the doctors.

My nurse said that Dr. Klintmalm, the director of transplantation on the Dallas team, would be doing my surgery. I only knew him from the Twice Blessed film I saw during evaluation. I tried to picture him, but instead visualized Dr. Wood from the Houston team. Well, the decision had been made. There was no turning back. As I stared into the darkness, I thought about my donor. Her family must be heartbroken. She was hardly more than a girl with her whole life ahead of her. The tragic irony of this transplant procedure was finally upon me and I had no tears. The depth of sorrow and gratitude I felt towards my donor and her family was so intense as to temporarily drain me of all outward emotion.

Rula entered my room and encouraged me to go to bed.

"I need to start your first dose of cyclosporine. I'll have to drip it through your hep-lock. Do you need anything to help you sleep?" she kindly asked.

"Oh, no, I never take any medicines—not even aspirins. I've always been kind of scared of pills and medicines." Then I laughed, "Bet I get over that notion by the time I leave here."

She smiled and helped me into bed. After hooking me up to an IV bag she told us, "Your husband can share your bed if you like." She closed the door and Ernie slowly walked across the room and sat on my bed. His physical presence provoked a sense of growing detachment. Tonight I needed distance; a space, an interlude in which to feed on my own thoughts and draw inner strength. I couldn't allow myself to feel close to anybody right now.

"I think I'd be more comfortable by myself," I admitted, hoping he would understand.

Like a caterpillar waiting to be transformed, I had begun weaving a silken cocoon to protect and isolate myself until I could emerge with a newfound strength and glory.

There Is No Bile

Thursday's child has far to go . . .

~Anonymous

Early the next morning, an orderly appeared with a stretcher. My knees began to shake under the sheets. Stop that! I tried telling myself.

"Rula, I'm scared," I confessed when she arrived. She paused and looked at me sympathetically.

"It's all right to be scared. I know how you feel though. Did I tell you that I'm a transplant patient?"

"No," I shook my head with disbelief. "You?"

"Yes," she declared. "I had a bone marrow transplant. So you see, Rula understands how you feel. The doctors have ordered a little something to relax you."

After helping me scoot onto the stretcher, she injected some medicine into the little cap of my hep-lock and adjusted the drip of my IV. Within seconds my fears subsided and the shaking stopped.

"Gee, that's pretty good stuff. I think I'm ready, you guys."

I was starting to feel brave. The orderly raised the stainless steel side railing on my stretcher and proceeded to wheel me out of the room. My husband held my hand as he walked next to the stretcher. When we got close to the operating suite, the orderly stopped and sent my husband back to our waiting room on 14 Roberts. Soon my brothers would join him for the duration of my surgery.

As we started to move, I raised my voice and told my husband, "I feel very serene . . ."

Out of a dense fog, I struggled to open my eyes and saw the faces of my husband and older brother floating above me. Ernie was standing to my right, and my older brother, David, was to my left.

"Your transplant's over. Everything went fine," Ernie assured me.

The ventilator, which assisted my breathing kept me from responding. I remembered the words of my Houston support group friend, Melanie, "Don't fight the ventilator; go with it." I let myself relax. It was remarkably easy. Then it occurred to me that while my husband, a biomedical engineer who had worked in hospitals most his adult life, was used to tubes and life saving equipment, my brother was not. Poor Dave, this must be upsetting for him to see his sassy, younger sister connected to so many monitors. Very slowly, I found the muscles to move my left hand and place it over that of my brother's. I gave a little squeeze to let him know that everything was all right with me. My mind began to wander . . . my older brother. What a brute he used to be when we were little! I was his bratty little sister, a title I was happy to live up to. Yeah, I sure knew how to plague my brother. The childish triumph I relished from bedeviling him still made me smile. Why did we torture each other that way I pondered in my vulnerable, semi-lucid state? I remembered the time we were racing the length of the driveway on our skates. He was faster than I thought and quickly moved ahead. I grew livid with sibling rivalry. Suddenly fate intervened when he skated unexpectedly over a twig and fell spread-eagle on the final stretch. My competitive spirit soared, and as I raced by his outstretched, winded body. I laughed like a hyena and yelled out triumphantly, "I win! I win!" How heartless, I now thought in my sedated state. I felt compelled to apologize for this insensitive childhood act and tried to move my mouth, but the words wouldn't phonate. Oh, yeah, the ventilator, I remembered.

Time lost all meaning. At some point, I was taken off the ventilator. Now I could talk. My husband and brothers would come and go. Nurses and doctors would come and go. I began to notice the concern in the physicians’ hushed voices. My nurse would frequently lift my sheet and examine a clear drainage bag, which rested atop my abdomen. It was empty. Empty? Then I knew. The liver wasn't working. That was the bag into which bile from the liver should be flowing if it were functioning properly. Something was dreadfully wrong. My fear initiated momentary alertness. I looked frantically around my bed and recognized Dr. Husburg, who had interviewed me when I went through evaluation.

"Dr. Husburg," I weakly called, "what's wrong...what's happening?"

"Mrs. Kacher," he sighed, "this liver isn’t functioning."

Oh, no! I thought. Is this one of those ICU hallucinatory events I’d heard about? But I knew in my heart it wasn’t. The liver was non-functional. In my mind's eye, I could picture the hopeful faces of my children when I left for Dallas.

"Can you find me another one?" I pleaded.

"We have you listed as a number 1 across the nation. That is top priority," he promised me.

When my husband returned for a visit, I was able to rally enough to tell him that my liver wasn't working.

"Ernie, I need another liver. I need another liver," I repeated with conviction. "And, honey, you better call my mom and dad. Ask them to come. Please—this might not work out for me."

Throughout the day, my husband and brothers would come to my bedside with words of encouragement.

"Tell the doctors, I need another liver," I kept reminding them.

"Detna, think positively," my younger brother encouraged me. "Maybe this liver will start to work again."

But I threw off the sheets and showed him my bile bag.

"No," I sadly whispered, "there is no bile".

Later, upon waking, a familiar form crossed the room.

"Mom?" I cried out. "Thank God—now I won't die,” I muttered with relief. But what is she doing here? She's not supposed to be here for another week. Has it been a week since my transplant already? I had lost track of time and forgotten that I'd asked for her. Who's taking care of the children, I wondered?

"This liver isn't working, mom, did they tell you?"

During the next couple of days I would drift in and out like the tide on a beach. Sometimes I felt like a helium balloon, weightless and carefree, with no direction. Occasionally I'd recognize Ernie or mom. They would take turns rubbing cool cloths over my legs. I was hot, so very hot. Fragments of conversations would awaken me from time to time.

". . . have to restart an arterial line," a doctor was telling Ernie. ". . . another liver being flown in from Michigan . . .getting her ready for surgery right now."

He began sticking a needle in the inside of my wrist. Why doesn't it hurt? But nothing they were doing seemed to hurt. It was as though I was outside my body and unfeeling of pain and other sensations. The date was July 31st, 1992. I had been without a functional liver for two and a half days.

Over the Rainbow

Lions, and tigers, and bears! Oh My!

~ The Wizard of Oz

My doctors waited two days for an "O" liver. That is my tissue type. When no match became available, they decided to cross-match me with a type "A" organ. It was coming by jet all the way from Michigan. Cross matching of organs is done only in emergencies. Frequently, severe rejection of the organ will ensue. There was no other choice. I was lucky to get this liver but too sick by that time to realize I was on my way to surgery once again.

When I awoke after the second transplant, my awareness of sensations had returned. I felt something pinching one of my fingers. With great difficulty I opened my eyes to have a look. There, clamped on my right middle finger, was a small device that was making the tip of my finger glow an intense red.

What the hell? Where am I? Think, Detna, I commanded myself. Don't panic. Oh yeah, I was on my way to have a liver transplant—but what happened? I looked down at my glowing fingertip with grave suspicion. A red glowing finger? Where have I seen that before? Egads! Then it came to me. I must have been abducted by extraterrestrials on the way to my transplant. Now they were trying to "alienize" me! With my right thumb, I was able to reach the underside of the alien clamp and quickly flick it off. Once I freed my finger, I tried to leap from the bed and make a run for it but found I could barely budge. They've got me tied down! I couldn't believe it. I raised my arms for observation, and sure enough, white restraining gauntlets were wrapped around both wrists and tied to the bed railings. I could hear a buzzer sounding. I must be hooked to alarms, I realized with dismay. Shortly, a female dressed in colorful clothes came to my bedside. Yep, she looked foreign all right, with large dark slanted eyes, brownish skin, long black hair tied in a loose ponytail, and a red dot on her forehead. The red dot seemed to grow then shrink. She calmly reached down, secured the glowing clamp on my finger and left. Once again I flicked it off and the buzzers sounded. Every time she would clip the clamp on my finger, I'd pop it off. Finally, she stood by my side like a guard dog. I tried to ask her where I was, but she didn't seem to hear me.

Maybe she doesn't speak human.

Eventually she responded in a high intonation and heavy accent, "I'm your nurse." She sternly insisted that I keep the finger apparatus on. When I tried to ask her once again where I was, she chanted in her high-pitched voice, "Stop trying to talk. We have a little breathing tube down your throat—you can't talk with it in." I pondered on that for a moment.

Oh, she's good, I thought to myself. But if she were a real nurse, she would have referred to the "little breathing tube" as a ventilator! And what about her clothes? She wasn't wearing a white uniform.

A male in a lab coat soon joined her. The alien "nurse" called him Earl. He began mixing a concoction right by my bedside. Uh-Oh. What's going on here?

Intently, I listened, trying to figure out what they were planning to do. I overheard bits of conversation about "cytoxin".

Toxin! They're going to poison me.

I tried to fight them, but they hung their poison from a hook above my bed and plugged it into a tube in my neck. It was horrifying. Exhausted and helpless, I realized that I could not fight the restraints at that time.

Throughout the night a variety of humanoids dressed like medical personnel would stop at my bed and take samples from my tubes. This reaffirmed my previous suspicions. I had definitely been "beamed up" and was being used as a human guinea pig.

How could Baylor Medical Center let this happen? I should have stayed with Dr. Wood in Houston. Who could have guessed that security at Baylor was so poor? I'll have to play along until they're done with me. When the toxin wears off, I can try and read signs and figure out where I am and how to get loose. For now, I'll have to stay calm and keep my wits about me.

Later, a different "nurse" was sent to keep watch over me. This one had blond hair and blue eyes and didn't look foreign. She was far more talkative and gentler than that creature from last night. Soon another female joined her.

"We're going to roll you on your side, Mrs. Kacher."

They know my name!

Once on my side, a long strip of material was snugly tucked behind me. They had me roll back on the material. I felt hot all over.

"We're need to weigh you," I was informed.

I nodded my head in agreement.

Of course, I knew better, but thought it best to go along with them. The material felt slightly gritty and I figured out that they were using my body like a rolling pin to mold sand candles in the hot desert. None of this made any sense! But I knew I was being exploited. Nice as they were, I felt it was very unethical to use me in this fashion.

Whenever I awakened, I discreetly studied the area I was confined to. Staring up at the ceiling, I noticed that it seemed to slowly pulse as though breathing. Quickly, I squeezed my eyes closed.

How unsettling.

I appeared to be caught in surrealistic surroundings where inanimate objects were distorted and had a life of their own. What a strange place. The blond-haired woman seemed to realize that I was frightened and spoke kindly to me.

Maybe she wouldn't mind if I took this clip off my finger. I'd test her.

Very smoothly, I eased the device from my hand.

"Here, let's change fingers," she said as she retrieved the clip.

No! I vehemently shook my head from side to side.

"Mrs. Kacher, this is just a pulse oximeter. It measures the oxygen in your blood. You've had a liver transplant. It's important that you leave this on."

Her explanation was baffling yet strangely plausible. I wanted to believe her.

"Why does the ceiling breath?" I tried to ask, but my voice didn't sound.

Patting my shoulder she said, "You can't talk right now. You're still on the ventilator."

. . . What? She said "ventilator". Could she be a nurse after all?

My mind started to race. I know I went for a transplant. But where's Ernie and the rest of my family? Have I been hallucinating? Maybe the red finger light tricked me. It all seemed so real, so terrifying. But if I had really had a transplant my family would surely be with me. My eyes wanted to close but I kept opening them every few minutes to make sure my nurse was still by me. I liked her. Out of the corner of my eye, I saw a couple of people walking over to my bed. It was mama and Ernie! I wanted to cry with relief.

It must be true. I have had a transplant and am in the hospital. Where have they been, I wondered?

"Oh, she looks so much better," mama remarked to Ernie and the nurse.

I wanted to ask them where they had been. If I could only tell them how scared I'd been and that I'd had a long, terrible nightmare. But it wasn't a nightmare; no, I had definitely been awake. I had traveled in my mind to a distant and strange place—like Dorothy in The Wizard of Oz.

"She looks so much better," mom repeated.

"Auntie Em, Auntie Em!" I was wanted to shout.

It was just as well that I was still hooked to the ventilator and couldn't speak. I knew I'd been over the rainbow, but I don't think they would have understood. Closing my eyes, I was able to rest peacefully at last.

Where's the Cola?

Sweet is pleasure after pain.

~John Dryden

"The doctors are going to take her off the ventilator this morning," my nurse informed Ernie and mom.

Soon, a respiratory therapist came in. She explained that they would gradually reduce the ventilator activity and permit me to take over some of the breathing. After they ascertained that I was breathing completely on my own, the tube from my windpipe would be removed. When the therapist first reduced ventilator activity, my breathing felt unnatural and labored. The nurse turned on a television, which hung above my bed to distract me during the process. I tried concentrating on the television program and not my breathing. The scheduled T.V. segment had a nice little feature on making fruit sorbet. Yummy, the icy dessert looked so cool and smooth and my mouth felt so hot and dry.

