I'l try to answer your questions without writing a short novel!
When I had my first CT in 2019, they discovered bronchiectasis & a collapsed right middle lobe. I had nodules in the right. After a bronchoscopy they discovered MAC. Pulmonologist recommended removal of right middle lobe & that I start antibiotics; I declined. I could live with a mild cough. Over the course of the next 2 years I had no monitoring of any kind. My caugh gradually got worse...I could hardly talk without coughing. Foolishly, I took a lot of cough suppressants during this time so I could talk. I returned to pulmonologist & ID doctor in 2020. Still no cavities but the right lung was infected in all 3 lobes. That is when I started ethambutol, azithromycin & rifampin. Coughing stopped within a few weeks and I was sure I would have "cultutre conversion". I could never peoduce sputum , so I had a 2nd bronchoscopy and that showed I still had MAC. My local pulmonogist said he was at the end of his treatment options & referred me to National Jewish. He told me he thought I might need a pneumonectomy. Long story short, I was at NJ for a week of testing 7/24. Very impressed with that whole process. I met with many doctors and had many tests run. The most enlightenimg was the V/Q. I found out I have 9% profusion (blood supply) and 14% ventilation in my
right lung, and 91 % profusion and 86% ventilation in the left lung, hence, the left lung is carrying me. NJ had the CT that I had done locally re-read by one of their sub specialty trained cardio thoracic radiologist. That is when I discovered I had cavities. I had another CT done 12/24 and the cavities have increased. I am now taking clofazimine instead of Rifampin. The only indication for me taking Amikacin would be via IV in preparation for surgery. I have what they call refractory MAC cavitary disease. This is the more aggressive & very difficult to treat kind. I met with probably the best cardio thoracic surgeon out there, Dr. John Mitchell. I feel 100% confident in his skills & expertise, but I can't wrap my head around a pneumonectomy. I am terrified of the pain and possible complications. Plus, I feel too darn good right now. The concern is if it spreads to the left lung, then what? I go back to NJ to meet with my ID dr and the surgeon 5/25. I will try to get a sputum sample and will hopefully test negative for MAC. Not holding my breath. Glad to hear you are holding strong & feeling good. Has surgery been brought up as an option for you and if so, what are your reservations?