Hi Xena: Your situation is very similar to mine. I had my right middle lobe removed in 2002 at NJH. (I have MAC and bronchiectasis in both lungs and I now have “progressive cavitary MAC”). Since that time I have been to all 3 of the big MAC Centers. They all had different ideas about how to treat this disease. Who’s right? ALL OF THEM.
I think your visit to NIH is going to be a positive experience for you. They will test every part of your body if you are enrolled in the MAC Clinical Trial. I’m not sure how they do things if your not. Everything but your transportation the first time you go is free. The 3 MAC Centers see hundreds of patients a year and suggest the proper treatment and once you get back home they will work with your local Dr. It’s very important to have a local Dr that will agree to consult with your MAC Dr.
Another thing you can do is go through this forum and try and read as many postings as you can. Many MAC’ers that post here have been to NJH and NIH. Carole