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 14:10:08

Registered: 2016-05-30
Posts: 37

Palm Springs NTM meeting Feb. 2014


Meeting Schedule

Annenberg Health Sciences Center, Eisenhower Medical Center Campus, Rancho Mirage, CA.
*Note time of each meeting.

March 3, 2 pm
April 7, 10 am
May 5, 2 pm*(recently added to the schedule)

National Jewish Health in Denver, CO

A great deal of the meeting was spent on treatment at National Jewish. One of the group members had recently returned from Denver and was   happy to share his experience. He indicated that his workup included such things as an information manual, scans, x-rays, a hearing test, blood work, a cardiology exam and personalized programs, such as pulmonary rehab and other therapies tailored to his individualized needs. A swallowing problem was identified and dealt with, something that hadn’t been addressed by his local doctors. He was taught exercises to deal with this issue, which is thought to have a possible connection to re-infection of his NTM.

The first week was his workup. At the end of that week, everything was summarized. During the second week, he attended classes, which he thought were very good.  He received quick answers and indicated this has been the best hospital experience he has ever had. At NJH, your doctor meets with all the specialty docs as well as other specialists on your team. A great deal of experience came together in determining his treatment and he now feels he has and more knowledge resulting in better control on how to proceed.

In the Palm Springs area, there are many doctors who are knowledgeable about NTM. A number of them have referred their patients to National Jewish when they have not achieved the desired results. After the workup at NJH, these local docs are continuing with the recommendations of NJH and in some cases, consulting with them. (National Jewish offers of Physician Hotline.) Most of these docs seem to like working with National Jewish.

We took a survey of our group to see how many of us had gone to Denver for their treatment. More than 50% had been treated there. One patient was leaving the day after the meeting for her workup. Three more indicated they were calling to schedule an appointment. Perspective patients have so many questions on what to expect. The responses and input of fellow group members have proven to be invaluable and comforting to patients who do not know what it is all about..

New Members

Our group continues to grow, with three new members this month. One has been on the three antibiotics for MAC, but he says they are not working. It appears that he has not had sensitivity testing on his culture from his bronchoscopy.. While on the meds, his symptoms improved slightly, but since going off the meds, his cough has worsened. He is one of the people that is planning to go to National Jewish. 

The caregiver representing his wife who is planning to attend a subsequent meeting gave us the background of her case. She started antibiotics 2 ½ years ago but still coughs. It is unclear whether she has continued the meds up to this point. He is in favor of his wife going out to National Jewish and has expressed interest in scheduling an appointment.

Acid Reflux (GERD)

There was a discussion about how to deal with acid reflux. It seems as many NTM patients are have been diagnosed with GERD.  Our concern is that we may be re-infected if the stomach contents are aspirated into our lungs, especially when lying flat as we sleep. Some members have been taking Prevacid. Another mentioned Protonix. These proton pump inhibitors (PPI’s) may actually provide an environment for the bacteria to grow. It is evident that we need to have a more in depth discussion of measures that can be taken to deal with GERD including diet, sleeping in an inclined position, exercises that are beneficial as well as those that should be avoided, etc. Hopefully, we will devote one of our meetings to this subject. Stay tuned.

Tolerating Antibiotics

Kefir, a food containing natural probiotics was recommended for those who are having difficulty tolerating their antibiotics. A heavy-duty probiotic supplement was also recommended. One of our members had been feeling ill. We suggested changing the time of day when they are taken, taking with food if had been taking on an empty stomach, and vice versa. After listening to these suggestions, she says she is now feeling better.

Pulmonary Rehab

Our guest speaker was Debra Fuller, managing nurse for the Eisenhower Respiratory Therapy program.. It was coincidental that this month’s meeting in NY had as their guest speaker someone who discussed this same subject.. Respiratory therapy programs vary from place to place. The Eisenhower program in the Renker Wellness Center is a 3 day/week for 8 weeks program.  Each session includes 60 minutes of strength and balance followed by a 45-minute class. A thorough evaluation is given to each patient as the program progresses. There are usually 12-16 people in a time slot, with a ration of 4:1. Home activities are recommended.

Debra gave us the parameters of Medicare coverage. A local doctor who has the referral forms must recommend you. Your physician must order a pulmonary lung function test. Your levels must be below a certain performance level to be covered. Fev1, less than 80,and/or Fev ratio, less than 70, and/or DLC, less than 60. Medicare pays for 72 lifetime sessions. Their program for most people is 33 sessions. Others can be covered in the future.

If  not meeting the Medicare parameters, some people will opt to cover the cost on their own. This may be a good investment in ones health.

D. Breslawsky


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