Eventually breathing came easier. Nonetheless, "getting off the ventilator" seemed to take an extraordinarily long time. When they were finally able to remove the tube, I felt as if a washboard was being pulled from my windpipe. What a relief to be rid of it. My nurse asked me how I felt.

"Fine," I croaked.

"Mrs. Kacher, do you know where you are?"

"Baylor?" I hesitantly answered, all the while thinking that "Emerald City" seemed more appropriate.

"That's right!" she said. "Do you remember why you're here?"

"I had a liver transplant, right?"

"Yes you did, you had two!" she exclaimed.

"Oh."

"Here come the doctors," my nurse informed me.

Soon I was surrounded by a group of people. A man reached down, took my hand and asked, "How are you, Mrs. Kacher?"

I knew him! It was Dr. Klintmalm, from the Twice Blessed film, my surgeon.

"I'm thirsty," I blurted out. "Can I have a Coca-Cola?"

"Ha! I'll tell you what; you have some ice chips this afternoon, and if you don't have any problems, you can have liquids for dinner," he promised.

"It's a deal," I agreed.

All afternoon I asked my nurse and family for ice chips. The ice felt exquisite as it melted on my tongue. Later that afternoon when the doctors returned on their rounds, I happily anticipated an ice-cold coke. After checking my chart and conferring with the nurse, however, they all started to leave.

Hey, nobody ordered a coke for me!

"Dr. Klintmalm!" I yelled.

He seemed surprised when he turned around and asked, "What is it, Mrs. Kacher?"

"I thought we had a deal?"

"A deal?" He seemed thoroughly perplexed, so I added, "That's right. You said if I ate ice chips I could have coke."

"Coke?" he questioned.

"Yes. You know, Coca-Cola," I explained.

"Oh . . . " recollection spread across his face. "That's right."

"Well, I ate my ice chips."

Turning to the team he inquired, "Has she had any bowel sounds?"

He must mean gas, I thought. How would they know?

While they were discussing it, I motioned for the doctor on my left to bend down. "Listen," I tried to whisper, "could you tell him you heard me fart?"

Suddenly, all the team started to snicker.

Ooops. Was I too loud?

"Oh—is that correct, Mrs. Kacher?" Dr. Klintmalm asked.

"Yes, I think so."

Turning to the nurse he said, "Order Mrs. Kacher a liquid dinner".

When my husband came back to intensive care to visit with me, I told him they were bringing me a Coca-Cola.

"Great," he replied, "but what did you say to the team? They were all laughing when they came out and said you were in top form this afternoon."

"I don't know."

A short time later, my nurse brought in a tray with several covered cups.

"Where's the cola?" I implored as my nurse uncovered first broth, then Jell-O, and then juice.

"Mrs. Kacher, this is a clear, liquid dinner," the nurse replied, "there is no coca-cola".

"What? No coke, a"

"Here, let's have a little sip of apple juice," she urged.

"Oh, all right. But y’all tell Dr. Klintmalm, tomorrow I want coke!"

After having my say, I proceeded to slurp down every drop of liquid dinner.

Hallucinations and mind travel sure can make a person hungry, I realized.

Falling back on my pillow I could feel "dinner" sloshing from side to side. It was great to be alive.

14 Roberts

We sail within a vast sphere, ever drifting in uncertainty, driven from end to end.

~Pascal

The morning after coming off the ventilator, I awakened to a voice saying, "I'm Dr. Distant. I have to remove your drainage tubes. It's going to hurt a little."

"`Distant', as in ‘far and away’?" I asked.

"That's right," he smiled.

"I've been far and away myself," I confided.

"Yes, I've heard," he responded with a smile.

As he proceeded to examine my abdomen, I decided he must be a kind person. Besides being very gentle, there was something about his eyes; compassionate, understanding, confident. They looked like two dark spots of velvet—so safe. Looking downward, I saw four tubes coming out of my abdomen just below my incision. Three of the tubes had fist size balls attached to them; the fourth was connected to my bile bag, which did have bile in it this time. He would be removing the three drainage tubes with balls. Each time he removed a tube, he would grasp the tubing with one hand giving it a firm tug and twist. A sharp, abbreviated pain erupted every time he initiated the tube removal, but he seemed to have his technique perfected and the procedure was soon over.

Later that afternoon, I was transferred to the 14th floor in the Roberts' tower. Leaving ICU is a milestone for transplant patients and I was dizzy with excitement. I'd been promoted! When I arrived on the floor, a nurse began taking my vital signs (blood pressure, heart rate, temperature, etc.).

"So, you're our ‘cross-match’?" she said.

Cross-match? Is that what happened?

"Yes," my husband replied for me. "Her donor liver is type 'A', but she's a type 'O' tissue".

The nurse went on to say that over the next 14 days I would be receiving the drug OKT3. I remembered hearing about OKT3 during my Dallas evaluation. It was a very toxic drug used for acute rejection. Was I having a rejection? It must be a result of the "A" liver, I realized. OKT3 provided an extremely powerful suppression of the immune system. Side effects ranging from fever and headaches to respiratory arrest could occur while taking OKT3, yet, due to its ability to stop acute rejections; the doctors and nurses referred it to as their "magic bullet". Another hurdle to cross.

For the remainder of the afternoon, my nurse would pop in, take my vital signs, and administer various medicines through an IV. I noticed that I no longer had a hep-lock in my arm. Now, I had a catheter-like tube going into a vein in my neck, and another inserted into a vein just below my left collarbone. They looked like big hep-locks, but my nurse called them "mainlines". The mainline from my neck divided into two tubes, while the one from my collarbone divided into three. Hanging close to the end of each tube were colorful plastic clips. Each tube terminated with a rubber cap held in place by a colored plastic ring. Little did I realize that many times over the next several weeks, all five caps would be attached to IV tubing for simultaneous infusion of medicines and blood. Sometimes, especially at night, I felt as though a network of tubing blanketed me. Upon awakening, I would move very carefully, afraid of getting tangled in my plastic web. Looking around the small confining room with its unfamiliar nightly shadows I was frequently overcome by a sense of fantasy. What was I doing in this mechanical bed? This couldn't possibly be happening to me. Why the walls in the room where I slept had framed cross-stitching and photographs of my babies, not oxygen canisters and extension poles for IVs. My vanity should be adorned with perfume vials and scented creams, not a myriad of medicines and antiseptic solutions. The entire dream-like scene reeked of absurdity.

The morning following my transfer to 14 Roberts, a herd of noisy doctors and nurses barged into my room, barely acknowledged me, and headed for a big poster on the wall across from my bed. This was my patient wall-chart, which listed of all my lab values and vital signs. White coats swarmed around it, each clamoring to have a look. Voices escalated as first one doctor, and then another debated what to do about my lab values (which the doctors referred to as my "numbers"). It seems my numbers were elevated and far from normal. Contributing voices settled on a collective strategy.

"Let's change this medicine," and "We need to start her on potassium; Send her to radiology for an ultrasound and a cholangiogram". Every time a decision was reached regarding my medicines or a diagnostic procedure, one of the fellow doctors would record it on my wall chart. Dr. Klintmalm stood by watching, saying very little. When they finished, he inquired as to how I was feeling and said that everything was fine. With that, they all poured out of the room and continued down the hall. My head was spinning from their "visit". I looked over at my husband.

"What just happened? They stampede in my room—not even a ‘hello’, argue about my 'numbers', then tell me everything is 'fine'!"

Late that evening my nurse and an aide returned to my room with a scale. It was a standard hospital scale with the sliding weights, but coming off the vertical support at waist level, was a large handlebar. The nurse carefully helped me sit up on the side of the bed while the aide moved the scale close to my feet. It would be my first time to stand since the surgery. I stepped onto the base of the scale and grabbed hold of the handlebar. It was difficult to hold myself up and the aide had her hand under one of my arms offering additional support. Directly across from me was a big wall mirror and I stared curiously at my image. The plastic clips on my mainlines were clanking cheerfully as I tried to steady myself. They almost looked like exotic jewelry.

"Okay, hold on Mrs. Kacher while we weigh you."

The loud clattering of a motor seemed to come out of nowhere and almost startled me off the scale.

"That's CareFlite," the nurse explained. "Their landing pad extends under your room."

My back was facing the window, but sure enough, in the reflection of my mirror I could see the CareFlite helicopter, orange and bold, right outside my window. Then it occurred to me that my patient gown wasn’t properly tied and wasn’t covering my backside! As if by reflex, I let go of the handlebar and tried to pull my gown shut in the back. Frantically, the nurse and aide grabbed my arms, urging me to take the handle bar again.

"But I'm exposed," I tried to reason.

"Come on Mrs. Kacher, we'll hold your gown," they coaxed.

Suddenly, the situation turned hilarious and it occurred to me that "mooning" CareFlite would be a fine thing. Taking hold of the handle bar once again, I laughingly told my nurses, "I'm going to moon them!" and proceeded to shake my tush. Weak and unsteady as I was, I wagged my rear to the roar of the motor and the nurses' protests. My husband jumped up and called out my name with disbelief. I thought I would faint from excitement.

The sounds of the motor subsided and I stood very still while they finished weighing me. After the nurses left, my husband exclaimed, "What's gotten into you?" then burst out laughing. I was elated and thought it was the funniest thing I'd ever done.

Every time I woke that night and remembered the CareFlite incident, I'd chuckle and go back to sleep. This transplant must have unleashed me. Normally, I was a very modest type.

The following morning when the nurses changed shifts, my day nurse said upon arriving, "I heard we displayed some inappropriate behavior last night." In the light of day, the incident didn't seem nearly so funny and I was momentarily overcome by embarrassment. I looked at her with big eyes and tried to feign innocence.

"The steroids made me do it."

For a brief while, I was mildly subdued, but as the morning progressed, my sense of euphoria over finding myself still alive, surged. It was short lived. Late that morning, I received a dose of OKT3.

Hurdles

Fall seven times, stand up eight.

~Japanese Proverb

For the next week, I suffered with overwhelming headaches and nausea. My bones so ached, that I could not get comfortable in bed. The OKT3 made me sensitive to smells which resulted in the removal of all flowers from my room. Food tasted terrible, and yet, the medical staff insisted that I eat. By this time, Ernie had returned to Houston and mom and dad were staying with me in Dallas. Under mama's eagle eyes, I mechanically swallowed small spoonfuls of food. Eating was a matter of great concern to my mother. Other patients had told us that eating right after transplantation is difficult since the medicines often distort taste. This was unfortunate since a nutritionally sound diet is vital for the healing process. Before the transplant, both mom and grandma made me promise that I would eat after surgery. They were afraid I'd waste away if I didn't start putting on a little weight soon.

"It's very important that you eat to keep up your strength," Grandma's shaky old voice kept reminding me.

"That's right," mom would echo, "You’ll need your strength to recover. You’re already malnourished. Promise me you will eat."

My reassurances never seemed to satisfy them. One time, I finally said, "I promise, I promise. Really. I'll eat dirt if the doctors ask me to." Dirt—Ha! That seemed to placate them. Now the time had come to keep my promise and eating proved more difficult than I previously anticipated. My constant inspiration was not the promise I'd made to my mother and grandma; it was the dread of being force fed through a nasogastric tube. These feeding tubes go into the nose, down the throat to the stomach. When it's time to eat, the nurse simply connects a bag to the nose end of the tube and slowly fills you with a liquid meal. Better I should try and eat.

Like a child at summer camp, my days were packed with activities: liver biopsies; imaging exams; endless rounds of IV medicines and blood transfusions; workouts with a physical therapist, an occupational therapist, and a respiratory therapist. All of this hoop-la, and they still expected me to eat three times a day. The transplant team's countless demands on my body were wearing me out. At times, I could not understand why they didn't leave me alone and was tempted to tell them all, "I feel crummy, you guys! Can’t you back off?" What I wanted, what I thought I needed was to climb in a hole like an injured dog and lick my wounds.

My most dreaded daily task was going to the pheresis lab. In this laboratory I was hooked up to a huge machine by way of my main line, which would recycle all of the blood in my body and filter out the A antigens. This was supposed to help control my violent rejection. The procedure was not only long (three hours), but also often very painful, resulting in waves of cramping deep in my bowels. Often when I returned to my room on 14 Roberts, the physical therapist would be waiting. Feeling exhausted and nauseated from my pheresis treatment, I would beg the therapist to leave. Enough was enough! But the physical therapist didn’t cave to begging or insults.

"Three walking laps around the floor today," she’d tell me. I’d give her the stink eye, but she didn’t seem to notice.

On days when the therapist arrived before I went to pheresis lab, I had the energy (and temperament) to deal with rehabilitation exercises. After having me alternately lift my legs and extend my arms from the bed, it was time to practice walking again. The therapist would fasten a wide, guitar-like strap around my upper chest. Coming off this strap was a single rein which the therapist would pull tautly as she guided me down the hall. This strap was supposed to break my fall in the event I fainted or stumbled. How I hated those "walks". I felt like a dog on a leash. The one thing that made this exhausting, humiliating endeavor worthwhile was the cheers from the staff as I passed the nurse's station.

"Lookin' good Mrs. Kacher!" or "Keep it up, you'll be in Twice Blessed apartments soon."

In addition to all of the physical demands, I was experiencing steroid flashes which traveled down my body like a heat wave. I heard some of the older female patients compare them to menopausal "hot flashes". Throughout my adult life I'd heard mature women complain about their hot flashes and night sweats, but never comprehended the intense heat that sweeps the body until I took steroids.

"Whew! Could you call maintenance and have them cool the room off?" I'd ask mom.

The poor maintenance men! They must have spent immeasurable amounts of time adjusting the room temperatures on 14 Roberts to suit all us transplant patients every time our internal "thermostats" fluctuated.

One day as I lay in a sweat, a youngish man with faded blue jeans and a flowered shirt showed up at my room. His hair was shoulder length and cut in layers so that it fell like a mane around his face. Maintenance, thank goodness. My, but he's unconventional. He’s not even wearing a uniform. Where did personnel find him? Marching over to the wall, he bypassed the thermostat, went straight to my wall chart and began reading it!

