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Advice for recently diagnosed with MAI

MAC & Bronchiectasis | Last Active: 3 days ago | Replies (7)

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@circleup

I too, am recently diagnosed with MAI, discovered by accident during the hunt for lung cancer. I am asymptomatic with extreme fatigue from it. I am 69 yo female, long childhood, adult history of pulmonary issues. So my xrays and CT scans show the battle scars. Clean bill of health with my heart. I was referred to an ID. He immediately wanted to do the big three. Didnt give me an option of doing yearly surveillance. Did the meds for 8 months, did CT scan and showed no changes. I have now stopped the meds and the doctor has dismissed me from the practice for being non complaint. Pulmonary has no experience with MAI but agrees to do the yearly CTscans. I have not been given any education, so i researched on my own. I am worried now because i am short of breathe. I am living my best life and limiting my exposure. But i am told this will be with me forever. This site gives me the most support and gives me advice as to what to discuss with my doctor.

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Replies to "I too, am recently diagnosed with MAI, discovered by accident during the hunt for lung cancer...."

@circleup Don't you just hate it when docs dismiss you instead of working with you on a solution? My first pulmonologist did that, but it turned out to be a blessing in disguise - the ID doc referred me to a better pulmo, who works nicely with a team.
I am so glad the members here have been helpful.
Are you doing airway clearance every day? Using saline ?