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Just found out I have mycobacterium abscessus!

MAC & Bronchiectasis | Last Active: Apr 12, 2023 | Replies (118)

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@painter2

I do airway clearance twice daily & an extra when I have an exacerbation.... it definitely works when done correctly.
I think there are a lot of patients who don't do it because it's time consuming and messy so patients like my mom give up.....and so some doctors may have become frustrated & given up on suggesting it.

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Replies to "I do airway clearance twice daily & an extra when I have an exacerbation.... it definitely..."

Ive got MAC, and after my Super D Navigation Broncho9scopy. which confirmed it, I had test which showed low gamma globulin (low natural immunity) and also CT shows some but not a lot of bronchiectasis. I had a really dry cough for years. When I got on the MAC investigation in 2018, I could not even get a sputum sample, and then when I finally did I had like 3 colonies, but then had 60 colonies a year ago out of blue, when I was feeling fine, after doing a lot of airway clearance for the preceding week. Sometimes I would go through a couple months of chills, and increased coughing and then that would resolve on its own. I've pretty much quit doing airway clearance because I hate it, but also I switched doctors and the new one does not particularly encourage it. Reading about all of you doing the airway clearance has motivated me and I am going to start again, but Im in wildfire smoke right now and I really do not know if Huff coughing is good in this environment. I also have used a Respirtech vest 2 years ago, but shortly after starting it (and it really did produce mucous after my cough being totally dry) I got a concussion (about 20 months ago) and couldn't use the vest afterwards, it because it jiggled my necking triggered the concussion symptoms -- but that sensitivity is over I think now. So I think I will go back to it. My daughter in law suggested I find a TV program I like and watch it when I use the vest to encourage me. Im not a TV watcher so this would be a treat, I could binge watch some ridiculous program. I travel a lot. and I cannot haul that the vest apparatus with me. But--- I am very conscientious to do my infusions weekly with Hizentra, which is subcutaneous gamma globulin from pooled blood supply ( I use two needles in abdomen with tubing to syringe with pump for 1 hour 15 min-- 6ml). For last 6 months Ive had a very different cough-- I got the flu in January, and symptoms are a lot like I read about COVID so I end up getting tested for COVID. Also, the infusions trigger flu-like symptoms sometimes, but not others. So that's my story. I have one infectious disease doctor who is convinced a lot of my problem is GI reflux-- the gastro doc says no.