"Excuse me! Who are you?" I demanded with surprise.

Slowly turning around, he gazed at me with deep blue eyes and stated, "I'm Dr. Goldstein," then resumed reading my chart.

I looked over in astonishment at my mother who was sitting across the room. Her brow was furrowed in confusion.

"He's a doctor?" she asked after his departure.

"That's right, mom. You heard him—Dr. Goldstein. The 'cute one'; that's what Ruth said."

"He's a hippy!" mom declared.

"Yeah, I know . . . looks like he fixated in the seventies. The female patients rave about him though. The nurses love him," I added. "I suppose he has a certain free spirit kind of appeal, if you like that type. Great eyes though."

"Yes," mom nodded. "Nice rump," she added.

"Ma!" I disbelievingly called out, "you shock me!"

"I still notice a good looking man. Besides, I’m bored."

"Maybe I should call him back and tell him you’re having heart palpitations," I teased.

Two weeks had passed and I finally finished my OKT3. Although my numbers didn't significantly improve, the headaches and nausea did go away. Not certain if the OKT3 had stopped my rejection, the doctors decided to do another liver biopsy.

Another biopsy! I'm not going to have any liver left if they keep this up. I quickly looked for Dr. Distant in the crowd of fellow doctors.

"Will you do the biopsy?"

It was more of an appeal than a question. I was used to Dr. Distant. He was easy with his needles and always administered the deadening medication slowly so as not to cause that burning-feeling produced by xylocaine. Some doctors act as though a biopsy is a race against time and inject the xylocaine so quickly that I expected my side to explode and spew fire. Not Dr. Distant, he was considerate. Nice man—he knew I was partial to him and never turned me down when I needed a procedure, even when he was scheduled to be elsewhere. The team had at least four fellow doctors who were more than capable, but they all knew I preferred Dr. Distant.

That afternoon when the team made their rounds, Dr. Klintmalm came straight to my bed. Taking my hands he said, "Mrs. Kacher, the rejection has stopped. This is glorious." His words registered, but I couldn't summon any emotion. I felt blank. It had been a rough two weeks. With a compassionate look, he said, "Go ahead and cry. You need to cry." As though on cue, big tears silently rolled down my cheeks. His words tapped the suppressed emotions and soon relief and happiness swelled within me.

Before the week was out, however, my numbers began to climb. In the event I was rejecting again, Dr. Klintmalm suggested that I take an experimental drug called FK506. This drug was being tested at several transplant centers across the nation as an alternative immunosuppressant for cyclosporin. It appeared to be more effective in holding chronic rejections at bay. I knew of FK506. A small dose was extremely potent. In the early days of experimentation, before the therapeutic dose had been defined, FK506 had proven to be very toxic to the nervous system. This was the drug Ruth was on when she had her seizures. Since then, the dose had been refined. Still, after what happened to Ruth, I was apprehensive. It was FK506 or another transplant though. I signed the consent form for the experimental drug.

The next morning following my biopsy, Dr. Klintmalm stopped by to introduce the youngest surgeon on their team, Dr. Levy. How different the two doctors were! Dr. Klintmalm was blond and slim with blue eyes that seemed to house a perpetual thoughtful expression. His overall demeanor was polite, dignified, and warm. I often thought that he was the most elegant man I had ever met. Dr. Levy was more robust. He had dark brown hair and warm dark eyes that seemed to smile and joke. He looked gregarious and jaunty, yet I sensed that he was a man who could be headstrong and assertive when the occasion arose.

"I have to leave for Paris today for a very important meeting," Dr. Klintmalm told me. "Dr. Levy will take care of you while I'm gone."

No! His announcement was unwelcome. The delusion that I had traveled over the rainbow still gripped me. Now I felt abandoned in the Emerald City; the great and powerful Oz was leaving.

Later that day, Dr. Levy returned. The biopsy confirmed rejection. So be it. Bring on the FK506. A research nurse was sent to my room to answer any questions I might have about the FK. By the time he left I felt fairly comfortable about the switch in medication.

"By the way," I asked before he stepped out of my room, "this FK506, where does it come from? What’s its origin?"

"Oh, it's derived from a soil fungus that grows in Japan," he informed me.

A soil fungus!

"Really!”

Turning to mom, I looked at her with astonishment and laughed.

"Well, mama, I'm finally going to keep my promise to you and grandma; I'm going to eat dirt."

Who's That Yelling?

Against stupidity the very gods

Themselves contend in vain.

~Fredrich von Schiller

Research protocol stipulated additional, specific exams for all patients going on FK506. Because of my postoperative complications, I had already been subjected to all the required exams except a nuclear medicine scan. These scans were normally scheduled through the x-ray department during the day. Since it was a Saturday when the doctors decided to put me on FK506, a nuclear medicine technologist from the weekend shift had to be called in.

That evening while waiting to be brought to x-ray, I began to feel my rejection: a low-grade fever with aches and shakes. Looking over at the clock, I realized that it was already early evening. I asked my husband, who had returned to Dallas that morning, when he thought they were going to take me for the scan. Just then Allison, my nurse, came by the room to tell us that she had called radiology to see why the scan was delayed. Their page operators said they could not find a technologist to do my exam and wanted to schedule me for the following Monday.

"What?" I uttered with disbelief. "I'm having a rejection and need to start FK506 as soon as possible. That won't happen for me until the results of that scan are in. You tell those people in radiology they better find somebody to take my scan TONIGHT! I know somebody from that department is on call; they just don't want to be troubled. And call Dr. Levy. He needs to kick butt around here."

I'd been talking like a wild woman since this transplant. Was that my voice? Were those my words? Did I just say, "kick butt"? I glanced over at my husband and he nodded at me understandingly. The personalities these poor nurses had to put up with. Never in my life had I met such sympathetic, compassionate people as the nurses on 14 Roberts. They were not only proficient, but also endlessly patient and kind. Allison was one of my favorites. She was originally from Scotland and had a lovely lilting accent. Sometimes when she took care of me she would tell me about Scotland or her boyfriend here in the states. She referred to him as her "wee man". That really tickled me. I was sorry I had thrown a little temper tantrum in front of her. I seemed to be on an emotional roller coaster these days. Allison soon returned to report that radiology suddenly located a tech who was on her way to the hospital. My nurse's eyes were twinkling with amusement and triumph as she left my room.

"She probably told x-ray personnel that the patient is going crazy and threatening to report them all!" I told my husband.

Around 9:00 p.m., I was transported by stretcher to the imaging department. Ernie accompanied me. When we reached the nuclear medicine room, a young woman with medium length straight blond hair had me move onto another stretcher, then rolled it under a big round scanning device. She told me she had to inject a radioactive medicine into my vein and scan it as it went through my liver. The exam could take an hour or more. I was to remain perfectly still for the duration of the exam or the results would not be accurate and it would have to be repeated at a later time. The thought of lying still for the next hour was alarming as I was beginning to turn from side to side with pain and fever. Instead of injecting through one of my mainlines, she placed a tourniquet on my arm and attempted to inject into a vein. I noted that there was no return of blood after insertion of the needle, but she injected anyway. My skin burned and swelled up around the injection site.

"You weren't in the vein," I told her.

"Well, let's see if it shows up in your bile ducts."

"It won’t—you weren’t in a vein," I reiterated.

"Well, let’s see."

She adjusted my stretcher under her scanner one more time and told me to lie perfectly still. Turning to a machine, which sat beside the scanner, she began to push buttons and twist dials.

"Since your husband's here, I'm going to step out for a while", she announced. "I'll check on you in a few minutes. Remember, don't move, or the exam won't be any good."

After she left I said to Ernie, "The exam can't possibly be good, the isotope injection wasn't any good. Look at this." Around the puncture point my skin was still slightly puffy.

My husband didn't know what to think. Fifteen minutes passed, then 20 and my body got increasingly hot and achy.

"Ernie, where is she? My back aches terribly; I've got to move soon." The severity of pain surprised and worried me. Ernie stepped out of the room and went down the hall. The technician wasn't to be found. Even though I knew the injection wasn't good, I continued to hold still, hoping the bile ducts would visualize regardless. Soon after my husband returned, the tech came sashaying into the procedure room, reset buttons on the control panel and turned to leave once again. All the while I tried to tell her that my back hurt and I needed to bend my legs or something.

"Listen, my wife's in a lot of pain. Can she at least move her legs?"

"Oh, okay. Let me put some sheets under her knees. How's that! I'll be right back."

Another 30 minutes passed.

"Honey, you need to get that tech. I feel really bad—so achy and sick to my stomach."

Once again he left but could not find the tech.

"Listen," he said upon returning. "She seems to have disappeared from the department. I'm going to get your nurse."

"Yes, get Allison. She'll know what to do."

Time seemed to drag. I felt myself getting sicker by the minute. What's that? I could hear a woman from a nearby room moaning and yelling, "I'm so hot. Someone help me. I'm hot, I'm hot." Over and over, pleas for help rang through the department. It was driving me crazy. I wanted to get up and help her. Suddenly, Ernie came rushing into my room.

"Detna! You're delirious. I could hear you down the hall. Everything's all right. Allison is on her way."

"What?" Realization crept through the fog of pain. "Oh no, that was me? I was the one yelling? I must be crazy. What's wrong with me?" Shortly, Allison arrived.

"She's burning up," I heard Ernie say.

"Has the technologist come back yet?" Allison inquired.

"No, we haven’t seen her for some time," Ernie informed her.

From her pocket Allison took out some pain medication, then went to call Dr. Levy. Meanwhile, the technologist returned. Studying the monitor with a pouty expression she announced, "The bile ducts didn't visualize. No use scanning any longer. But I do have some good news. My boyfriend got us tickets for the football game this week!"

We had been there over three hours. My body was stiff from trying to hold still for so long. Was this technician stupid or simply indifferent? And I thought the ultrasound tech at Hermann lacked proficiency! Baylor was a wonderful hospital, but I came to realize that night that every hospital, great as it might be, has its idiots.

Twice Blessed at Last

Look to your health; and if you have it, praise God, and value it next to a good conscience; for health is the second blessing that we mortals are capable of; a blessing that money cannot buy.

~Izaak Walton

Over the following days, my fever subsided and I began to stabilize. Every morning Dr. Levy would come barreling into my room demanding to know how I was feeling.

"Better," I was finally able to report (which wasn't saying much).

"Cool," he enthusiastically responded.

Cool? My doctor said 'cool'? My older son says cool. I looked at the fellow doctors, waddling around Dr. Levy like eager ducklings. They seemed unmindful of his youthful vernacular and acted especially high-spirited now that Dr. Klintmalm was out of town. Good gosh, my wellbeing was in the hands of these feisty pups?

"Numbers are coming down some," Dr. Levy noted.

"Yeah? Good--ah--cool," I added. Might as well talk their lingo.

My numbers did actually show some small improvement, but my strength did not seem to be returning. A trip in the wheel chair to the x-ray department rendered me breathless. Physical therapy, although limited, left me in a sweat within a matter of seconds. Finding the strength to use the bathroom constituted my most frustrating task. Even though there was a grip-bar which assisted patients in sitting and standing at the toilet, I was so exhausted by the time I had finished urinating or having a bowel movement that I couldn't find strength in my legs to stand. That the seemingly simple act of elimination called for so much energy was a revelation to me. Requesting assistance in getting off the commode choked me with humiliation. How had I been reduced to this dependent being who required help for the simplest, most personal daily functions? Out of every challenge I'd faced during my illness, this had to be the most humbling.

The focus of my life was to regain strength and independence once again. Every day I tried to walk regardless of how sick or fatigued I felt. An occupational therapist would have me squeeze play dough to strengthen the muscles in my hands. As my fingers got stronger, the therapist would embed a penny in the dough that I had to find with one hand and remove with my thumb and fingers. My progress was incredibly slow. When I would go to bed at night, I prayed for some degree of noticeable improvement the following day.

Each day I was encouraged to practice sitting in a chair. Easy and natural as sitting seems, it actually requires a great deal of muscular fortitude. By this time, my muscles were so wasted that I tended to sag in the seat. With inherent stubbornness and the assistance of supporting pillows, I'd perch myself in a chair so that I could see a small segment of the hall and observe life beyond the threshold of my room. This generally turned out to be a pleasant undertaking since I could watch other patients and their families stroll down the hallway. Oftentimes people would stop and talk as they passed:

"How are you today, Mrs. Kacher? We've been praying for you;" or "Sure hope the FK506 stops your rejection, Mrs. Kacher."

I soon found out that everybody on 14 Roberts knew my business. Much to my surprise, my quiet, reserved husband seemed to know their business as well! As people passed, he would fill me in on their condition, whether they'd had rejections or infections, their marital status, and where they were from.

"That's Bunny's sister. Bunny is the lady next door. She had her transplant right after you. Her husband was in Saudi Arabia at the time, so her sister is staying with her. Bunny's liver is doing well, but she is having trouble with her bones. They break easily from her long term liver disease;" or "Oh, that's Donna and her husband. They're from the valley; he's a minister. About a month ago, Donna felt ill and left work to go home and rest. She was found later that day in a coma. After being diagnosed with an unusual strain of hepatitis and acute liver failure, her hometown doctors arranged to have her flown to Dallas. She received a liver the day before you got your first one. She's a "cross-match" just like you. She and her husband have two small children."

"Who's that old gentleman that keeps walking back and forth, Ernie?"

"I don't know his name, but he's a patient. That's right! Looks good doesn't he? Had his transplant about two weeks ago and has been going strong every since. I saw him down in the cafeteria just the other day."

"In the cafeteria!" How amazing. Why, walking from my bed to the chair was physically taxing for me. This man must be in his late 60s at least. There he was, in street cloths, walking like a regular person. He didn't even have an IV. Turning to Ernie, I asked, "How come I'm not getting any better? Since I've been here, I've watched people who were transplanted long after I move on to Twice Blessed apartments."

