NTM Northwest Support

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

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#1 2016-06-19 14:05:53

Nancyr
Administrator
Registered: 2016-05-30
Posts: 37

Palms Springs NTM meeting December 2, 2013

NOTES FROM
THE PALM SPRINGS AREA NTM (MAC) SUPPORT GROUP
Dec. 2, 2013


Attendance

There was a large group of 17 attendees for our first meeting of the season, and the second meeting of the group. (The first meeting was Feb. 2013, which consisted of mostly seasonal people.). The seasonal people who will arrive starting in January, so it is expected our numbers will increase at the next few meetings. Obviously there is a need for a support group in this area.

Nature of the Group

Many have been dealing with NTM for many years, while others have been newly diagnosed. Many expressed they were feeling very much alone with this condition and were happy to have found like-minded people.  A contact list for communication among the members has been assembled and distributed.

Issues

***It is important to remember that this condition manifests itself differently in different patients. It is incorrect to assume you will have the same symptoms, progression and/or side effects as someone else.  You may never progress to the point of some people. But it is important to know there are options if needed.***


One member was newly diagnosed and knows very little about the condition. Her friend and also her significant other attended the meeting, all wanting to learn more.  She is fortunate to have such support and is now grateful for the others in the group.

Another patient was diagnosed with m.simeaa, a more unusual strain of NTM. He is experiencing extreme weight loss and fatigue. He was fortunate to have found an infectious disease physician who is knowledgeable. His pulmonary specialist, Dr. B. recently left the desert to practice Riverside about 1 hr. 30 minutes distance, He has since seen Dr. Thomas, another physician in the practice who trained at National Jewish seems to know about NTM.  At the suggestion of his local ID physician, he has started the process of going out to National Jewish and has scheduled an appointment in early January.

Another group member on antibiotics is tired and nauseous. She is unsure if the fatigue is from the infection or the antibiotics.

Someone else has hearing loss from IV Amikacin.

Some members in this group used the term “remission” when discussing their disease. It is unclear whether it refers to lack of symptoms, clearing of the bacteria or something else. In my experience, this is not a term typically associated with NTM, perhaps because it is not cleared out in most cases, but rather managed.

Others experienced improvement in their CT scans/and/or cultures, some after being on antibiotics for a long period of time indicating there is hope for all of us.

One patient had a history of a diagnosis of pneumonia. She was eventually diagnosed with MAC and had susceptibility testing, which found the three drugs; ethambutol, rifampin and azithromycin were the antibiotics that would work. She tolerated the meds well but turns out those drugs did not clear out enough of the bacteria. National Jewish recommended surgery of the right middle lobe. After a great deal of deliberation, she decided to have the VATS surgery with Dr. John Mitchell of U. of Colorado Medical Center. He is considered one of the national experts in this less invasive procedure. She is uses the Acapella for airway clearance every day and is feeling pretty well since the surgery.

Misdiagnosis occurs too often. One of our members was told she had cancer and went through unnecessary slung urgery before her correct diagnosis of NTM. Others said their doctor thought she might have AIDS, but couldn’t understand how this could be possible considering she did not do anything to warrant that diagnosis.

One of the women indicated she has been in denial but after coming to the meeting, she has been energized to become more of an advocate for herself.


Gastroesophageal Reflux Disease (GERD, Acid Reflux)

It has been found that there is a correlation between GERD & NTM. When lying flat, especially when sleeping at night, stomach contents can aspirate into the lungs causing possible progression of the bacteria. It is suggested to sleep on your back, elevating the upper body on a motorized bed, or with a wedge and pillows. Be sure the legs are elevated with pillows under the knees to prevent sliding off the wedge. Proton Pump Inhibitors (PPI’s such as Nexium, Prilosec, Prevacid), while relieving symptoms, can actually provide an environment of reduced acid, something in which our resistant bugs thrive and grow.)

