Key points from NYU NTM Patient Education Seminar, QOL Segment presented by Betsy Glaeser
Posted on April 27, 2016 |
This blog post was written by Katie Keating, RN, MS (patient advocate).
The impact of a chronic illness affects each and every aspect of your life on a daily basis. More research is now being done on how NTM affects the quality of our lives. NYU Medical Center recently held a patient conference and I would like to summarize the key points of a patient speaker, Betsy Glaeser, Leader, NY NTM Support Group.
- "She always looked good"- most people look at us and feel that we are making up a story, that we may be lazy, depressed since we are unable to work full time, and or keep up with our plans, etc. Some view us as whiners since others cannot see visible signs of our illness.
Very few people truly understand our disorder; it is like a see-saw, symptoms constantly fluctuating with variables outside of our control such as the humidity, rapid weather changes, pollution, etc.
- Overload of information on the website for this rare disease confuses many, resulting in great angst. The "T'' in NTM frightens many patients and families; they fear that we are contagious with TB.
- Drug therapy- 3 antibiotics are taken simultaneously for the major type of NTM with many adverse effects. Most patients have a fear of side effects throughout the course of treatment. Some side effects of the current treatments include permanent, and life-altering issues, which may include hearing loss, vestibular imbalances, optic nerve issues, neuropathies, gastrointestinal issues and others.
- Finding the right doctor, pulmonary rehabilitation therapists with experience and empathy is often a challenge. The time involved in MD visits, airway clearance, labs, physical therapy may curtail any free time when we might have energy to do other activities of daily living.
The two primary symptoms are fatigue and cough which can totally change your everyday ability to function.
- Many changes in level of daily personal activity are due to fatigue. We cannot push through the fatigue at times. Many have the NTM "fog" which affects our ability to concentrate, get things accomplished. We must learn how to accept it and work around it.
- Coughing in public is a nightmare for many. Many decide not to go to public places, such as movies, theatre, buses in fear of having a coughing fit and having to leave. Social isolation leads to angst and depression. Feelings of aloneness and not being understood are very difficult to accept.
Cough can interrupt sleep. Many have greater sleep requirements; many must sleep upright on pillows. Daily treatment includes airway clearance with the acapella, flute, aerobika or vest, labs, MD visits, etc.
Many are unable to travel due to coughing bouts, fear of infection or being unable to keep the pace while traveling.
Life changing events:
Many patients stop working or modify their current job. Many patients give up the personal fulfillment and the monetary rewards of a career. This alone can be extremely depressing for those who have obtained advanced degrees and are at the height of their career when diagnosed with this disease. Being out of the workforce may affect a patient’s feeling of competence and self-esteem.
Financial impact is huge for many due to loss of income; living off disability funds with high copays for doctors, costs of drugs and other assistive therapies is very stressful.
We lose control of our lives, which can be extremely frustrating. Permanent elimination of this disease is not achievable at this time. Recurrence rate is 50% for NTM infections; bacterial and fungal infections, such as pseudomonas, staphococcal, or klebsiella occur frequently in addition to recurrent NTM infections.
We must make our health our new priority, find a new normal.
We must be strong and not let NTM win. A few patients have reset their new normal
Examples: one had gone back to school for a PhD in Art History, one had climbed mountains with a portable oxygen tank; one was able to attend her daughter’s wedding on a mountain with a portable oxygen tank.
Let us start today, by communicating suggestions, which we may have acquired along our personal journeys with NTM, which will enable a fellow patient to live life to their fullest, under the limitations, which we may have. We must force ourselves to make tentative plans with others to get out and do what we love when we are up to it. We must learn how to nourish our bodies better via better nutrition and exercise as much as possible. We must put one foot in front of the other, every morning, and go forward to the best of our ability.
There is now HOPE, light at the end of the tunnel since new drugs are now in the pipeline and more research is being conducted. A patient-reported outcome measure for NTM was developed recently and is now in the process of having its psychometric properties evaluated. If you are interested in helping with the evaluation, please contact Dr. Alexandra Quittner at AQuittner@miami.edu.
To review the other 7 lectures from the NYU Patient Conference, please see NYU Medical Center, Patient Symposium page here or visit www.ntminfo.org, the website of NTM Info & Research, who supported the video project.