NTM Northwest Support

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

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#1 2017-03-20 18:52:02

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 178

Palm Springs NTM Meeting March 13, 2017

NTM Meeting Notes
Palm Springs & Desert Cities Support Group Meeting
March 13, 2017


New Members

We welcomed two new members and their families. One was shocked to learn she was diagnosed with this after being seemingly healthy all her life.  Both spent a good deal of time near the ocean and one has enjoyed gardening as a hobby. Both were also amazed about most doctors not knowing too much about NTM, and one went through a great deal of testing before being accurately diagnosed, She was told by her cardiologist to exercise and lose weight. Now that she has been put on the antibiotic regimen, she is feeling better. This is sounding all too familiar.

Our other new member felt her lung issues began after a knee surgery, after which she developed blood clots, pneumonia and a bad cough. Although surgery not being a know cause of NTM, perhaps her immune system was altered in some way. Her diagnosis is m. fortuitum, a less common type of NTM.

GERD-Gastro Escopheal Reflux Disease

GERD is a recurring topic at our meetings. An association between GERD and NTM is suspected. Taking proton pump inhibitors (PPI’s) such as Nexium, Prevacid, etc.) is a double- edged sword. On one hand, it relieves the symptoms of GERD (aka reflux) by decreasing the acid in ones GI system. By reducing the acid, the NTM bacteria have a greater chance of proliferating. The doctors at National Jewish prescribe PPI’s with caution, to those who are in serious need, possibly risking esophageal disease.

One of our group members has a twin sister with lung disease and both experience GERD. When trying to remove their PPI’s, both found they were unable to stay off for any period of time and had to resume. One person in our group developed jaw pain from her PPI, which she said is a side effect. If you can get relief from Tums (an antacid, not a PPI), that would be preferable.

Some people have found relief from apple cider vinegar, digestive enzymes (Digest More-found in health food stores or on line). It was suggested to take digestive enzymes before eating for maximum effectiveness.

Cost of Medications

It is helpful to shop around for medications. One of our members learned that the Walgreens on the Eisenhower Medical Center Campus in Rancho Mirage was considerably less expensive than other pharmacies, including the neighborhood Walgreens. Perhaps the same holds true for other pharmacies in hospitals across the country. For hypertonic saline in the Coachella Valley, Ralph’s (supermarket) pharmacy (owned by Kroger) is the most reasonable, about $18 for 60 cartridges.

Nebulizer/Compressor

These terms have been confusing for some.  Many companies refer to their airway compressors as nebulizers or nebulizer machines.

Image of Nebulizers: http://justnebulizers.com/pari-lc-reusa … -save.html

Image of Aerosol Compressor (there are many types):
This is the one I recently ordered for travel and will plan to use it on a daily basis when on the east coast. (My research led me to this site, which was the lowest cost I could find for this particular model.)

http://www.directhomemedical.com/47F35- … r-kit.html

The nebulizer attaches to the compressor with tubing. The AerobiKa, a hand held airway clearance device can be attached to the nebulizer cup by removing the mouthpiece, and attaching the AerobiKa to that opening. By using the AerobiKa with the nebulizer/compressor, you would be getting a double treatment when using saline or any other prescribed medication in the nebulizer.

An interesting observation comparing my portable nebulizer with my large tabletop.

The beginning of March, I received the Pari Trek S mini nebulizer/compressor. The basic package comes with the standard power cord, as well as a cord that plugs into a cigarette lighter. They also sell a battery for it, but I chose not to purchase it, because the battery is more expensive than the unit itself (about $90) and I couldn’t see the application in my case.  I use it in conjunction with my vest, which needs to be plugged in, so there would be an outlet for the Trek. When I used the Pari Trek for the first time, wasn’t sure if I was producing the same amount of secretions as with my large tabletop (Pulmo Aide by DeVilbiss, purchased 4 years ago) . I conducted a 10-day test for myself, using the mini every other day, alternating with the tabletop. I marked my paper cup over the trial to see if there were any differences.

Results of my trial :

I alternated compressors during the 10 days and used the same nebulizer cup and tubing. Each day, I marked the same clear plastic cup with a sharpie, black lines when using the large tabletop, and red lines using the Pari mini. The collection was started at 7:30 am each day and ran for 10 minutes. The levels were similar using both. On a few days, I was able to bring up more secretions with the mini. It will not be necessary for me to purchase another compressor when going to my CT house. I now feel comfortable that the mini will do the job. Note: Someone’s caregiver advised me that after a number of years of daily use, the device may need to be replaced.

Here is a link for using the Aerobika with a nebulizer/compressor. Keep in mind that this company is recommending its own products.

https://www.youtube.com/watch?v=gR3zPFO9z_I

Operating and Cleaning Devices

A number of members commented that their supplier delivered their devices to their home, but stayed only 15 minutes or so to explain their uses. Many felt they were unsure on how to proceed after such a short tutorial.

For operating your new device, here are some suggestions.
1.    Read your user manual.
2.    Look for an on-line video.
3.    Call the manufacturer’s customer service line.

Cleaning Devices

AerobiKa-Use and Cleaning
https://www.nationaljewish.org/treatmen … e-aerobika

Using and Cleaning a Nebulizer Delivery System
https://www.nationaljewish.org/treatmen … structions

Balancing Your Disease with Your Lifestyle

There have been requests for discussion on how to balance your care with NTM with your daily life. Since we had a guest speaker last month, and lots of catching up with two new members this month, we were able to devote only 15 minutes to our discussion topic.  We hope to resume discussion next month, at which time we will attempt to cover this important topic in detail.

NTM Videos & Presentations

There was a request for webinars/videos/presentations. Here are some.

https://www.nationaljewish.org/ntmvideos2016

http://nyulangone.org/locations/bronchi … on-program

http://www.bing.com/videos/search?q=ntm … ORM=VRDGAR

Debbie Breslawsky
3/15/2017

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