MAC lung cavitary disease: Looking for success stories

I am slender. No autoimmune or CF. Best of luck!

Thank you @acelaplace and the best wishes to you too!!

I was diagnosed with MAC in 2019 (age 54), but my cough was not bad and I was afraid of the side effects of antibiotics, so I did nothing. I read MAC was a slow progressing disease, so I was not worried. My cough slowly increased to where I could hardly get through a sentence without coughing. Returning to my pulmonologist & ID doctor, I started antibiotics in 2021. I have been on them now for 27 months and my right lung is destroyed, all 3 lobes, with cavities. I've been referred by National Jewish in Denver to a cardio thoracic surgeon for a pneumonectomy. I have done far too much reaearch on post pneumonectomy pain syndrome, and I do not think I can bring myself to have this surgery. My left lung is carrying me. My oxygen remains 97 to 100%. The surgeon said I would not notice a difference in breathing after surgery. My advise to anyone recently diagnosed, to not delay or be afraid of starting antibiotics. What started as a small infection in my right middle lobe has now taken over the whole right lung. The funny thing is, I feel fine. Hoping it wont spread to the left & will stay contained to the right. Has anyone survived a pneumonectomy or kept the infection to one lung?

I am in a nearly identical situation . I was diagnosed 6 years ago. Surgery recommended 2 years ago. I did move from Colorado to the Gulf coast which improved my oxygen from 82-92 to 93-98% last year.

@sunnyday65 do you mind if I ask you specifics about your circumstances? I have cavity disease (NB-C) and am always curious about others journeys with cavity disease. Feel free to private message me if you prefer. My questions are:
1) did you have cavitary disease when you were first diagnosed, and if so, do you recall the number/size of the cavity(s)?
2) From 2019 to 2021 were you being actively monitored by your medical team for progression?
3) You mention that you have been on the antibiotics for 27 months, and it sounds like you are still on them. Have the number and/or size of the cavities increased while on treatment, or are they stable? I assume from your description your cavities have not improved. If stable, why is this not viewed by NJH as a positive response to treatment, is it because of 4) below?
4) Since it sounds like you are still on antibiotics I assume that means you cannot get to sputum conversion, correct?
5) Since you are at NJH, I also assume you have tried IV Amikacin or Arikayce without benefit, correct? And NJH has tried other antibiotics (e.g. clofazimine), etc. also without benefit? In other words, I am assuming the proverbial antibiotic bus has been tried, correct?
6) what are the NJH doctors saying about your inability to sputum convert and get stable on CT (assuming you are not stable on CT) with antibiotic treatment? Specifically what is the plan if you do not get a pneumonectomy?
7) you say you feel fine, and that your left lung is carrying you. This may seem like a strange question but how do they know your left lung is “carrying you”. I have cavitary disease in both lungs and also feel fine. I understand it’s a matter of degree (generally) and I get that your doctors are suggesting the pneumonectomy to contain the infection and hopefully stop spread to left lung, but my lung function is very good even with disease in both lungs so I am curious how they are measuring the function of just your right lung?
7) Lastly, do you have nodular bronchiectatic (NB) disease along with your cavitary disease or only cavitary disease (FC)?
A pneumonectomy will not be in the cards for me. While I have been told for the past 7 months that I have a single nodular cavity in left lobe, I recently learned that the CT reports for all three of my CT’s were incorrect and I also have a cavity in my right lobe, which was obviously disappointing on a lot of levels. I go to NJH in June.

I can answer your #7. NJH may routinely administer a Ventilation Perfusion (V/Q) Scan?
A V/Q scan is a nuclear medicine imaging test that evaluates the circulation of air (ventilation) and blood (perfusion) in the lungs.
Purpose of the Scan:
Evaluate lung function in patients with chronic lung diseases, such as COPD or asthma
Investigate unexplained shortness of breath
Assess lung damage after surgery or trauma
Procedure:
The patient lies on a table and breathes through a mask containing radioactive gas (xenon) for the ventilation scan.
A radioactive tracer (technetium) is injected into the bloodstream for the perfusion scan.
A gamma camera takes pictures of the lungs to show the distribution of the radioactive substances.

Hi-Thank you for the great questions. I wil aswer them all soon. Great respose to #7 from Rick.

@rstel7272 thanks Rick, I learn so much from this group.

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?

If you are considering the surgery, I would suggest you watch this video of a presentation by Dr Mitchell. It made me feel much better about the surgery