Misdiagnosis



Response to questions for NTM / FDA Panel:

Submitted by Kathleen Keating

September 24, 2015

QUESTION # 1:

The 3 symptoms which I experience due to my condition which have the most significant impact on my life include the following:

My key two symptoms are fatigue and stamina. My day is based on personal energy available since my first NTM infection 14 years ago. NTM has affected my life by resulting in an ongoing roller coaster ride of ups and downs. My mind desires to do so much; however, my body is limited due to stamina deficits. My stamina is greatly affected by humidity and weather changes and other environmental factors.

Stamina issues impact every aspect of your life. I was a super energetic type A personality; I am now so limited on a daily basis. The fatigue can be so severe, debilitating - I was diagnosed when I was 40 y.o.; I felt as if I was 80. I envied an 80 year old neighbor who was able to stay out until 10pm when I had to be in bed by 830pm due to exhaustion with a NTM infection. I felt robbed of half of my energy!

The outcome of my first NTM infection was bronchiolitis/ mild Bronchiectasis. The pattern which began after my first NTM infection is recurrent lung infections. When I overexert myself, I get sick with a gram negative lung infection. These gram negative infections are not cured with just a simple 10 day prescription of antibiotics. It can weeks to months to cure the infection, then time for your lungs to fully recover. I have had approximately 25 lung infections over the past 14 years.

A drug company recently advertised a drug stating that it will save you 1.3 days which makes me chuckle; I ask “How about 1.3 decades impacted?’.

NTM is a chronic invisible disorder which few understand. NTM patients do not loose our hair, a visible sign, like breast cancer patients. Patients often do not use any durable medical equipment in the early stages. Breast cancer patients go through a horrific nightmare of chemotherapy for 6 months, but most are then able to return to work and a normal lifestyle.

The differences in the seqeallae of NTM and Breast Cancer are significant. I was recently reminded me of the differences while attending a fundraiser for Breast Cancer. I realize that many do not survive breast cancer, but the majority do survive after 6 horrific months and can return to a normal lifestyle. I broke down crying in the restroom, (behind closed stall doors), realizing that I may never be able to return to my former lifestyle.

The lack of stamina has impacted my inability to work full time. I had to give up my career which was at its peak. Self worth is diminished with loss of ability to continue career goals/path/ dreams. Since NTM is an invisible disorder, it is difficult for many to understand our work limitations. Hence, giving up my career has ruined my financial goals since I was diagnosed at a young age. Foregone opportunities, lost retirement dollars , economic stress exists.

I am very sensitive to high temperatures, dry air, heating systems. I am also extremely sensitive to perfume of other colleagues, strangers. Dry heat and poor ventilation systems cause me to feel fatigue, and flare up to a point of being unable to function. . Flare ups suddenly sneak up on me with out warning. These factors contribute to the inability to work in an office environment or to set up a meeting in an office where you do not have control over the venue.

Unpredictability of planning due to effects of abrupt changes in humidity, extreme changes in temperature, either hot or cold also contributes to being unable to commit to work projects.

I cannot even commit to volunteering since they may cancel due to not feeling well, a re-occurrence or a flare up. Many NTM patients were forced into early retirement without a warning which is different other chronic illnesses. Many patients are on disability due to infection re-occurrence statistics, stamina levels and fatigue.

Independence may change to dependence in some areas of our lives which is extremely difficult to accept for a type A woman. Major psychosocial adjustments need to be made. Most family members do not understand our stamina issues.

Stamina to deal with basic activities of daily living of self/ children/ family is greatly affected. It is hard for a young child to comprehend that her mom just does not have the energy to do simple tasks. Stamina symptoms are similar/ overlap with CFS.

Lack of available chronic disease counselors, MSW, Psychologists led me to write a course on dealing with Invisible Chronic Disorders for middle aged patients.

Being a patient often is a relentless full time job/ with a HIGH TREATMENT BURDEN. Everyday is based on our energy management; I plan out necessary phone calls when energy is at its peak, usually in the morning. Synopsis of a Day in the Life of a Patient

• MD appointments,

• Smart vest, acappella or flute is used 15 minutes for chest/ airway clearance every a.m., every p.m., (outpatient pulmonary rehab as needed).

• nasal wash daily

• meds side effects , daily mucinex

• nebulizers/ proper use of nebulizers, cleaning of nebulizers

• pharmacist phone inquiries, insurance company phone calls

• labs as needed

• Dietary changes- no cheese, dairy between antibiotics, increased protein, need for probiotics, acid reflux. Watch foods which may increase sputum production.

• Bottle water only ,( Poland Spring) , no tap water in restaurants, boil water at home for 10 minutes

• Patients often cancel 50% of all personal plans due to lack of stamina which may lead to social isolation and depression. Many of our NTM support group members refer to our stamina issues as the “NTM fog”.

We are constantly in and out of remission; my toughest months are August with the humidity and February with the cold/ flu season. I am unable to truly enjoy the summer months, barbeques, activities due to the humidity- stuck inside in an air conditioning room which is not where I would prefer to be. Quality of life is affected dramatically for throughout the entire year.

Fatigue gets worse over time with each additional pneumonia due to inflammation. NTM is a chronic progressive degenerative disorder and it’s the emotional toll of a chronic illness takes it toll over time.

SYMPTOM #3.) Coughing and increased expectoration of sputum.