"You've had two transplants," he reasoned. "It takes longer to recuperate."

I acquiesced by nodding my head, but something didn't feel right; I wasn't getting measurably better.

Approaching the doorway came another visitor. Recognition filled me with emotion. It was Ruth—all the way from Houston.

"Oh, Ruth, you're here."

For the first few moments all we could do was stare at each other.

"Ruth?" I finally said in a choked voice, "now I know." She nodded in agreement, her face twisted with grief and understanding. In silence we looked into each other’s eyes as they filled with tears and reflected the pain and uncertainty of this ordeal called transplantation.

Back home, in Pearland, my children's new school year had started. I had seen to their clothes and school supplies early in the summer. Nevertheless, not being there to help them put their school year in motion left me feeling sad. Between my husband, parents, family, and friends, John and Michael's needs would be met. Their lives were going on without me.

It wasn't like a mom, though. Nobody can take the place of a mom. When my nurse came in that evening to take my vital signs, she noticed my unhappiness.

"What's wrong? Are you feeling all right?" she inquired.

"I miss my children. We've never been separated for more than a couple of days."

My hunger to touch them, to smell them, to look at their faces, had grown overpowering. Their photographs were taped to the end table by my bed; a constant reminder of what I had to live for. Tears came to my nurse's eyes.

"Yes, yes, of course. When will you get to see them?" she wanted to know.

"This weekend. They are flying in from Houston.

"That's wonderful! The weekend will be here before you know it, you'll see," she said. "And you must tell me all about their visit next week when I get back on duty."

My nurse was right. Before I knew it, the weekend had arrived.

That morning a nurse assistant helped me wash my hair and bathe. I wanted to look nice for Ernie and the children. After putting on a clean gown, I carefully sat up in bed so that my hair wouldn't be crinkled as it dried. Hunting through the drawer of my bedside table, I found my cosmetics and carefully coated my lips with a pink gloss. Before I put down the hand mirror, I admired my eyes. They were white again after all these years! How many times had I lamented to Dr. Sachs about yellow eyes? If he could see them now, he would truly be pleased for me. This liver had to be working if my eyes were this white. The mainline from my neck had been pulled a week or so earlier, but I still had the one under my collarbone. It kept popping out of my patient gown. The three stubby tubes with their colorful caps would playfully bob around my neck every time I moved. I carefully tucked the tubes inside my gown and put on a robe. Now I'm ready.

Every few minutes I'd leave my bed and peer down the hall. I felt proud that I could stand and walk to greet my children. My eyes teared with a gratitude I finally felt for my physical therapists. Checking the hallway once again, I saw my children. These little people whom I had birthed, nurtured and loved so completely were before me at last. I wept at the sight of them.

"Mommy's just happy to see you," I tearfully explained.

Returning to my patient room, I sat on my bed and the children and Ernie sat in chairs across from me. For the first several minutes, conversation was awkward and strained.

"What's that?" John asked, pointing to my lower neck.

Oops. Looking down I saw the tubes from my subclavian mainline peeping out, wagging their colorful tips and clips.

"That's just my southwestern jewelry."

"Oh, mom!"

"Okay, it's a fancy IV for my medicines," I admitted.

My younger son, Michael kept scrutinizing my face. Finally he said, "Your eyes look weird."

My older son nodded his head in agreement.

"Weird?" I questioned, looking into my hand mirror. Then I realized that the children had no memory of my eyes being white! What was normal coloring for everyone else, looked unusual on me.

"That's right, my sclerae are white now. You'll get used to it."

Ernie left to get sandwiches and fruit for our lunch. We could picnic in my room. Left alone with the children, I basked in the tranquility of the moment . . . no needles, no therapy, no invasive procedures, and no demons lurking on the sidelines waiting to pounce. What luxury. Soon, John and Michael began telling me what happened since I had flown to Dallas for my transplant: There was a new boy Michael's age who moved into our neighborhood. His name was also Michael and they had become good friends. John didn't like band anymore and wanted to quit. Michael wanted to take karate lessons. They didn't like grandma's food. It was too rich. And our little dog, Petey Boudreaux, missed me. He waited every night on the landing of their stairs for my return.

The weekend passed quickly. Ernie went home with the children and mom and dad returned to Dallas. My numbers were still crazy; one day down a little, the next day up. One morning as the team gathered around my wall chart, Dr. Levy put his hands to his head and demanded quiet.

"I need to think!" he emphatically exclaimed.

"Let him think!" I told the fellows and resident doctors. Do I have to give them my teacher-look to get them to quiet down? I wondered. I had grown quite fond of Dr. Levy during my stay in Dallas. In some ways he reminded me of my older brother. He was warm and funny, and very attentive. If he needed to think, I expected the rest of the team to give him a little quiet time.

The bantering quickly stopped. Finally, he decided that they were going to biopsy me again.

Again! Damn. Just when I was really starting to like him.

"Dr. Distant?" I cried out.

"I'll be back," he assured me.

Late that afternoon the biopsy returned. It was negative for rejection but revealed that I had cytomegalovirus (CMV as it is commonly called). Before my transplant I was negative for CMV. Dr. Husberg said I had very “clean” blood. It must be a nosocomial infection (a disease acquired in a hospital). The virus could be treated with a type of chemotherapy for 14 days. This should stop it. Slowly, my numbers began coming down. Finally, Dr. Levy ordered my release to Twice Blessed apartments.

Mama took down all my get-well cards and photographs and collected my personal items. The room looked stark. The transplant coordinator stopped by to make sure I knew when to take all my medicines, the signs of rejections and infections, and which days to return for lab work.

That afternoon, I was wheeled to a hospital entrance where my dad waited in his car. Even though the apartments were just a couple of blocks away, I did not as yet have the strength to walk that far. Rolling to the patient pickup area in my wheelchair I felt as though I was traveling through a miasma of rank air. Looking around I saw groups of nurses, patients, and visitors smoking cigarettes. The nicotine smoke hung heavily in the air. Old stubs were scattered on the grounds. Since smoking wasn’t allowed in the hospital, smokers retreated to the closest outside area for their tobacco breaks. It was disgusting—not just the choking smell, but that these folks were putting poison in their bodies—by choice!

I gratefully climbed in dad’s car and off we went to the Twice Blessed complex. We had been assigned an apartment on the ground floor at the corner. It was a great location since it was close to the parking lot. Upon reaching the apartment, I paused to size up the two stairs and front porch that preceded the entrance to the door. The stairs looked like formidable obstacles. Taking hold of the wrought iron railing with both hands, I pulled myself up first one, then the other step.

"That wasn't so bad," I mumbled to myself as I lunged towards the door for support. I wanted to throw my head back and laugh. I'd made it! Instead, tears ran down my cheeks as I stepped inside. Yes, I had made it . . . twice blessed, at long last.

Where's My Daughter?

Trust not your daughters’ minds

By what you see them act.

~Shakespeare, 'Othello'

My stay at Twice Blessed apartments was short lived. I was readmitted to the hospital two days later with a fever. After several days of IV medications I was released to the apartments once again in time to greet my husband who was due to arrive that weekend. He would be staying for a week.

Twice Blessed was a friendly place to stay. All the occupants were transplant patients or their family members. Neighbors could be found barbecuing on the apartment grounds or walking down the sidewalks under large pecan trees. In front of my complex was a swing set for children.

Wednesdays were craft days for Baylor's liver patients. We would all meet at an annex located across the street from the Twice Blessed apartments. Supplies and instructions were available so that we could make seasonal craft items. The annex had a modest library with books and videos for patients to check out. Thursday evenings, the annex was also put to use by Lively Livers, the local liver support group and Dallas’ Junior League. They helped sponsor a weekly dinner for all the liver patients and their families. Once a week, a shuttle bus would come and take transplant patients and their families on shopping excursions or field trips. Baylor made sure that transportation was available for patients who were still too weak to walk to the hospital from the apartments. All in all, Twice Blessed was a pleasant place to recuperate.

The guy living next door to us had his liver transplant several weeks before I had mine. He had an autoimmune disease of the liver called sclerosing cholangitis and had suffered from his disease for at least 20 years. He told us that several years earlier his doctors urged him to proceed with a liver transplant since people with sclerosing cholangitis have a high incidence of primary liver cancer. He decided to wait since the success rate for liver transplantation was low back then. Finally he got so sick that he agreed to a transplant, but his evaluation revealed a primary liver cancer. Since the tumor appeared to be confined to the liver, the liver team went ahead with the transplant. Soon he would undergo chemotherapy as an additional precautionary measure. In the meantime this guy would sit on the porch outside his apartment for hours every day carving figures out of wood. His hands shook so violently from the medicines that I wondered how he kept from slicing off a finger. Just as he brought his whittling blade to the wood, his hand would steady. The finished product was remarkable. His detail was outstanding.

As much as I liked living at the apartments, I was one of those patients who could never seem to stay out of the hospital for more than a couple of days. Either my blood work (which was never normal) would worsen, which obliged me to return for a biopsy, or I'd get sick with a fever. One evening I began having chills that ran up and down my spine. Once again, I was readmitted to 14 Roberts. After multiple tests and x-rays, a diagnosis of a pleural effusion was reached. This is the medical way of saying I had fluid around my lungs.

One of the fellow doctors, Tom Renard, came to my bedside with a blue wrapped tray. My nurse, Allison, accompanied him. He explained to me that he had to place a tube in my chest and drain off the fluid. It seemed that the lower lobe of my right lung was collapsed and the fluid was keeping it from re-inflating. Normally, I liked Dr. Renard. When the team made rounds, he would come bouncing into my room full of nervous energy. It always appeared to me that his thoughts were miles ahead of most of the team. I sensed that life moved too slowly for Tom Renard. Stepping up to my wall chart he would quickly access the numbers then impatiently shift his weight from foot to foot, eyes dancing with a slightly mischievous glint, as though restraining himself while his colleagues had their chance to analyze my laboratory test results. Dr. Renard was quick—a man of action. I actually enjoyed watching him, but now I was beginning to suspect he was going to hurt me.

"This sounds painful. Is this painful, Dr. Renard?"

"Yes. Yes it is," he admitted. "We have to do it though. You have an infection in this fluid around the lung. Later you will thank me."

"How much later?" I sullenly whispered.

My nurse looked glum as she unwrapped the blue sterile tray. Great! I can tell she really loves being in on this procedure.

Dr. Renard began by numbing my right side about a hands width down from my armpit.

"You'll feel some pressure," he said.

Pressure? It felt as though he was trying to force a sawed-off shotgun between my ribs.

Suddenly, I felt a piercing jab, then gnawing pain as he moved his tube around. I was sweating profusely.

"Is it in place yet?" I panted.

"Not yet." Then to the nurse, "We might have to use a larger tube."

"Larger tube! This one's killing me. I'm beginning to get mad, Dr. Renard!"

Luckily, or perhaps due to his skill, the fluid surrounding my lung began to flow through the tubing. Dr. Renard quickly connected it to a tall rectangular-shaped, clear plastic container. He wanted to measure how much fluid was drained.

"The tube's in place. It's over now," he wearily stated.

"Over? And you thought I'd thank you for this! Well, I do not thank you. Every breath I take hurts," I gasped.

All the while, my husband stood at my side, pale, a fine beading of perspiration spreading across his forehead.

Addressing my nurse, Dr. Renard requested that she start me on a morphine pump.

"Next time, give your patient morphine before you puncture, doctor," I sarcastically insisted.

He looked frazzled. I wasn't sorry. As he left, he assured me that I was going to feel better. I wouldn't look at him, though.

This time I remained in the hospital for a week. To make matters worse, my CMV was back. I would have to be treated with IV chemotherapy again. Walking down the hall, I'd push the IV pole with my left hand and toted my plastic, fluid-filled container, which was connected to my chest tube with the other hand.

"What's that? The newest handbag from Paris," a fellow patient joked in passing.

"Right," I smiled. "Smart ass," I whispered to mom after we passed him.

"Detna! That doesn't sound nice. Where's my daughter? I don't know this person."

"Yeah, yeah, I know. Listen, mom. You know that guy, Robert, from my Houston support group?"

She nodded her head yes.

"He thinks he may have taken on some of the behavioral characteristics of his donor!

Crazy, huh? Yeah, I thought so, too. Just the same, Ma, I've been giving it a lot of thought. I never used to cuss. Think about it. Furthermore, just the other day I caught myself sitting with my legs open! That's right, and you know my second donor was an 18-year-old male. I know the doctors would say that it's the medicines, but I'm beginning to wonder if Robert wasn't on to something. How do you explain the fact that I used to like broccoli and now can't stand it. And what about salads? I never used to care for salad greens. Now I can't seem to eat enough of them. So, what do you think?"

"I think you're crazy. You must be my daughter!"

"Okay, Ma. Don't take me seriously. So you didn't lose a daughter; but I'm trying to tell you, I think you might have gained a son."

There's No Place Like Home

Stay, stay at home, my heart, and rest.

~Longfellow

October 1992: After weeks of having support people stay with me in Dallas, I suddenly found myself quite alone and frightened. Mom and dad had gone home to take care of personal business and look in on grandma. Ernie had to return to work in Houston. He had already used all his vacation time. Fortunately, I had recovered enough strength to visit and become acquainted with some other patients at Twice Blessed. One lady, Leigh, who was from Arkansas, lived at the opposite end of the complex. Hepatitis C had ravaged her liver. Leigh didn't even know she had hepatitis until she got extremely ill. She received a liver about a month after me. Her two adult daughters were helping to take care of her. They had left their husbands and children in Arkansas to provide support for their mom. They were the sweetest young ladies and both very devoted to their mom’s wellbeing.

