It is shocking to me that in New York City, at a major hospital, seeing the head of the pulmonary department just wasn’t enough. My doctor did not prescribe pulmonary function tests, regular sputum cultures,saline nebulizing, or discuss how to handle a flareup. I am switching to one of the top doctors in NYC in September. I’m paying out of pocket to establish myself with her until I can switch insurances in January. I think it’s worth it though. It’s a really bad feeling when you don’t have confidence in your doctor. But, as we are saying, we have to advocate for ourselves!! Going to the monthly NTM meetings is extremely helpful. In fact, I would not have been able to see this new doctor without being part of this group. She is not excepting new patients unless you are a member of the NTM support group.

@vestafit Wow! That is impressive that NTM has that kind of pull, and that they have your back. I went to one of their Annual conferences in D.C. two years ago and learned so much. I am thrilled to learn that you are seeking the best medical help you can find. I went years seeing 'the best pulmonologists' in major cities, not a one ever did a sputem test to see what was giving me pneumonia repeatedly. I have a feeling it was mac and not pneumonia. I have a good sized chunk of dead lung tissue as a result. My spirometric breathing tests show I have 37% lung function; I do very well breathing despite that. Aside from extreme fatigue taking me down from time to time ; I live a normal life. Your NTM support group sounds intriguing, can you tell me what your meetings are like?

@vestafit Hi, I’m in NYC also. What Dr were you seeing? I see Dr. Kamelhar. He hasn’t put me on any antibiotics either. He says that’s the last resort if we can’t control it with lung clearance exercises. I take a good probiotic and Isotonix. I also have bronchiectasis, which many others on this sight have, and acid reflux. Where do you go to the NTM meetings?
Gina K