NTM Northwest Support

A Pacific Northwest support group for sufferers of Nontuberculous Mycobacterial (NTM) Infections and Bronchiectasis

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#1 2016-12-11 11:25:28

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 177

Palm Springs NTM Meeting Dec 6,2016

NOTES FROM THE NTM (MAC) SUPPORT GROUP
MEETING IN PALM SPRINGS & DESERT CITIES
DECEMBER 6, 2016

Patient Stories

Debbie shared her patient story that was published in the ATS “Patient Voices 5”.  One of our members suggested that, as many of us who are so inclined should write their stories so that others could read the experiences of patients. If you are inclined to share your story, please send to me at breslaw1@gmail.com . I can compile them and circulate, and/or perhaps share with NTM Information and Research to post on their website. The consensus among the members is that such a project could be invaluable to NTM patients in relating to others, what measures worked for other patients and knowing they are not alone. You do not have to be part of the Palm Springs group to participate.

Member Updates 

Two new members joined us. One was the sister of an NTM patient who would like to learn about our condition. Her sister lives out of the area. She acts as her sister’s advocate. The sister is on the triple antibiotic cocktail (ethambutol, azithromycin, rifampin) for MAC.

Another new member lives a distance from the desert. An urgent care doctor, who identified pneumonia and thought that NTM may be the cause, diagnosed her 2 years ago. A follow-up CT scan 6 months later showed progression, and a bronchoscopy showed MAC. She was asymptomatic. Two different doctors gave her conflicting advice as to how often to take the meds. She is in the process of evaluating her medical care. We discussed the importance of having confidence in our providers.

Many in our group have been diagnosed with silent GERD. One member suggested blocks under the head of the bed to sleep inclined. She awakens each morning sleeping flat, which is not the best position to prevent the possible aspiration from GERD. To prevent slipping, it is recommended to place a pillow under the knees. The best recommendation for sleeping inclined is the motorized bed. The head of the bed should be inclined 25-30 degrees. The foot of the bed should also be inclined somewhat. When the body is in a “V” position, slipping should not occur. Another member with GERD mentioned the steps she has taken to prevent aspiration. She eats dinner earlier and has eliminated chocolate and all carbonated beverages. Since, she feels no symptoms.

A few in our group have an autoimmune condition called Sjogren’s Syndrome. This causes dry mouth and eyes. It is suggested to use chewing gum a few times a day, and use Biotene to keep the mouth moist. Biotene comes in liquid, gel and spray. Mouthwash is not recommended because the alcohol is a drying agent. There are many OTC eye drops available to help dry eyes such as TheraTears.  Do not buy small bottles...use only individual doses without preservatives. Many folks use them only at night when eyes get most dry.

Definition:  Sjogren’s Syndrome is a chronic disorder of the immune system-a long term autoimmune disease- in which the patient’s white blood cells attack the saliva and tear glands, leading to dry mouth and eyes because the body’s tear and saliva production is reduced.

An Essential Heart-Surgery Device Poses a Rare but Deadly NTM Risk

In the past few months, there has been news coverage about a few open heart bypass surgery patients being infected with NTM by a piece of medical equipment, a heater/cooler device. This has been reported in hospitals in Pennsylvania, Iowa and South Carolina as well as in other states. The FDA and CDC have issued advisories calling on hospitals using this Stockert 3T device to develop a system for alerting patients and healthcare providers in the event of an outbreak. The dilemma is that the machines are helpful for the majority of cardiac patients, most of whom can tolerate the exposure to NTM. I include this link to the write-up to alert patients to evaluate carefully before undergoing such surgery. Ask questions. What machine is being used? How many cases have been identified in your hospital? It is a sad way to gain publicity for NTM.

http://www.consumerreports.org/doctors- … t-surgery/

VATS Surgery

Cynthia was nervous with the prospect of having lung surgery, recommended by her National Jewish physician in 2011. She made a request to speak with others who had had such surgery before making her decision. After sending out an email request, she received about 30 responses, and based on the feedback, she ultimately decided to go forward with the surgery.

