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Anyone have cavitary MAC?

MAC & Bronchiectasis | Last Active: Sep 12, 2023 | Replies (67)

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When I was first diagnosed, I had a 1.1 CM cavity. My first two doctors recommended not to treat. Then I went to National Jewish Health for a third opinion, and they recommended treatment. By that point, my cavity had grown to 2.2 CM. Per NJH recommendation, I started airway clearance, but had to postpone Big 3 treatment because of the pandemic. Fortunately, my cavity remained stable (somewhat shrinking). I believe this was a function of my saline/nebbing routine. Also, my bacterial colony count dropped dramatically.

Since going on the Big 3 and Arikayce, my cavity has collapsed and turned opaque. It is now a calcified clump of scar tissue, which is a good thing as there is no chance of it turning back into a cavity . The clump is down to 1.1 CM and shrinking and I have tested negative for several months in a row (since adding Arikayce to the Big 3). The treatment has also been virtually side effect free for me, other than intermittent hoarseness.

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Replies to "When I was first diagnosed, I had a 1.1 CM cavity. My first two doctors recommended..."

You are so fortunate to have a cavity that collapsed. Mine is 1.2 and I am waiting for a call on Tuesday 1-3-23 from a nurse at NJH to see if I can get an appointment. I have the Big 3 ready to start but wanted to see what she says first. Did they start you on Arikayce right away along with the Big 3? What times of day worked for you because I hear so many different times that work for people.
I am going to try and stay ahead of all the symptoms if possible (positive thinking). LOL
I really appreciate any info.