NTM Northwest Support

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

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#1 2017-12-19 17:24:55

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 156

PALM SPRINGS NTM MEETING DECEMBER 11, 2017

The theme of this month’s meeting was airway clearance. Whether or not you are on antibiotic treatment or not, airway clearance is considered an important aspect of managing NTM and bronchiectasis.

THE AEROBIKA
The Aerobika is a hand held device used by many of us. For those who are not familiar, the Aerobika Oscillating Positive Expiratory Pressure (OPEP) Therapy System made by Monaghan is designed to aid in loosening and removal of mucus build-up in the lungs. The device can be purchased through Electromed (a supplier) or other durable medical equipment companies (medical supply companies) ($99) with a prescription. If covered by Medicare or other insurance, we have been told that $30-$35 may be reimbursed. The Aerobika may be purchased on Ebay or Amazon at a lower cost without a prescription in most cases. National Jewish provides the device at most visits for their regular patients. If using hypertonic saline from a nebulizer, the Aerobika can be easily attached to perform both treatments simultaneously. For those on the Acapella, an earlier generation airway clearance device, there are attachments available to adapt to the nebulizer.


THE SMART VEST
We welcomed our guest speaker, Kathryn Wright from Electromed who spoke about the Smart Vest. The Vest is more of a heavy- duty airway clearance device than the others discussed. Many of us use the vest along with the Aerobika and inhaled saline.

http://respirent.com/product/electromed-smartvest/

According to Kathryn, studies have been done showing that with the use of the vest, antibiotic use decreased in 44%-74% of their patient sample and 68% felt better. The vest helped to slow progression of both NTM and bronchiectasis in many of their patients. 

Not everyone is eligible for approval by insurance companies for the vest. The cost of the product is between $4000-$10,000. In order to qualify for reimbursement, the documentation needed is as follows:
. Daily productive cough for at least 6 months or frequent exacerbations requiring antibiotic therapy (i.e. more than twice annually)
and
. Failure of standard treatment (such as OPEP, Aerobika or other airway clearance device) to mobilize secretions
and
. HRCT (High-Resolution Computed Tomography), commonly known as CT scan, confirming bronchiectasis diagnosis.

Electromed will help facilitate the process of obtaining the Vest. They understand the documentation needed and can guide physicians as to what is required in their clinic notes to expedite with Medicare and other insurance companies. 

When qualified, Electromed provides a customer service liaison. A trained therapist will deliver the device to your home and programs the machine according to your doctor’s recommendation. At any time during the lifetime of the vest, the user may contact Electromed for assistance.

Marcia did a demo of the Smart Vest. She found it comfortable and lightweight. Like many of the standard vests, it is not portable, but may provide a stronger pounding than the portable ones.

Although no one in the PS group has a portable vest (Afflovest, Monarch by Hill Rom), we are interested to hear from anyone out there who uses one, especially someone who has used both types. It was pointed out that most portable vests are equipped with a battery pack which adds weight, totaling 13 pounds which must be carried around.



ADDITIONAL COMMENTS

Flu Shots for very ill patients:
Walgreen’s came out to the car to give a flu shot to one of our very severely ill members. He did not have to go into the store to be exposed to the germs of other people, and did not have the energy to do so. A nice service.

NTM, Bronchiectasis & GERD:
One of our members found that discontinuing Omniprozole (a generic protein pump inhibitor, PPI) such as Nexium, Prevacid, etc.) resulted in no coughing. Usually, most people find the opposite. It is often mentioned that a PPI is not recommended unless GERD is severe because the PPI reduces the acid in the system, which can result in greater proliferation of NTM. 

Apple cider vinegar was mentioned as a natural way to control the symptoms of GERD.


INTERESTING READING

I appreciate the articles I receive from many of you. Thanks so much for the updates. Andy sent the following. Thought I’d share.

Overuse of antibiotics: I’d like to comment on this article. I believe it was written in the spirit that throughout the years, antibiotics have been over prescribed and overused. It is suspected that superbugs have evolved as a result. Therefore, when needed for something really important, such as NTM, patients may have become resistant to some. I include this not as a deterrent for using antibiotics for NTM treatment, but to explain why indiscriminant use can lead to resistance. If prescribed, antibiotics can be important part of your treatment. It is my hope that new, more effective antibiotics or substitutes can be developed for us.

http://www.bbc.com/news/health-41693229


From Bronchiectasis News-(Andy, you must be a mind reader. This was presented at last week’s most recent meeting.)

https://bronchiectasisnewstoday.com/201 … 5-71461309 

Here’s to a healthy and happy 2018! Thank you for your support. I appreciate all of it.

Warmest wishes,
Debbie

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