NTM Northwest Support

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

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#1 2017-04-12 09:09:37

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

Palm Springs NTM Meeting April 10, 2017

NTM Support Group Meeting Notes,
Palm Springs and Desert Cities Group
Meeting of April 10, 2017

Speaker Representative from National Jewish Health

We had two different speakers at this meeting. Michael Andrulis, Director of Regional Development in the LA Office, spoke about the different specialties at National Jewish in Denver. He took the time to listen to the individual issues of our members, and offered his assistance regarding treatment at National Jewish if needed.  He explained that being followed up at National Jewish at least periodically, would be beneficial, as their entire team will assess a patient’s condition. We appreciated his interest and overview. As a reminder, the National Jewish Lung Line is a service provided to anyone. You may ask for an NTM nurse who will answer questions about your health or schedule an appointment. 1-800-222-LUNG (5864).

Speaker from Electromed, Maker of SmartVest Airway
Clearance System

Kathryn Wright discussed the advantage of the Smart Vest. They have been producing their vest for 20 years. She touted its comfort and explained that there have been studies done that show that airway clearance with a vest have decreased the need for antibiotics, emergency room visits, and have increased the quality of life for many patients.

The process to obtain the vest (any vest) is a follows:

A prescription is needed from your doctor. It is best to get it from your pulmonary or infectious disease doctor who would be most knowledgeable in providing the detail so that insurance will cover it.

It must be indicated that the patient has bronchiectasis, has had a productive cough for at least 6 months, and has failed other therapies, such as hand held airway clearance devices (AerobiKa, Acapella, etc.). Any bronchospies, sputum inductions, CT scans showing worsening of NTM, antibiotic treatment should be noted.

The prescription can be faxed to Electromed. They handle insurance reimbursement. Kathryn indicated Smart Vest (around $8,000) is considerably less expensive than Hill Rom (around $16,000). This may be a consideration if insurance will not cover it for you.

They will send a training person to your home to explain use and care and will follow-up with compliance checks by phone.

After insurance pays the entire cost, usually over a year’s time, it is your piece of equipment to keep for a lifetime. They offer a lifetime warranty for all parts, and will replace defects if any, at no charge.

Kathryn did a demonstration and offered many in the group a demo.

I would be interested in comments from anyone using the Smart Vest, Hill Rom Vest or Afflovest, three different ones on the market. If there is anyone who has used two different kinds (probably rare), it would be interesting to hear about any preferences. The comments can be shared, which might be very helpful to anyone who contemplating requesting a vest from their physician. They are the strongest devices for airway clearance.

Patient Discussion

In today’s meeting, it was shocking to hear that a number of the doctors were asking their patients if they wanted to go on antibiotic treatment. When visiting an NTM specialist at National Jewish, NIH, University of Texas Medical Center in Tyler, TX as well as at other specialty centers, those physicians tell the patients when antibiotic treatment is needed. Their recommendations are based on their extensive expertise in treating many patients, as well as their research.

It was also surprising to hear that many in our group had not been given cultures in many years. Some of their doctors relied on numerous CT scans, which provides only half the picture. The gold standard for diagnosing and treating NTM are CT scans and sputum cultures.

One of our members is experiencing a great deal of bruising and thought it may be a side effect of Symbacort. Although listed as an infrequent side effect of Symbacort, others have bruising as well, who are not on the bronchodilator. It is thought to be such things as part of aging, thinning skin, and being out in the sun. Recommendations for bruising: Arnica ointment or pellets under the tongue, aloe from an aloe plant and clothing containing SPF (sun protection), especially shirts with long sleeves and lightweight long pants.
We spoke about managing NTM while living our lives. Many have made choices to avoid crowds, cruises and humid climates. We realize we can have fun anywhere doing the things we enjoy. It’s not necessarily where we are, but rather the activities we do and the people with whom we hang out.

Submitted by: Debbie Breslawsky
Founder/Leader, NTM Support Group
Palm Springs and Desert Cities

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