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 14:27:30

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

New York Metro Sept. 2014

NOTES FROM THE PALM SPRINGS AREA NTM
(MAC) SUPPORT GROUP MEETING
NOVEMBER 10, 2014


THE LOSS OF ONE OF OUR MEMBERS

We lost Dolly Schultz a few weeks ago. She did not pass away from NTM but from some unrelated disorder. I had been keeping in touch with her daughter (Dolly did not do email) since she joined us at our very first meeting, who indicated that both she and her mother were grateful for all the information provided. We extend our condolences to Dolly’s family and to her friend Peg Baker who is also a member of our group. Dolly will be missed. 

NATIONAL JEWISH EVENT

National Jewish is hosting an event the evening of Thursday, March 5, 2015. Marc and I are hosting at our home in La Quinta, CA. Dr. Charles Daley is scheduled to be the guest speaker and will talk about NTM. Cocktails and heavy appetizers will be served. Music is planned as well. Information will be sent to the members of the Palm Springs Area Support Group. If anyone else who happens to be reading this is interested in attending, who would like to fly out to Southern CA (usually beautiful weather in March), please send me your email address for the eblast and mailing address for the hard copy invitation. I will forward your contact information to National Jewish and they will include you on their list. I can provide you with lodging information.

NEW MEMBERS

We had three new members join us, all referred from our local pulmonary and infectious specialists. In the first case, her local physician is having a great deal of difficulty treating her because of her inability to tolerate the meds. Biaxin and Rifabutin have caused elevated liver enzymes. (This is why it is so important for patients on the antibiotic cocktail to be monitored by blood tests as well as vision and audio screening.) Her infectious disease doctor is in the process of referring her to National Jewish. Hopefully, they will find a way to treat her successfully. She had questions about what precautions should be taken when flying. That is the topic of this meeting and will be discussed later.



Another new member had been diagnosed 5 years ago and trusted her doctors totally. Initially she was feeling ok and was functioning fairly well. She now finds herself in a wheel chair needing oxygen 21/7 and a caregiver. She is dismayed by her present condition and feels she should not have trusted her doctors. She says it is too late to do anything, as one of her doctors basically told her there is nothing more that can be done for her. Many in the group told her not to give up and to seek further, such as going to National Jewish, U of Texas Medical Center in Tyler, TX or another national specialist. Her mindset was disheartening. We realize there may be others out there who feel the same way, but hopefully with the encouragement of other pro- active people in support groups across the country, they will be motivated to look further.

The third new patient was diagnosed in February after experiencing hemoptosys. She has found a pulmonary specialist in our local area who treats a number of NTM patients and did a rotation at National Jewish. She is taking Gamma Globulin injections to boost her immune system (not sure who prescribed). She has weathered Rifabutin and Azithromycin, and despite gastrointestinal issues and itching, her CT scans improved in the last 6 months.


VACCINES

Although we have recently discussed vaccines, there are still questions, especially about the Pneumonia vaccine(s). Here are the recommendations from the Centers of Disease Control.

Pneumococcal Vaccination
Pronounced (noo-muh-KOK-uhl)
Pneumococcal conjugate vaccine (PCV13) is recommended for all children younger than 5 years old, all adults 65 years or older, and people 6 years or older with certain risk factors. Pneumococcal polysaccharide vaccine (PPSV23) is recommended for all adults 65 years or older. People 2 years through 64 years of age who are at high risk of pneumococcal disease should also receive PPSV23.

http://www.cdc.gov/vaccines/vpd-vac/pneumo/default.htm

USE & CARE OF SHOWERHEADS

One of our members removes the showerhead completely to avoid the aerosol effect. She feels the steady stream of water may spray out less NTM. This is unchecked and just a theory.  Another cleans her showerhead with Lime Away & vinegar. Vinegar may kill NTM germs, but Lime Away has not been proven to do so. The best germ killer is submerging the showerhead in boiling water for at least 10 minutes.

TOPIC-LIMITING EXPOSURE TO GERMS, ESPECIALLY ON AIRPLANES

An article in USA Today spurred the discussion on how to limit the germs we are exposed to. Although the article focuses on germs on airplanes, there are other situations in which these hints can be helpful. The link to the article is attached.


1.    Although most people think the danger on planes is from the re-circulated air in the cabin, the greatest danger lies on the chair upholstery, tray table, armrest, seat belts and toilet handle. Many of us purchase a travel packet of Clorox Disinfecting Wipes, which can be placed in a carry on bag. I wipe all of the above plus seat back pocket contents and the pouch itself.

2.    If you think the planes are cleaned between     flights, think again. Turn around time between flights is short. Again, consider disinfecting wipes. Some airline companies do better than others, but most likely not germ free enough for people like us with compromised immune systems.

3.    Airlines do not take adequate steps to rid disease. However, diseases such as Ebola are not contracted on planes, but rather through direct contact with bodily fluids of such patients.

4.    Tips from group members: Carry and use hand sanitizers to kill germs. When flushing the toilet, close the lid to prevent the water from spraying in the air. If you can avoid touching escalator handrails, do so. If not, be sure to use hand sanitizer afterward. Use wipes on the handle and upper basket of supermarket carts. Many of the supermarket chains provide wipes outside the entrance. One of the gals uses a mask on airplanes and coats her nostrils with Neosporin. Keep your shoes on. TSA offers a pre check program for fliers. If approved, you are not required to remove your shoes. There are other benefits, which should enable fliers to check through security more quickly. We were told that if you are over 75, shoe removal is not required for most people.

http://www.tsa.gov/tsa-precheck/what-tsa-precheck

Link to USA Today Article:

http://www.usatoday.com/story/travel/fl … /17044509/

Submitted by Debbie Breslawsky,11/17/2014

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