• Coughing- limiting factor, unwilling to bother other people when they have coughing fits.

• Clearing of the throat / sputum production where it affects me speaking to people in the public setting. Coughing is often accompanied by shortness of breath upon exertion. I have become unconscious that I am continuously expectorating sputum into a tissue now since it has become a part of my everyday life. Years ago, I would walk away to cough into a tissue; however, the frequency is much greater now and I don’t always walk away- this is often quite embarrassing for some. Outsiders worry that you are contagious.

QUESTION #2. Are there specific activities that are important to you but you cannot do at all or as fully as you would like because of your condition?

NTM patients have so many lifestyle modifications, not taking showers, is my greatest envy of others! Imagine, not taking a shower every morning and basing every day plans on how much energy you have!!!

Additionally, we must be cognizant of the limitations / examples listed below on a daily basis in an attempt not to get sick:

• No or little energy for old passions such as skiing, dancing

• Walking/ running/exercising- only when you have the stamina.

• What type of water we select to drink , no tap water at restaurants

• Cautious of water pick in DMD offices water filters

• Cautious of soda machines , veggie mist in supermarkets

• No perfumes, planting

• Terrified of mold

• No hot tubs, indoor pools, Jacuzzis

• Hardwood floors, radiator heat. Baseboard or radiator heat is recommended, not forced air which is most prevalent

• Constantly concerned with all filters, faucets, heating systems, piping, and humidifiers

• No fireplaces

• No barbeque pits

• No incense in church

• No movies, nor crowded places such as trains, airplanes, theatres, cruise etc in fear of getting an upper respiratory infection.

• Fear of traveling , limited choice of Green hotels

• No visitation to hospitals, nursing homes, other healthcare settings. - fear of colds/ pneumonia

How do the symptoms and their negative impacts affect your daily life on the best days?

Truthfully, stamina is an everyday issue. I utilize energy management tips learned at National Jewish. I plan daily activities. When I plan do something during the day, I often am unable to do anything in the evening.

I attempt to be as productive as possible on the good days to accomplish activities of daily living, instrumental activities of daily living to compensate for upcoming days when I may be able to accomplish little.

How do the symptoms and their negative impacts affect your daily life on the worst days?

Fatigue leads to lack of appetite and an inability to do activities of daily living i.e. – cooking, dishes, laundry, shopping. When not feeling well, I must just rest and let time pass before I feel better. Daily bath / hygiene may be postponed in order to have energy to make phone calls to MD or Rx; a quick sponge bath may happen if energy permits.

• Example of severe fatigue: Feeling a sudden flare up while on line at supermarket and having to leave the grocery basket which you spent 30 minutes shopping for, without checking out with cashier. I felt unable to wait the extra 5-10 minutes, felt completely exhausted several times in this scenario.

• Exercise is way out of the question on these days. Not many people can comprehend what you are experiencing; some label you depressed when you know you are not.

I am, as they say literally, “under the weather”. Rainy, humid days can totally change my productivity.

Resting all day impacts your ability to sleep well at night- a. vicious cycle. This leads to greater social isolation and angst.

#3. How has your condition and its symptoms changed over time?

do you symptoms come and go?

If so, do you know of anything that makes your symptoms worse?

NTM is a chronic progressive degenerative disorder .Fatigue gets worse over time with each additional pneumonia/ inflammation. Weather, non compliance with recommendations, and overexertion make symptoms worse. The emotional toll of a chronic illness takes it toll over time, the reality that this is not going away and that we must continue to accept our “new normal”.

Do you know of anything that makes your symptoms better? Being compliant with all of the recommendations listed by the research centers.

It is often difficult to be compliant with some variables which are out of your control, i.e., weather, environs outside of your control.

#4. What worries me the most about my condition?

• More infections inflammation, worsening of Bronchiectasis, bronchiolitis.

I deferred a Cat Scan since I developed atypical breast cells last year; scientists are now seeing a lot more cancers from excessive CT scans 10 years ago.

• Less effective antibiotics for patients taking so many antibiotics over the past decade and dwindling treatment options.

• Stomach issues which end up being an issue and a cause of death for many long term NTM patients.

• Financial hardship due to high co pays, meds, medical expenses. Medical expenses add up even for those w/ good insurance due to high co pays.

• Increased limitations for family, decreased ability for activities

• Unable to “be there” for my teenage daughter

• Need for portable oxygen

• Inability to deal with frustrations as time passes due to lack of cure for NTM tired of living with such limitations. It is hard to a Type A to accepting assistance at times/ fear of dependency; it does not become easier over time.

I never smoked nor worked in neither a coal mine nor other unhealthy behavior- I took a shower at 39 which changed my life forever.

My Wish list:

Improve infrastructure, diagnostics, and models of care / clinical pathways. Coordinate more comprehensive, less fragmented, cost effective care.

Continue to work on collaborating efforts of the key research centers instead of spinning/ re-inventing wheels.

Pharmaceutical companies to produce new antibiotics for NTM and other gram negative infections.

Develop a patient outcome measures checklist and share this information with physicians so they may treat the patient biopsychosocially.

Include more patient involvement, assist support groups. We need to improve the quality of life for patients NOW and not in another 20- years!

We hope to get more funding for research so that we may have HOPE and to see the light at the end of the tunnel!

Thank you,

Kathleen Keating, RN, MHA, CALA

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