VATS (Video Assisted Thoracic Surgery) is a specialized technique. She opted to use Dr. John Mitchell of University of Colorado Medical Center with affiliation with National Jewish Health. Dr. Mitchell is one of the experts in this procedure, and deals mostly with NTM patients. Three incisions are made, one for a camera, one for the surgical device and a third for a drainage tube. Before the surgery, Cynthia saw her NJH doctor for the first pre op clearance, and then saw Dr. Mitchell’s team for the surgical pre-op.

One lobe was removed, which contained a great deal of NTM. It had been non- functioning, so she did not feel any shortness of breath afterward. This surgery usually takes less than 45 minutes, but her procedure lasted 4 hours because of lots of puss and adhesions that had to be removed. She said her life was given back to her as a result of the surgery. She was MAC free for 5 years, and just recently, has had some progression. The theory of surgery is not necessarily to cure NTM, but to greatly reduce the numbers so that the antibiotics can work more effectively on the remainder. In Cynthia’s case, her symptoms were greatly reduced.




Patient Centered Outcome Research Institute (PCORI)
http://www.pcori.org/about-us/why-pcori-was-created

PCORI is a nationally funded institute recently created to bring the patient voice into the research design process. They fund and oversee research shaped by patients as well as clinicians and researchers with the end goal of improving outcomes for patients with difficult, burdensome chronic illness.  Cynthia, a member of our group, is one of several patients on the team for two separate PCORI funded studies. Key researchers on both studies were Dr. Kevin Winthrop and his associate, Dr. Emily Henkle, both of Oregon Health and Science University.  The COPD Foundation and NTM Info & Research were also involved as well as many prominent NTM medical professionals.

The goal of the first study is to establish a “road map” to guide research addressing patient concerns of those suffering from bronchiectasis, a condition very common among NTM patients.  A questionnaire was circulated nationally and input from over 400 patients led to the structure of these research priorities:

1.    Improve treatment of bronchiectasis.
2.    Prevent and treat exacerbations (flare ups) and associated infections.
3.    Improve health-related quality of life
4.    Apply measures of disease severity (how sick people are).
5.    Identify predictors of poor prognosis
6.    Understand impact of underlying conditions.
7.    Patient centered clinical trial outcomes.

One of the outcomes of this group was the evolution of a new website, www.bronchandntm360social.org . This group is affiliated with our national association, NTM Information and Research, www.ntminfo.org . That study concludes this year.

The second study looks at the comparative effectiveness and safety of inhaled corticosteroids and antimicrobials for non-CF (Cystic Fibrosis) bronchiectasis patients.  Again, this is a condition often accompanying NTM.  Dr. Kevin Winthrop was again lead investigator and the two research sites are OHSU and the University of Alabama at Birmingham. The three year study began in 2015.

The group is in the process of making application to use historical Medicare data for computerized analysis.  There is some suspicion based on anecdotal observations that the long term use of inhaled corticosteroids may lead to an increase in exacerbations, hospitalizations and the acquisition of NTM while the use of antibiotics may lead to a decrease.  Which ones actually help?  Which ones hurt?  I am sure I can speak for many of us in saying that we look forward to the outcome of these studies.

A special thank you to Cynthia for her presentations to the group about VATS surgery and PCORI. Her information was invaluable.


Next Meetings

Monday, January 9- Guest Speaker, MacKensie Caty, Hill Rom Vest Company. She will discuss the benefits of using a Vest for airway clearance, who might qualify, and will answer any questions you may have.

Monday, February 13-Dr. Ed Chan, renowned researcher in NTM at National Jewish Health. I have heard him speak on a number of occasions. This is an excellent opportunity to learn about what may be available for us in the future.

My sincere wishes for a happy holiday season. Please remember to pace yourselves and rest when needed.

Debbie Breslawsky
Founder and group leader,
Palm Springs and Desert Cities, NTM Support Group

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