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MAC lung cavitary disease: Looking for success stories
MAC & Bronchiectasis | Last Active: Feb 13 12:24pm | Replies (23)Comment receiving replies
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?
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@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.