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What to do in life before the Big 3?
MAC & Bronchiectasis | Last Active: Jul 25 8:51am | Replies (24)Comment receiving replies
@letsjustbreathe I am going to address both of today's questions here, because they are related.
First, can you share a little about you diagnosis - when and how was your infection diagnosed? Do you have MAC (mycobacteria avium complex), pseudomonas, or something else? What symptoms do you currently have? And what is your current practice for airway clearance to help keep the mucus out of your lungs?
Lots of questions, I know, but many people never need to start antibiotics at all. Some people clear MAC spontaneously, and for others it remains at a low enough level to tolerate.
Are you seeing a pulmonologist experienced in treating MAC?
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@sueinmn
Hi, I'll be happy to share more.
Bronchoscopy in 8/2024 found pseudomonas, MAI (Mycobacterium avium-intracellulare), aspergillus, and staph. The MAI was in the BAL sample only, not in the RML sample. We've been watching since then, since I didn't feel sick (and I still don't.) Unfortunately, things have progressed-- more inflammation, tree-in-buds, etc. especially in the RML and LL. And now there's (probably) cavitation. We're watching 4 possible cavities-- they are very small right now-- the largest one is 1.4 cm. Since the bronchoscopy I've submitted 3 sputum samples and they all have shown pseudomonas and staph, but MAI and fungus are negative. The theory is that I just am not getting the samples from the infected areas, because everyone seems to agree that my CT scans show MAC progression. I found a specialist in my area 8/2025 and I recently did the work-up at NJH. (Waiting on 3 sputum culture results submitted while there.)
I'm no longer in my phase of denial, and it looks like MAC drugs in about 6 months, when I do my next CT scan. Boo.
Regarding AC, I nebulize 7% saline (17 minutes) and do my variation of autogenic drainage while laying almost flat in a recliner (30 minutes). I get out maybe about 1/8 of a cup of sputum each day. I'm in the process of ordering a vest. When that arrives the plan is to do 7% saline, Aerobika, and vest all at the same time, with intermittent huffing. I'm also supposed to do this routine twice a day.
Oh, I also have bronchiectasis.
If there's anything I left out, feel free to ask!