In the complex next to mine lived a young couple, Mary and Amado. They were from the valley near the Texas/Mexican boarder. Mary was the patient. She was my age. She got ill suddenly from an unknown type of hepatitis that quickly damaged her liver. Her doctors advised her husband, Amado, to bring her to Dallas for an evaluation. She was so sick upon arrival that she was placed in ICU until a donor liver was found. Often, I'd observe Mary and Amado walking around the apartment complex while she was recuperating from her transplant. After my folks left, Mary would come and visit me in the evenings. Sometimes, when I felt strong enough, I would walk around the complex with her and Amado.

The month of October marked two months away from Pearland. I was growing increasingly homesick, especially now that I was without my family. My numbers seemed to stabilize somewhat after my chest tube episode and I appealed to the doctors to let me fly home for the week of my birthday. I promised Doctors Husberg and Distant that I wouldn't leave Dallas until Tuesday evening after the results of my blood work and that I'd return the following week in time for next Tuesday's lab. They agreed! At last, I was going home.

The night before I was to fly to Houston, I packed and repacked my suitcase. Home. It seemed too good to be true. The following morning I went to the hospital for my lab work.

After returning, I went to visit Leigh and her daughters and Mary and Amado. I couldn't remember when I had last been this excited. After lunch, I sat patiently in my apartment, waiting to see if a coordinator would call. All transplant patients who are no longer hospitalized were expected to be in their apartment between 1:00 p.m. and 5:00 p.m. on lab days. In the event something is wrong with a patient's numbers, the coordinator could be assured of reaching them. Watching television, I silently prayed that my numbers wouldn't go crazy and keep me from going home as planned. At exactly 4:55 p.m., the phone rang. It was one of the transplant coordinators calling to say that my numbers had once again gone up and I needed to check into the hospital the following morning for a biopsy.

I felt like a punctured tire; deflated and disabled. If things had gone right, I could have been home by 7:30 that evening, sitting in the living room with my family instead of pining for them in this lonely little apartment. My husband and children were expecting me. My folks were expecting me. My brothers and their wives were expecting me. My best friend, Linda, was expecting me. Everyone was expecting me. Once again I was utterly helpless, a slave to my unpredictable recovery. I needed to be home and feel safe again from phone calls that told of hospital stays and needles and medicines that made gave me headaches and nausea. For the past week, I had reached inside my head and pulled out memories of home. I would thumb through them fondly like photos, lingering over each one, hungry for details. In thirty minutes, my husband would be leaving for the airport to meet my flight. I needed to phone him right away. It was painful to call with news that I wouldn’t be arriving that evening.

Later that night, feeling alone and depressed, I was distracted by someone knocking at my door.

"Maybe it's Mary and Amado," I hopefully thought.

Peeping through the drapes I saw a solitary figure standing by my door. It was my husband! I flung the door open.

"You're here!"

He knew I was homesick and flew to Dallas to be with me during the biopsy. Suddenly, life didn't seem so bleak. How had I gotten so lucky having this man in my life?

The following afternoon I waited in a hospital room for results of my morning biopsy. When it came back, it did not show rejection and my numbers had actually begun to go down.

"Can I still go home for the rest of the week?" I implored. Permission was granted. Ernie and I hurried to Twice Blessed apartments. I called my folks and children and told them we were flying home that evening. Still weak and out of shape, I had wheelchair assistance at the airport. Since I was going to be around a crowd of people, I was advised to wear a surgical mask to avoid catching a cold or some other germs. Nevertheless, I was thrilled to be out and around regular people once again. I excitedly watched the people as my wheelchair progressed to our terminal. The odd thing was, no one would look at me. I felt as though they would catch a glimpse of me and then avert their eyes. How odd, not to be visually acknowledged. Was it the mask, or the wheelchair, or both? Had my mainline tubing with its colorful caps popped out of my blouse? But, no, it was still undercover. Hmm—life is certainly different when one is seen as sick or disabled. In a way, I felt lonelier amongst all these regular people than I had at the hospital or Twice Blessed apartments.

Upon reaching the departure terminal, we were told that there would be a considerable delay due to thunderstorms and heavy rains. The weather in Dallas had turned ugly. The rain was strong and persistent.

"I guess we can eat," Ernie said.

"Okay."

Ernie parked me at a table while he went to a serving line to buy us some dinner. A family at the table next to mine picked up their food and moved to an eating area further away.

Surprised and insulted, I loudly told them, "I am not contagious, you guys. I've had an organ transplant and this mask is to protect me from you! …so there."

They never even looked up.

Our flight was unable to leave until late that night. Soon after takeoff the pilot came over the intercom and asked that we not remove our seat belts. It seemed that weather conditions were still turbulent and our arrival time in Houston would be delayed so that he could "skirt" the area.

"Didn't we 'skirt' on the way to Dallas or is this a deja vu?" I asked.

Our 55-minute flight took almost two hours.

"We must have 'skirted' to South America!" I told Ernie as we exited the jet.

By the time we landed and drove to our neighborhood it was very late.

"The children will probably be in bed," I told Ernie. But as we approached our house, I could see lights from within.

"Maybe they are still awake!" I hopefully said.

Usually we come and go through the back door. When I left to have the transplant, though, I exited through the front door.

"Ernie, park in front. I want to return the same way I left."

The children and my parents were waiting up for us.

"I'm here," I simply stated, not permitting myself to be besieged by the griping emotions of this long awaited homecoming. If I cried, I didn't know if I could stop.

Take it easy, I told myself. Just fill your eyes.

Everything looked just how I remembered, yet different.

Is this reality, or merely a blissful mirage contrived by my mind to help sustain me?

Walking over to the family room, I ran my hands over the couch. It felt good! Looking down at our little black dog, Petey, I whispered, "Well, Toto, there is no place like home."

Strictures and Stents

The human body experiences a powerful gravitational pull in the direction of hope. That is why the patient's hopes are the physician's secret weapon. They are the hidden ingredients in any prescription.

~Norman Cousins

During the rest of October my doctors permitted me to fly home each week after my blood work. Frequently I had to stay in Dallas for additional tests when my numbers would go up. No one could explain why my numbers continued to fluctuate. It wasn't due to rejection. I had not had a rejection since I went on the experimental drug FK506.

Usually, patients are released three months after transplantation if they have no complications. My three months would be up October 31st, but I knew that I wasn't ready to be released. I had experienced one complication after another. Something was wrong.

My fears were validated, when, towards the end of October, while picking up a computer printout of my lab values from the transplant service suite, Dr. Levy expressed his concerns. He had just returned from a brief vacation. Coming over to the couch where I was waiting, he sat next to me.

"Detna, I was thinking about you this weekend."

Oh, no—he was thinking about me during his time off. This is not good.

"Yes?" I tentatively asked.

He went on to say that something must be wrong with this liver. I knew it! My numbers oscillated so wildly, why most were not even close to normal. He wanted me to check into the hospital the following week for tests.

More tests!

Many of the patients who had transplants when I did were now preparing to go home. They were being released and would not return to Dallas until the anniversary of their transplantation for an annual check-up. As they departed, I was filled with envy.

Once again I was in a hospital gown on my way to radiology for diagnostic tests. They would perform two different exams. One was called an angiogram. The radiologist would deaden the area by my groin, and then place a needle in the artery. After placement of the needle, a flexible wire would be threaded through the needle. The needle would then be removed and a catheter would slip over the guiding wire and snaked to the vessels that supply blood to the liver. A radiopaque dye would be injected and x-rays taken so that the radiologist could see if the vessels were open or constricted. After the angiogram, the radiologist would deaden my right side as though preparing me for a liver biopsy. A long, thin needle would be inserted into the liver. An x-ray monitor would allow the doctor to see placement of the needle. Small amounts of dye would again be injected until the needle was placed in a biliary duct. There are many ducts, which connect and branch throughout the liver to carry bile. X-rays of the dye going through these branches would reveal any abnormalities in these bile ducts.

How I dreaded these exams. After everything I'd been through one might think I'd get use to these invasive procedures. These days I was more skittish than ever when I had to have diagnostic tests and would shake like a scared dog. I had actually ground down my teeth and shifted their position from clamping down during the many tests I was subjected to. And to think of the money my folks had spent on orthodontia. Luckily, the radiologist was kind enough to administer a sedative through my IV and both exams went quickly and smoothly. I didn't have to grind my teeth once. Soon I was transported back to 14 Roberts to recuperate and wait for the test results. That particular day several patients from Twice Blessed Apartments had to be readmitted. We congregated in the halls and alternately joked and sighed about our medical hardships. My neighbor from Twice Blessed, the woodcarver, was also back on 14 Roberts that day. His numbers had been unstable since his transplant and he was in and out of the hospital. He seemed withdrawn and didn't attempt to socialize with the rest of us. I guess he was depressed. When I stopped by his room to say hello, he smiled at me cynically and asked if I had yet reached the point where I was sorry I had the transplant. His wife looked embarrassed.

"No. No I haven't reached that point yet," I replied and then left.

A little later Dr. Levy showed up on the floor. He was a great favorite of the patients and staff. All the patients happily greeted him. He smiled at us then went directly to the woodcarver's room, shut the door, stayed about 15 minutes, then left.

Later that day word quickly spread that the woodcarver's cancer had returned. Since cancer transplant patients are immunosuppressed, his cancer would now spread quickly and he would probably die before the year was out. A collective sadness engulfed us and we returned to our rooms. Moments later, the woodcarver appeared at my door. I was surprised. He sat down and for the next hour we laughed and visited, never addressing the subjects of transplantation, rejection, or cancer.

Why, he's very pleasant and funny, I realized. When he left to go back to his room I noticed him waving to other patients and stopping to talk. He seemed almost relieved and carefree.

With patients and nurses stopping by and visiting, the afternoon passed quickly. Soon, the doctors would be making their afternoon rounds. Maybe they would have the results of my exams.

By 4:00 my husband and I could hear the gathering of the doctors for afternoon rounds. The buzzing of their voices increased with intensity as they moved down the halls and got closer to my room. Just when I expected the group to noisily enter my room, there was silence. Surprisingly, Dr. Levy entered my room alone. I looked at my husband with confusion. Where was the rest of the team?

"I have the results of your exams," he began. "The angiogram is normal, but the biliary study reveals multiple strictures in your bile ducts."

He paused and I tried to figure out what it all meant. During my stunned silence he discussed a procedure whereby an interventional radiologist inserts a little spring-like device called a "stent" with the assistance of a catheter into the constricted area of the duct. Once the spring is released it expands and opens the narrowed area. This procedure works best for patients with a single stricture in an easy to reach duct. I had multiple strictures, though, which were in difficult to reach places.

He went on to explain that even if they decided to try and place the stents complications might arise. Since this was a relatively new procedure, there was no way of predicting how long the stents might help me.

"You mean I might need another transplant?"

"Yes, you'll probably need another liver."

After everything I'd been through. It didn't seem right. Nothing seemed right. I'd been a very good patient and done everything, everything my doctors asked. Instead of getting on with my life, I'd be waiting again. There would be ICU, more tubes and biopsies, and physical therapy. Feelings of shock and self-pity began to engulf me. I wanted to weep. Looking at Dr. Levy, I remembered all the times he studied my chart trying to figure out my why my numbers were so high. How many times had the nurses contacted him late at night when I had a fever? All the time and energy the doctors and nurses had devoted to keeping this liver functional. All was in vain. The depth of my disappointment was profound. Dr. Levy stood quietly at the foot of my bed, allowing me to digest the news. It can't be easy delivering this kind of news to patients. I felt so sorry for him.

Before leaving, Dr. Levy told my husband and me that he was going to discuss my case with Dr. Klintmalm later that afternoon. Dr. Klintmalm had been in surgery all day and did not know the results of my tests yet.

Why don't I cry? I wondered.

"Let's go for a walk," I suggested to my husband after Dr. Levy left. We walked around the nurses' station to the patient lobby. There we met an older couple. The woman explained that her husband had been called in for a "possible" liver transplant. He was on standby. It seems that a liver of his type and size was available although the team hoped to use the organ for a patient who had liver cancer. If the cancer hadn't spread beyond the liver, the transplant would continue as planned and the standby patient would go home. If, however, the cancer had spread beyond the liver, the donor liver would be used for the standby patient. After a while, a nurse called the gentleman from the lobby back to an office. He returned moments later, pale and shaky.

"The liver will be for me. The nurses are going to get me ready now," he told us.

Soon my husband and I were left alone in the lobby. Continuing to feel numb about my bile duct strictures, I wasn't ready to face the four walls of my room. It was too confining. Looking through the slats of the lobby’s vertical blinds, I felt like a captive animal. Would I ever be free again? I was reminded of a book, I Know Why the Caged Bird Sings, by Maya Angelou. It was a very insightful autobiography about the struggles and oppression of African Americans. Now her book spoke to me as never before. My illness could never match her struggle, yet I felt a spiritual connection to this woman I had never met because I had known the prejudice of liver disease and the gripping oppression of chronic illness.

"Yes, Maya, now I too know why the caged bird sings." But at that moment, I could not find a song to sustain me.

Exiting the lobby, we passed by the nurses' station. As usual, we stopped to chat with them. The 14th floor nurses were never so busy that they couldn't take a few minutes and talk with their patients. In many ways they had come to feel like family. A few minutes later Dr. Klintmalm appeared on the floor. He had been in surgery attending to the patient with liver cancer. Still dressed in surgical scrubs, he would soon be getting ready to transplant the standby patient. He appeared thoughtful.

Why, he even looks elegant in rumpled scrubs, I thought. How does he do that? Looking across the nurses' station, he caught my eye and solemnly smiled.

"How are you doing, Mrs. Kacher?"

"I’m okay," I told him.

He began talking about how important it was to get the results of my exams back so that they could figure out what was wrong with my liver.

I walked over to him.

"My test results are back," I told him. I have multiple biliary strictures."