Oral Antibiotics

Many mild infections are monitored with CT scans and sputum cultures. If warranted, NTM is treated with multiple antibiotics. The most popular treatment for MAC is the three drug cocktail o of ethambutol, rifampin and azithromycin or similar drugs in the same drug families. Other strains are treated with at least two antibiotics. It has been found that a single antibiotic is ineffective in killing the bacteria, and extended use of the singe antibiotic can cause resistance to that drug if needed for future treatment.


Infusion
A few in the group have been on infusions and/or are presently on infusion, most under the supervision of Dr. Younes. One of the members is on continuous infusion of Doripenem, which is refilled every 24 hours. It has been found effective for treating MAC but ineffective for some of the more resistant strains of m. abscessus, in which National Jewish recommends Inipenem, infused twice daily for 6-8 weeks, depending on the specific case.

We will receive information about a special PICC line cover, which we will share when received.

Decisions, Decisions

The question arose as to who should manage your meds if you are seeing both pulmonary and infectious disease as well as other docs. We concluded that selecting the lead doctor should be based on your assessment of the doctor’s knowledge, your comfort level as well as who responds in the most timely manner.



National Jewish Health in Denver, CO

Because of their complex cases, a number of patients have had recommendations from their local physicians to go National Jewish. The doctors recognize that NJH have a number of specialists in their Infectious Disease department who have extensive expertise in our condition. The NJH docs will work with your local doc in managing treatment.

Bronchiectasis


Bronchiectasis is a common condition among many of us. Some did not understand exactly what it is. A diagram was distributed showing healthy lungs vs. bronchiectasis, which is a collection of mucous lining the airways causing it to narrow. Common symptoms include difficulty breathing and coughing.
   




Airway Clearance/Respiratory Therapy

Mucous can be trapped in the lugs and airways and it is important to try to clear it out to prevent further infection. Many patients are instructed to clear airways even though they do not feel the presence of mucous.


Airway Clearance Devices

AerobiKa: Newest device recently recommended by National Jewish. Similar to Acapella Choice.

http://www.monaghanmed.com/products/cli … apy-system

Acapella Choice

http://www.nationaljewish.org/healthinf … la-choice/



The Vest

http://www.thevest.com/products/

PT Cupping and Clapping

You would have to have someone at home do this exercise for you, or else have it done at  respiratory therapy.

http://www.youtube.com/watch?v=ErMTXJLE5es

Neil Med Sinus Rinse-For patients with sinus issues including postnasal drip

http://www.neilmed.com/usa/directions.php

Pulmonary Rehab at Eisenhower

This may be an excellent lead from Ted Harsham for many of us. I will contact Debbie Fuller to see if she would agree to be a guest speaker at one of our meetings. Here is the information from Ted.

“I think that Desert NTM support group members might be interested in the pulmonary rehab program at the Renker Wellness Center at Eisenhower Med Center. It's 8 weeks of comprehensive education and exercise paced to the needs of each individual.

There is a brief overview at:
http://www.emc.org/body.cfm?id=168

I attended the program in early 2013 and by the 8th week my fitness and endurance had increased dramatically.  The education classes were very useful, covering topics such as daily activities, pulmonary physiology and disease, medications, nutrition, oxygen use, travel, stress management, and more. Debbie Fuller, RN and Jenny Armstrong, Therapist, both of who are outstanding and compassionate, run the program. The cardiac rehab team of nurses and therapists supports them. A copy of a typical schedule is attached.

I spoke with Debbie Fuller, who said she'd like to be informed about coming NTM support group meetings and would welcome receiving any NTM information that you feel would be useful. Anyone who is interested in the pulmonary rehab program can contact her at:”

   Debra Fuller, RN
   760.773.2031
   dfuller@emc.org


Submitted by Debbie Breslawsky
NTM (MAC) Support Group Leader, Palm Springs and Desert Cities
(also co leader of the Metro NY group)
12/13/13

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