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3 months after ending big 3 after 18 months - Mac seems to be back
MAC & Bronchiectasis | Last Active: 17 hours ago | Replies (27)Comment receiving replies
@mjb24 Mary after reading another recent post of yours where you described your left lung damage I wondered if surgery would makes sense for you. I have been following your journey (I am also treating with cavity disease) and so was aware from your posts the challenges you are having. Glad to hear you are reviewing your circumstances with the NTM clinic. We are hearing more and more about the role of surgery in treating these infections and would be curious what your team thinks about the role of surgery in your case. There does seem to be a VERY small number of people that the experts trust to do this type of surgery so it may make sense to seek one of them out and see what they think. I am a patient at NJH and they work with a surgeon in Denver. When I asked about the potential for surgery, my NJH doctor didn’t think that was on the table for me (yet) but said if I were going to have that surgery the only person he would recommend is the surgeon they use. I can’t remember the surgeon’s name off the top of my head but if you are ever interested in it, I am sure I can dig it up. Just let me know. Good luck!
Replies to "@mjb24 Mary after reading another recent post of yours where you described your left lung damage..."
@bayarea58 only 2 surgeons do this Robotic Lund resection in all of Manhattan,and I had the best ..I wasn’t able to get a good sputum test before the surgery and haven’t done one post surgery. My cavitary mass showed up on a chest x-ray as an incidental finding, and then on a CT scan and then on a pet scan. I did biopsies which did show positive for MTM disease. My surgeon, and I totally agree that the antibiotics cannot penetrate a cavitary mass to get through the white cell outer coverage to get to the infectious part in the middle of the cavity .
Of course, Many pulmonologist and infectious disease people have to go by the book and insist that you do antibiotics even though it’s useless.
My surgery was really easy. Recovery was really easy and it’s the best decision I ever made….i had my surgery in March ,…my 3 month post surgery CT was negative and I have no symptoms….i just walked a 20 min mile and I feel good ….and I’m old ! I did, however, lose a lot of weight from this disease and nobody put it together until I had a chest x-ray and found out what I had.
I went down to 84 pounds and now since the surgery I have gained 6 pounds and hoping for more .
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@bayarea58 Thank you for your response, I appreciate your input. I am interested in discussing the possibility of surgery with Dr Moguillansky at Shands. If that should become an option, I would definitely like to have the name of the surgeon you mentioned. I am sorry that you are also struggling with cavitary MAC, it can be a real bugger! From reading your posts, you have definitely done your research and are diligent in fighting this disease. I appreciate all the information and personal experience you share with the group. Thank you for that! Wishing you health and happiness!