At first he didn't seem to understand what I was saying. I explained to him that Dr. Levy had already been given the results of my recent exams. Comprehension and surprise registered on his face. Looking toward the nurses he began giving orders concerning my chart and radiographic exams. There was a whirlwind of activity at the nurses' station as they followed through on his requests. Turning back to me, Dr. Klintmalm put his hands on my shoulders and assured me that he was going to see what could be done. I rested my head on his chest. Now I could cry. His compassion allowed me to feel all the disappointment and despair I had stuffed deep inside.

As busy as he was, Dr. Klintmalm contacted the head of interventional radiology and discussed my case before leaving the floor. The radiologist agreed to try and place the stents.

"This radiologist is the best," Dr. Klintmalm informed us. He reiterated his belief that everything would be all right.

"Someday you will feel like a mother and a woman again."

I looked away with disbelief. Could he be right? Is it possible that even a semblance of normalcy will follow this chaos? He made me look at him though, and asked me to believe him.

"Yes," I finally agreed, "I believe you."

And I did. Saying it gave me strength. Now was not the time to feel defeat. Dr. Klintmalm was right. I have to believe everything will be all right. Without that belief, I might lose hope and die. How wise this doctor was. With my affirmation, he left, returning to the operating room where yet another patient awaited him in hopes of a new lease on life.

Norman Diamond—

Radiologist Extraordinaire

True miracles are created by men when they use the courage and intelligence that God gave them.

~Jean Anouilh

Early the next week, I was sent to the x-ray department for placement of biliary stents. After leaving my patient chart with the radiology nurses, the transporter parked my stretcher in a hallway just outside an x-ray examination room. Although the door to the room was closed, a low moaning voice could be heard from time to time. Occasionally the voice would escalate into a painful scream.

Good heavens! What was going on, I wondered? I called out to the next nurse who walked past my stretcher.

"Nurse, what's wrong? Why is there screaming in there?"

" Don't worry, they're almost finished," she assured me.

Finally the moaning stopped, the door opened and people in perspiration-soaked scrubs began exiting. A short time later a patient on a stretcher was wheeled out. I glanced over sympathetically. Approaching my stretcher came a man who seemed to spring with intensity and purpose when he walked.

"I'm Dr. Diamond," he announced.

I immediately asked him about the previous patient. He explained that this patient was having stents in hopes of delaying a transplant. Since she hadn't had a transplant, her level of pain was greater. Transplant patients did not feel as much pain since their extensive incision severed nerves. I would be given a generous amount of pain medication regardless. Dr. Diamond went on to discuss the placement of my stents. My strictures were in very awkward-to-reach places, which meant the procedure would be lengthy and difficult. My right side would be deadened. A catheter would then be inserted from different areas of my liver in order to reach each constricted bile duct. When the catheter was in place, a titanium stent would be released. Once discharged, the stent cannot be removed. If deposited incorrectly, a stent might actually block a duct.

"What I'm trying to tell you, Detna . . . if a stent is not placed in the right area, there is nothing I can do . . . Them's the breaks."

A moment of silence followed as I looked into the eyes of this no-nonsense doctor. I appreciated his candor.

"Just give me plenty of your knock-out medicine, okay?" By this time I had learned: Don't bite the bullet. Take your medicine and fly away.

I was wheeled into the exam room and placed on a slender table. Under it was an x-ray tube. Hanging above the table was a large cylinder-shaped device called an image intensifier. It would intensify the x-ray image of the bile ducts and convert that image to a television monitor. This allowed the radiologist to watch where he was going with his catheter during the procedure. A nurse quickly began putting little round adhesive pads on my chest. Each pad had the receiving half of a snap in the middle. These were electrocardiogram leads, which would monitor my heartbeat. An oximeter probe was clamped on the middle finger of my left hand. As I inspected its glowing red light I was reminded of my "alien" experience in ICU. On my left arm, a blood pressure cuff was secured. Every few minutes it would inflate. A monitor suspended above the x-ray table displayed my blood pressure and heart rhythm. While one nurse was preparing me, another was covering a stainless steel table with a blue drape. On the draped table she placed a large tray that revealed a multitude of instruments. Solutions were carefully poured into glass vials. Various catheters were added to the array of sterile implements. What an ironic twist of fate. Many years ago, as a special procedure radiographer, I had worked alongside physicians in rooms very similar to this. Back then I had felt confident and comfortable in my surroundings preparing sterile tables and scrubbing in with the doctor. Now, as a patient, the room looked foreign and intimidating. It was all very puzzling. How had I ended up on this side of the x-ray table?

Dr. Diamond reappeared and began putting on a sterile gown and gloves. It was time for me to go to a "safe place". I had found that even though I couldn't physically run from invasive exams and pain, I could escape to a designated safe place in my mind. Often it was to my birthplace, Galveston Island. I would imagine myself on the beaches where I would lounge in the warm sand and let the gentle gulf breeze blow over me. In my mind I was free. Just before Dr. Diamond deadened my side he asked the nurse to administer some medications through my IV. Within seconds the effects of the medicine were recognizable and I quickly fell into an inert mass of helplessness, immersed in the sand of my safe place. Initially, the procedure was not too painful, but each time the doctor would dilate a constricted area with a stent, I would feel a deep, painful throb. Throughout the procedure, Dr. Diamond would ask one of the nurses to give more medication. Although heavily sedated, I continued to feel a persistent, aching pressure.

And this is more severe for those who haven't had liver transplants, I incredulously thought? Oh, doctor! Some of my nerves must still be intact.

Although I was aware of the pain, the medication seemed to have distanced me from its rawness. It was similar in some respects to the sensation one experiences when outside a room full of people; the dim roar of conversations although audible, is not distinguishable. The pain was still there, but certainly not as palpable.

Occasionally, Dr. Diamond would mutter with annoyance.

"What's wrong?" I'd try and ask.

He scarcely acknowledged my question so intent he was on directing his catheter. Hours later, the tedium of the procedure was brought to an end. Half of the stents were placed.

The next day, the rest of the stents were inserted. Two long clear tubes were left in the liver. One emerged on my right side at the site of biopsies, while the other emerged just under my breastbone. Both tubes were attached to bile bags. Before sending me back to my room on 14 Roberts, a radiopaque dye was injected into the biliary system while its image was displayed on a TV monitor above the x-ray table. There, branching out like an extensive root system were my bile ducts, all open and draining magnificently. My gosh! He'd done it. I was filled with wonder and appreciation.

Over the years, I had worked with many excellent radiologists at the Texas Medical Center in Houston, but never one of this caliber. He was a marvel, a godsend, a . . . a radiologist extraordinaire! Norman Diamond, M.D.—I'd never forget him.

Life Flight!

Calamity is man's true touchstone.

~Beaumont and Fletcher

The sense of euphoria following my successful stent placement quickly wore off every time I got out of bed and attempted to contend with my biliary tubes and bile bags. Each tubing was about five feet long and not only awkward but painful.

Bed is a transplant patient's worst enemy. The maintenance medications we are required to take reduces both muscle and bone mass as does continued bed rest. The only way to counteract this muscular atrophy is to keep moving. Despite my present discomfort, I'd resolutely totter down the hospital corridors, a tube in each hand, bile bags dragging the floor. Every step I took seemed to initiate pain deep inside my liver. Much to my dismay, I eventually began to spend more time in bed.

Dr. Diamond would frequently come to my room on 14 Roberts and check my tubing. The first time he appeared I was stunned. I had never known a radiologist to call on patients once they left the x-ray department. But, yes, here was a radiologist who made rounds.

At a week's end, the pain began to subside. It was now early November and the Dallas doctors decided to let me go home for several weeks to recuperate—tubes and all. At the end of six weeks, I was to return to Dallas. If everything was all right, the tubes could be pulled and I would be released. While at home, I would be under the care of Dr. Bridges. Hopefully the stents would allow me to keep this liver and prevent another transplant. Only the presence of my biliary paraphernalia kept me from jumping for joy.

"Can't you take these tubes out before I leave?" I hopefully inquired.

Dr. Klintmalm explained that the bile bags could be removed but the tubes must be left in place for a while in the event I developed an infection at the site of the stents. Since transplant patients' immune systems are suppressed to prevent rejection of the donor organ, we are very susceptible to a host of infections. This risk declines as maintenance medications are slowly lowered the further out a patient is from transplantation. My liver had been traumatized by the stents and I was still taking high doses of immunosuppressants making me very high risk for infection. The doctors instructed me to check daily for fever, which could indicate a bile duct infection. If fever occurred, I was to attach both bile bags to the existing tubing and call the transplant team immediately. It was imperative in the event of a bile duct infection that the bile drain out of the body into the bags and not backup into the blood stream. Once infected bile is in the blood, the infection is carried all over the body resulting in a systemic infection. Systemic infection! Those were two words that strike fear in the hearts of all transplant patients. Dr. Klintmalm wouldn't hear any argument from me concerning the tubes . . . for the next six weeks they would be my little friends.

Upon my arrival home, I went right to bed. My "little friends" were killing me. Over the next couple of days however, I started to feel a little perkier and began to ramble around the house. I quickly noticed that various kitchen appliances and culinary spices had been rearranged. During my stay in Dallas, many people had used our kitchen while caring for John and Michael. Where was everything? Facing the pantry door, I was overcome by a terrible suspicion. Clutching my biliary tubings in one hand I walked straight to the pantry door and flung it open.

"No!" I uttered with shocked disbelief.

There on the shelves were disorganized assortments of dry foods and canned goods. Peas were by mandarin oranges. Cereal was next to the tomato sauce. The labels weren't even facing forward. I felt faint with shock and leaned against the doorframe for support.

Going to the cabinet where I stored household products, I searched for the duct tape.

"Where is that damn tape? Ah-ha!" Tearing off a strip, I curled both bile tubes and taped them to the front of my t-shirt. With a zeal I hadn't felt in months, I removed every item in the pantry and systematically replaced them: peas by peas, pineapple chunks by other canned fruits, and all labels facing forward. Upon finishing, I sat down at the breakfast table in triumphant exhaustion.

"Well, I think I'll have myself a cup of tea," I told our dog, Petey. The children were at school and I found myself talking to Petey more and more. He seemed to understand me.

"Yes, some nice Earl Grey tea would be excellent, and you, Petey-boy can have a milk bone!"

That evening I sank into bed, weary but happy. The next day would be a Saturday. Ernie and the boys would be home. Yea! We were going to take the children to the movies, just like a normal family. I could hide my tubing under a big shirt. The kids were excited. It felt good to be home. I fell asleep feeling productive and content, but during the night I detected a vague persistent pain deep in my liver. Maybe I tried to do too much today and disturbed my tubes. Tomorrow I will definitely take it easy, I promised myself. That morning the pain was still present. After taking my medications I went back to bed in hopes that extra rest would make me feel better. By the afternoon when I awoke, a deep pain had spread across my abdomen. My body felt hot! I reached for the thermometer, but already knew—I had a high fever.

I called out apologetically to my husband, who was sitting across the room reading.

"Ernie . . . honey? I have a fever. Where are the bile bags Dallas sent?" He quickly walked over and took the thermometer from my hand. After glancing at it he got the two bile bags from my closet and began attaching one to the tubing. A perplexed look came over his face as he fumbled with the bag.

"What's wrong? What is it?" I asked.

"I can't get it to connect. It doesn't fit," he stated with confusion. He soon realized that the connecting part that attached to the bag and screwed to the tubing was missing. Picking up the phone, he called Baylor Hospital in Dallas. I heard him request the hospital operator to page a liver transplant coordinator. While waiting for Dallas to return our call, Ernie taped the bags to the tubing so the bile could start to drain. It leaked at the junction though and prevented the tape from adhering to the tubing. When the phone rang I snatched it up with relief. The coordinator was reassuring, but suggested that I fly to Dallas that night. I hung up and stared at my husband for a few moments.

"They want me to return to Dallas," I finally said.

Ernie nodded.

"What about the movies?" I sniffled.

He looked at me with disbelief and pity, then called and made flight reservations with the airline. In the meantime, Ernie made a trip to the drug store to pick up a pain medication the Dallas team had ordered. By the time he got home the pain was so severe I had difficulty walking. My insides felt as though they were on fire. Alarmed, my husband once again called Dallas. They advised him to take me to Dr. Bridges to be stabilized and then fly me to Dallas.

Dr. Bridges met us in the emergency room. During the examination she removed the taped-on bile bag and examined the tubing.

"There's pus in the bile," she noted.

She immediately made a call to Baylor. The nurse gave me Demerol and a tranquil cessation from the pain ensued. I was transported to a private room for the night. My parents were taking care of the children so that Ernie could stay with me.

Early the next morning Dr. Bridges arrived. She and my husband realized that I was too ill to fly on a public airline. Arrangements were made with Life Flight, Houston's air ambulance service, to transport me to Dallas.

Later that morning I was taken by ambulance from the hospital to an airport where a little Lear jet awaited us. Before boarding we were informed that the hydraulic system was not functioning properly and I would have to be transported by another plane. My life seemed to be filled with obstacles these days. The ambulance driver drove us to another area along the airstrip where a small two-engine plane awaited us. The nurses had difficulty manipulating my stretcher into the smaller air vehicle. Finally we were airborne. My breathing was increasingly difficult and I began to shiver and shake. One of the nurses said my blood pressure was dropping. I was filled with a sense of dread. A systemic infection!

Mean Medicine

Diseases desperate grown

By desperate appliances are relieved

Or not at all.

~Shakespeare, ‘Hamlet’

Upon our arrival in Dallas I was taken to transplantation ICU and immediately swarmed by doctors, nurses, and technicians. One of the fellow doctors inserted a new subclavian mainline catheter under my left collarbone. A technician drew blood at timed intervals from several different sites on my arms. I was hooked up to a blood pressure cuff and monitors. A respiratory therapist arrived to take a "blood gas" which involved retrieving blood from an artery. The therapist felt my wrist for a pulse, and then inserted a needle straight down to the pulsating artery. I was too sick to cringe. Finally, they let me rest.

For an undetermined length of time I would drift in and out of a fitful sleep awakening to my own incoherent babbling. The presence of nurses, doctors, and my husband was intertwined with distorted memories of life at home. My body would jerk and twitch uncontrollably. At times I would convulse so violently, I thought I might shake myself out of bed. Through the pain and dreamlike distortion, I heard someone telling me that I had a fungal-yeast infection in the bile.

At least they know what's wrong, I told myself.

The ICU nurses began administering Demerol for my pain. Afterwards I would fall into a heavy, troubled slumber. The doctors decided that I could return to 14 Roberts where the liver transplant nurses could take care of me. They would be administering a special medicine to combat the fungal infection.

Later, on the 14th floor, my nurse came by with some medicines.

"Is this the anti-fungal medicine?" I managed to articulate.

"No, these are preliminary medications—Benadryl and Tylenol. The fungal medicine, amphotericin B, is very strong and might make you feel bad. That's why we pre-medicate you. I'll be back in about thirty minutes with the amphotericin B."

How could I feel any worse? But by late afternoon, I definitely felt the effects of the amphotericin. My fever and shaking increased, my head hurt and I ached all over. Again Demerol was injected into my mainline. It would help calm my shakes and relieve the pain. I had great respect for narcotics and worried about addiction. As I felt myself floating away I anxiously asked, "Will I get addicted? I've had so much."

"No," my nurse assured me. "We won't let you get addicted."

"I feel so bad," I moaned. "Why do I feel so bad?"

"It's the amphotericin. We call it 'ampho-terrible' around here.”

Even though the fungal infection was being aggressively treated, my fever continued a daily upward trend. The sclerae of my eyes were yellow once again and breathing became increasingly labored. Standing or taking a few steps would render me so breathless, I feared I would pass out from lack of air. Sitting back down on the edge of my bed I would pant until I caught my breath. The doctors had me breathing oxygen through a mask. A respiratory therapist was coming daily to obtain more blood gases to see how much oxygen was in my arterial blood. One therapist got aggravated with me because I couldn't stop shaking while she searched for an artery.

"Stop that shaking," she ordered me.

Is she crazy, I wondered? Doesn't she think I would if I could?

Her probing needle was painful. Very slowly, rage seeped through me.

"Hold still!" she repeated.

"Take your needles and get out of my room," I said through clamped teeth. "Out! Out! Out! And never come back."

"Ha!" I gleefully barked at my husband after she took her exit, "Mean woman! They had better send a different respiratory therapist next time."

Finally, I grew so weak, that I couldn't get up. Would they send me back to ICU? I desperately hoped not. But no, every morning my nurse would bathe me in bed and administer medications. How good they were to keep me on the floor. I no longer felt humiliation from being utterly dependent, simply gratitude and adoration for my medical caregivers. Day and night, they would slip in and out of my room checking my IV's and monitors. I decided they must be angels.

A doctor who specialized in lung disorders was assigned to my case. Because I was having so much trouble breathing, the pulmonologist decided to put a scope down my windpipe and biopsy the lung tissue. After spending an afternoon lamenting about yet another invasive exam, I submitted, knowing full well they would eventually have their way with me.

When the biopsy results returned, they showed that my lungs were filled with eosinophils.

"So what does it mean?" my husband asked.

They explained that eosinophil’s were white blood cells, which come to the body's defense in response to an allergic reaction. My reaction seemed to be a result of the amphotericin B, they concluded.

"The ampho-TERRIBLE!" I exclaimed. And I thought OKT3 was vile stuff. Amphotericin B was really mean medicine.

A decision was made to place me on a more tolerable but less effective type of fungal medication. The full realization of how deadly these fungal infections could be was beginning to dawn on me.

"Do you think I'll get rid of this infection?" I asked Dr. Goldstein.

"We hope so," he earnestly replied.

The room fell silent as I stared at the members of the transplant team. Up until now, sick as I was, I hadn't worried about overcoming this infection. Following my transplant I had developed many infections and the team had pulled me through every time. This infection was different. Searching the faces of my doctors I stopped and looked into the eyes of Dr. Distant. His eyes looked serious and sad. Oh, no, I don't believe this.

Later that day the doctors sent me to radiology so that Dr. Diamond could take pictures of my biliary system. The results were not good. The liver had been devastated by the massive infection. The bile ducts were thready and jagged looking. Before leaving radiology, Dr. Diamond removed the biliary tubing that emerged under my breastbone so that the bile could drain from the remaining tube on my right side.

"We'll have to swap this liver out," Dr. Goldstein said during afternoon rounds that same day.

"You mean, back on the list . . . another transplant?" I asked.

"That’s right," he confirmed, "but first, we have to clear this infection."

"Okay."

That night I dreamed of my children. They appeared to me as babies. I would hold first one, than the other. The poignancy of my visions woke me. No! I was slipping back in time instead of going forward. My conscious mind finally faced what my subconscious mind already knew. I was losing ground and my chances of survival were slim. The realization was painfully shocking. This must be how people feel seconds before a plane crashes—stunned acceptance of their inevitable demise. A moan was building in the pit of my stomach. Reaching for the controls by the side of my bed I pressed the nurse's call button.

"Yes, Mrs. Kacher," came a voice in the dark. "Can we help you?”

"Demerol, please. I need Demerol."

I looked over at my husband who slept in a fold-down bed across the room. He had been at my side day and night. For him to go through all of this only to have me die. How unfair. The depth of my emotional pain was agonizing. How could my husband afford to take any more time off from work to be with me? Besides, what were my chances of surviving this fungal-yeast infection? What were my chances of surviving a third transplant? To perpetuate this nightmare—what lunacy! As I lay there, writhing in pain and shaking, I realized it was living that was hard. Dying would be easier. To maintain this struggle seemed futile. What of my children, though? I could not give up and succumb to death! I must see my children and my parents again. There was only one solution. I would go home. Yes, tomorrow morning when the doctors made rounds I would ask to be transferred to Hermann Hospital in Houston. But Hermann's surgeon, Dr. Wood, would he take me? After all, I was very sick now. Why did I leave home in the first place? It was hard to remember.

That morning when my husband woke up I announced with conviction, "I want to go home. Call Dr. Wood at Hermann and ask him if he'd take care of me," I pleaded.

Ernie was surprised.

"You don't have to do that. We know these doctors. We'll find a way."

"No, Ernie. It's time to go home. I might die you know. Yes, it's true. I'd just as soon do it in Houston. I need to be close to our family."

That afternoon, Ernie took a flight to Houston. He had business to attend to at work and home. As he left, he promised he would phone Dr. Wood that very day.

"Okay. I pray he takes me. Hurry back."

Early the next morning, Ernie was back in Dallas. "Did you talk to Dr. Wood? What did he say?"

"He said he will take you . . . and he will do your next transplant," Ernie replied.

I thought I had no more tears, but they rolled down my face wetting my gown. I heard myself saying, "Thank God. Thank God."

The doctors in Dallas wanted my condition to stabilize before I was flown back to Houston. It took a little more than a week before I was released. The evening before I was to leave, Dr. Renard came to my room to change out my mainline catheter. In his quick, efficient way, he completed the procedure in 10 minutes. How angry I had been with Dr. Renard after placing my chest tube. Now I felt ashamed. I was going to miss him I realized.

I do thank you for my chest tube, I wanted to admit, but the words stuck in my throat.

During the late morning hours of December 9, 1992, CareFlite attendants arrived and strapped me on their stretcher. Before we left, my nurses and doctors stopped by my room to tell us goodbye. They had been so good, so supportive. How bitter this parting was.

"Thank you for taking care of me," I managed to say. Dr. Klintmalm was in surgery and I didn’t have a chance to thank him for being my doctor. Even though this transplant hadn’t worked out as I would have liked, he was still my hero.

The transporters brought me to an ambulance bound for the airport. One last time I turned my head to the side to look at Baylor Medical Center. I recalled an incident, almost five months earlier, when I thought I'd certainly gone over the rainbow. Well, now I was finally leaving the Emerald City. Would I ever make it back to Pearland, Texas, though? Maybe the ruby slippers awaited me at Hermann Hospital.

Wood Works

Gratitude is the heart's memory.

~French Proverb

My arrival at Hermann Hospital triggered a sequence of memorable events. First, a multitude of nurses and doctors appeared taking vital signs and blood samples. Next, mom and dad arrived. They brought a potted pine tree decorated with tiny red and green packages. Former students and friends showed up with plants, balloons, cards, and candy. Ernie taped up pictures of our boys on the wall across from my bed. Knowing I was home and seeing family and friends gave me newfound strength. The only blemish of the day was when I learned that both my children were sick with a winter virus. I could not be around them until they recuperated. Ernie dialed our home phone number so I could talk to them.

"Mom. You're here," Michael sniffled. "Did grandma tell you? I'm sick with a fever. When can you come home?"

The children hadn't yet been told that I had to have another transplant. Oh, the grief and the guilt. My babies were sick and I couldn't be with them. A mother's cool hand is the best remedy for a fevered forehead everyone knows that.

"I'll call you every day and when you're better, dad will bring you here to see me," I consolingly replied, fighting to keep my voice from cracking with grief.

That afternoon I anxiously waited for Dr. Wood and his transplant team to make rounds. Suddenly, without warning, they appeared in my room. I could always tell when the Dallas guys were coming. They were such noisy rascals! But this team, they snuck up on me.

Dr. Wood looked just as I remembered—energetic and youthful. With him was a petite woman with a pretty round face and short brown hair. She was Dr. Clair Ozaki, another transplant surgeon. Besides the two surgeons the team included a hepatologist named Howard Monsour, two physician's assistants, John and Marla, two transplant coordinators, Linda and Marian, a resident doctor, and a medical student. I wondered where my Galveston friend, Steve Katz, was. I looked among the entourage of medical personal for a young man with dark brown hair, but I didn't see Steve.

"Where's my wall chart?" I whispered to one of the coordinators. Don't y'all look at the chart first?"

"It's posted outside your room," she assured me. "We've already seen it."

"Oh, I didn't hear you discussing my numbers."

They were certainly a sedate group. I didn't know what to make of them.

The next day was spent going from one ancillary department to another. Dr. Wood had ordered a multitude of diagnostic tests. These Hermann people were wearing me out. Didn't they know I was a sick woman?

That afternoon doctors Wood and Ozaki came by to discuss my condition with me. The results of my tests were coming back. It appeared that my kidneys were damaged from the harsh medications I had to take. If they did not improve I might need to have a kidney and liver transplant. Furthermore, I was underweight. That morning I had weighed in at 101 (and that was with my heavy terry cloth robe and slippers). I was probably less than 100 pounds. Dr. Wood said that if I could not eat more they would have to put a feeding tube down my throat. The nurses would be keeping a daily calorie count on me I was informed. They wanted me to consume 3000 calories a day! I looked at the doctors with dismay. Who could consume 3000 calories a day? Were they trying to punish me?

That night after trying to eat dinner, I heard a distant ringing of bells down the hall. As the ringing got closer, I elevated the head of my bed and tried to look into the hall. Bursting through my door came an elf in a red and white striped body suit with a Santa's cap. It was my friend Marilyn Bullard from Pearland. She was carrying jingle bells, a miniature Christmas tree, and a box.

"Ho! Ho! Ho!" she kept shouting.

Laughing and jabbering Marilyn placed the tree on a table in the corner of my room and began to decorate it. I began clapping my hands and whooping. Curious nurses were peering into my room to see what the commotion was about. For the first time in months I laughed with complete glee. Marilyn was outrageously fun and I loved that in a person. First she strung the lights, then hung miniature ornaments and garland. All the while, she shared anecdotal "Pearland" stories. It was a magical moment when she plugged the lights in. Late that night when my nurse came by to check on me, she asked if I wanted the tree lights turned off.

"No," I dreamily replied. "Leave them on. I want to feel Christmas."

The next day, as doctors began gathering for morning rounds, I noticed a man with gray hair whom I hadn't met yet peering curiously into my room. Soon he led the transplant team through my door. Where were Doctors Wood and Ozaki?

"I'm Steve Katz. Do you remember me?"

What? This was a surprise! It had been at least twenty years since I last saw Steve. I had been looking for someone with dark hair. Oh well, last time he saw me, the sclerae of my eyes were white. Carefully scrutinizing his features, I recalled the face. Having someone whom I'd grown up with on the island help take care of me evoked surprisingly powerful feelings of peace. I reached for his hand. He was more than a doctor. He was a fellow Galvestonian!

By the end of the week Dr. Wood stopped by to tell me he and the other doctors had made a decision regarding my medications (most of which they had already changed). He would be taking me off the FK506. After allowing it to get out of my system, they would restart me on cyclosporin. I stared at him and the coordinator, Linda Baumann, with disbelief.

"What if I reject?" I finally asked.

Linda Baumann said I'd be getting a new liver anyway. As they left I thought I detected a hint of a mischievous smile from Dr. Wood. That man is crazy, I thought.

Later that evening during rounds Dr. Wood stood at the foot of my bed and picked up a stuffed toy dog my husband had bought for me in Dallas. It was a cute little Dalmatian puppy with a red and green silken cord around its neck.

"What's its name?" Dr. Wood asked.

After a thoughtful moment I answered, "Feisty".

Dr. Wood smiled understandingly. He sat the dog on its hind legs and commanded, "sit". When it fell on its side he said, "roll over". In spite of myself, I had to smile. He was like a kid and pretty funny after all.

"Listen, Dr. Wood. About this third transplant; I'm really nervous," I admitted.

"Yeah, me too," he said.

"What! You're the doctor!" I reminded him.

I looked around and the rest of the team was looking at the ceiling or the floor trying to subdue their smiles. But Linda Baumann said, "Don't listen to him. He's always that way before a transplant. He'll be fine in the operating room."

"Really?" It was more of a statement than a question. These people are so odd! They are all loco.

The following day my Pearland neighbors, Shirley and Debbie, came to visit. We had raised our children in the same neighborhood. Even though my husband and I moved to another subdivision a couple of years earlier, I never felt the love for my new neighbors like I had for Shirley and Debbie. They “got” me. Now, here they were offering moral support and holiday greetings. They had brought a huge red poinsettia that added to my Christmas décor.

Strangely enough, over the next week I began feeling stronger every day. The fever was gone and I could breathe better. This new medicine treatment seemed to agree with me. I had been sick and miserable for so long, however, that I acknowledged this improvement with guarded optimism. Dr. Wood must know what he's doing. What a funny guy, though. I had a hard time figuring him out.

Now that I was feeling stronger, I could get out of bed and practice walking again. I knew it was imperative that I regain as much strength as possible before my next transplant. Besides, I wanted to surprise my doctors. They had never seen me walk. At first I could only go as far as the sink next to my bed. Soon I could ambulate to the door. I would stand in the doorway and look down the hall. Summoning strength and courage, I pushed my IV pole in one hand while lugging my bile bag in the other and finally ventured outside my room. The steroids had made my vision blurry, but I could still see where I was going. With determination, I fixed my eyes on the end of the hall and took off. Halfway there my eyes fell upon the most attractive man walking in my direction at a rapid pace. I squinted to bring him into focus. When I was at close range I realized with surprise that it was Dr. Wood! I was momentarily speechless. When did he get cute, I wondered? Staring at him in confusion I remarked, "Look, I can walk."

How very odd this incident was. Maybe it's the steroids. They can distort vision. On the way back to my room I decided to stop at the nurses station and check out the dependability of my visual perceptions. Approaching one of the nurses I asked, "You know my surgeon, Dr. Wood?" She nodded.

"Yeah . . . well, he's pretty cute, huh?"

"Oh, Mrs. Kacher! You must be feeling better," she laughed.

Back in my room I pondered on my nurse's statement while waiting for the doctors to make evening rounds. Soon they were in my room. Dr. Wood walked right up to me demanding to see the tubing of my bile bag. I guess he noticed how long and awkward the tube was when I walked. Pretty pitiful sight I imagine. Disconnecting the tubing from the catheter in my side, he asked Marla, his assistant, to find him a new bile bag and connecting piece. In minutes, the tube was less than six inches and the bile bag could be taped to my side. Now I would have two free hands when I walked. I was so delighted, I wanted to hug him, but refrained. A memory from my Hermann evaluation leaped to mind. It was that of a button Dr. Wood was sporting on the lapel of his lab coat stating, "WOOD WORKS". Coming back to the present I glanced at the smiling faces on the rest of the team. One by one, I noted that they all looked good to me—beautiful people—strange never to have noticed that before now. Corny as it felt, I suddenly realized what had happened: I had fallen in love with my Hermann team.

The Fire Within

Thy words have darted hope into my soul

And comfort dawns upon me.

~Southern

Very often, high doses of immunosuppressants like cyclosporin make patients feel hyperactive. Sometimes when evening would come, I would feel so wired from my medicines that sleep seemed impossible. At those times I'd grab my IV pole and walk the halls until I'd feel too physically tired to take another step. I'd retreat back to my bed; the body exhausted, but the mind still racing.

"Geez!" I'd complain to my nurses, "I don't think I've had a good night's sleep since this transplant!"

Late one night while on a restless prowl, I met a young woman in the patient lounge. She was a kidney recipient who also experienced insomnia. We became friends and would sit and talk about everything from our incisions, to medications, to the nursing staff. The focus of our conversation frequently turned to the "bed side manner" of the nursing assistants on the night shift whose job it was to take vital signs and get our weight before the morning shift arrived. Most of the assistants would arrive at our rooms around 5:30 in the morning and take our vitals right before the laboratory technicians came for blood. One particular assistant, however, arrived promptly at 3:30 a.m., which was just about the time I managed to fall into a quasi-deep slumber. Both the squeaking of his tennis shoes and the clanking of an old scale he pushed from room to room heralded his coming. Flipping on the light switch he would cheerfully call out, "Good morning! Time to weigh and take vitals." Then he tried to chat with me as though we were having a tea party. Climbing onto the scale, I tried to tune him out so that I could flop back into bed and recapture my sleepy state while he took my blood pressure. By the time he left, his incessant chattering had fully awakened me. Occasionally, if and when I was finally lucky enough to fall back asleep, it was time to have blood drawn! One morning I complained to my doctor friend, Steve Katz, explaining about the outrageous hour at which the orderly weighed us.

"And to make matters worse, Steve, this guy wants to make small talk while he works. Yes! Can you imagine? I'm in no mood to talk at that hour of the morning. Can you say something to the nurses, Steve? Somebody needs to tell him that I'll chat after the 'blood letting'—not before."

Steve smiled in the entertained, easygoing way I had come to recognize. Just the same it mollified me to tell him my grievances. Since I had been at Hermann, Steve would drop by several times a day when he wasn't busy. Even though we hadn't been close while growing up, I soon felt he was like a good friend. I looked forward to his visits and felt that I could tell him anything regarding my hospital stay.

That very morning "Squeaky Shoes" came in yakking as usual.

"I do not talk this early," I firmly announced.

He looked surprised and carried out his duties in wounded silence. I felt bad; so bad that I took to the halls with my IV realizing there was no chance I could fall back asleep. At the end of the hall I found my kidney recipient friend watching T.V.

"Hi, can't sleep, huh?" I asked.

"Nope. Wanna walk?"

"Yes, might as well," I agreed.

No sooner had we turned the corner than we spotted THE SCALE. How I hated that clanky old scale. It had become the bane of my existence. Not only was it loud as it rolled from room to room, the very sight of it made me think of Dr. Ozaki and feeding tubes. Every day she would review my caloric intake and weight. If both didn't increase enough to suit her, she would urge me to eat a little more, all the while talking about the benefits of feeding tubes. Dr. Ozaki was determined to plump me out. Now the dieticians were sending me high calorie milk shakes between meals. I had gotten so paranoid about my weight that I would stuff the pockets of my heavy terrycloth robe with odds and ends to give me added ounces before stepping on the scale. After every meal I felt like a stuffed pig, but couldn't seem to climb above 103 pounds.

Pointing to the scale I told my friend, "I hate that thing."

Then it occurred to me that we were all alone with the scale and a storage area was right across the hall.

"Let's get rid of it! We can hide it across the hall," I laughed.

Walking to the storage room, she held open the door while I pushed the scale inside. Thanks to Dr. Wood, I now had a free hand and no longer had to contend with an IV pole and a bile bag. Nevertheless, the scale was difficult to navigate and I had to push it in a zigzag fashion to move it across the hall. In the process, the damn thing rattled so that I was certain someone would hear. Once inside the storage area, we let the door close behind us and pushed the scale to the back of the room. To make sure that it wasn't discovered too soon, we covered it with a sheet from a linen cart and shoved a few small boxes around its base. Carefully opening the door, we peered down the hall. It was clear. Smiling from ear to ear we walked back to her room.

"Maybe now we'll have some peaceful nights," my partner said.

"Right you are," I agreed.

Fatigue finally set in and I headed back to my room.

For the next several days we were awakened for our vitals only. Dr. Ozaki did remark one day as she was leaving the floor that the scale was missing and did I have any idea how much I weighed?

"I think I'm up to about 110," I boasted.

"That's good!" she told me.

I could tell she was impressed.

The doctors were planning to release me from the hospital soon. I was fairly stable and would be able to wait for my next liver at home. I only hoped that I would be released before they found the scale and realized I had exaggerated about my weight. For the next several days, I tried to eat everything on my plate and prayed that I would gain several more pounds. I'd hate to disappoint Dr. Ozaki.

One week before Christmas, Hermann's hepatologist, Dr. Monsour, permitted me to go home on an evening pass. Home! I had been away since late October. Whereas early last October when I was first permitted to go home, I was overcome by anxious excitement, this time I was reluctant. I had been a patient for so long that the hospital felt like home. Now I had a chance to get away and was actually afraid to leave my doctors and nurses.

Late afternoon, my husband and children arrived in the van. I didn't have to be back at the hospital until 9:00 p.m. I'll only be 35 minutes away from my doctors I kept reminding myself.

When we walked inside our house, the first thing I saw was a big Christmas tree, which was erected in the family room. Ernie and the boys had waited until I got home to decorate it.

Sitting on the couch I looked around the house in a daze. I felt as though I was looking through the eyes of a stranger. While the children decorated the tree, I kept thinking, this is a dream; it doesn't feel real. Finally, I got off the couch and hung some of my favorite ornaments. There, at the bottom of the ornament box were little Christmas figurines, holiday placemats, and stockings I had made when the children were still babies. Slowly, I hung each stocking over the fireplace and placed the figurines in their traditional places. The ritual of holiday decorating sparked a hunger in me and I wanted to explore the house. Going to the dining room I ran my hands over the china cabinet and grandma's dining room table. I went to the kitchen and placed the Christmas placemats on the breakfast island. Ernie and the kids made wassail.

All too soon, it was time to leave. Before I said good-bye to the children, I very carefully attempted to climb the stairs. Taking the banister with both hands, I pulled myself up the stairs, one at a time. Walking to my bedroom I stared at the bed. It looked so huge. The room looked big. The house looked enormous. It was difficult to believe that I once lived here.

When Steve stopped by my hospital room the next day he kindly asked, "How was it?" referring to my visit home. I found it hard to express my ambiguous feelings and instead told him, "You know, Steve, my life didn't turn out at all as I expected."

After a moment of quiet, he confessed, "Mine, neither. I always figured I be married with children by now."

Again we were silent. My mind went to Bobby, a young man I'd met in Dallas who had to have a 3rd liver transplant. He died just before I left for Hermann. Why did he have to die? He was only in his twenties.

I felt a hollowness in the pit of my being. It's not so easy to survive a 3rd liver transplant I conceded. I looked up at Steve. He was an honest man.

"Steve—this 3rd transplant? Do you think I'll make it?"

With a thoughtful look on his face he slowly removed his glasses and studied their structure.

Placing them back on, he looked directly into my eyes.

"Yes," he said with conviction. "I believe you can make it."

Along the journey my spiritual energy had waxed and waned. This flicker of hope which had been nurtured by family, friends, and medical professionals, once again burst to life and spread throughout, bolstering a burning passion to continue the struggle.

I can make it, I repeated to myself. Yes . . . I can make it.

Epilogue:

Toronto, Canada

July 31, 1993: It was a hot day in July, but that didn't stop tourists from sauntering through the streets of Chinatown in Toronto. Individuals, couples, and families could be observed window-shopping or haggling with street vendors. Bold, spicy smells and a myriad of vivid colors greeted vacationers at every corner. A man toting a camera accompanied his family while pushing through the eclectic crowd of sightseers until they approached a van. After carefully placing recently selected souvenirs in the back of the vehicle, they boarded and headed north towards Casa Loma castle, a spectacular 98-room manor which had been restored and opened to the public. Castle visitors followed tourist-specific hallways that connected ornate living quarters to obscure dim rooms. The family, who had recently driven from Chinatown, came upon one such room in which a steep, narrow stairwell beckoned.

"What's up there?" they asked a tourist exiting the stairs.

"A dungeon!" he exclaimed, "And it's seven flights up."

"Let's go." they unanimously agreed with gleeful anticipation.

Flight after flight they climbed, increasing their speed as they approached the top. In a burst of enthusiasm, the mother shot forward, bolting up the last several stairs. She turned about triumphantly showing the front of her T-shirt, which bore the words:

Twice Blessed

July 31, 1992

Lifting her arms in victory she cried out to her family, "I won!"

Character Synopsis: Summer 1998

In 1993, Ms. Kacher's liver support group, under the direction of Dr. Margaret Bridges and social worker, Mary Poarch, adopted the name of Lucky Livers. The group continues to meet once a month and includes liver transplant patients as well as those who suffer from a variety of liver disorders. The following is a synopsis of some of the original support group members:

Detna was released from Hermann Hospital during the spring of 1993. Her liver and biliary ducts were able to regenerate and she did not need a third liver transplant. She was able to return to the classroom as a college instructor the summer following her surgery. Today, Ms. Kacher teaches high school. This summer marks her 9th year post transplant. Her younger son, Michael is completing his second year of college, and her older son, John is a freshman in dental school.

Ruth is now 10-½ years post transplant. She suffered numerous complications, including hepatitis C, which she developed after a blood transfusion during her post-transplant hospital stay. The test that screens for hepatitis C was developed shortly after her release from Baylor Medical Center. When she is able, Ruth volunteers for LifeGift. Her ongoing struggle has been a source of inspiration for all her friends and loved ones. Ruth's only son is completing his second year of college.

Mary Lee is 11 years post transplant. She became completely independent of oxygen canisters 2 1/2 years after transplantation. Since her surgery, she has toured Europe, taught classes at the University of Houston, participated in archeological digs, and worked as a volunteer for LifeGift. Her future plans include opening an art studio at home.

Robert is presently 12 years post transplant. He and his wife, Kathy, live in the country where he works as a master gardener. He also keeps bees, makes honey, and fishes in his spare time. Robert is still convinced that organ recipients take on behavioral characteristics of their donors.

Melanie recently completed 11 years as a liver transplant patient. There is no evidence that her cancer has metastasized. In addition to raising four children, Melanie rides horses, has participated with health fairs for LifeGift, and worked as a veterinary assistant. Her youngest child, who was an infant when Melanie was first diagnosed with liver cancer, recently completed seventh grade.

Charlotte is also 11 years post transplant. She and her husband are enjoying their grandchildren. Since transplantation, Charlotte has attended continuing education classes at Rice University. Recently, after bouts of elevated liver enzymes and fatigue, Charlotte's physicians determined that her autoimmune disease, PBC, had returned.

Linda Poe is celebrating her 16th year as a liver transplant patient. She is the sole surviving patient from Hermann Hospital's early attempts at liver transplantation. Linda's two daughters are both in college. Besides being a mother and wife, Linda works full time.

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