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New Diagnosis of MAC/MAI & I'm scared

MAC & Bronchiectasis | Last Active: Oct 13, 2022 | Replies (349)

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@ginak

@andyj Before I had the nodule removed in 2016 no one mentioned MAC. That diagnosis came from the surgery at NYU. My pulmonologist told me about the antibiotics and asked me what i wanted to do. That’s when I began seeing Dr. Kamelhar in NYC. He ordered the sputum induction 6 months later. After the 3 days of samples, it still showed evidence of MAI/MAC. He then sent me for a swallow study, which showed everything normal and no aspiration. He doesn’t recommend the antibiotics. I have had no other symptoms since the original diagnosis in 2016. My most recent CT last week shows everything still the same. Nodules are “waxing and waning, some evidence of inflammation/infection consistent with NTM, bronchiectasis and COPD”. I look at that as good news. Although it’s not gone, it’s not any worse. I still feel good and continue to do my lung clearance twice a day and nebulize the saline once a day. I’ll see him again in the spring. I’m sure he’ll send me for additional sputum sample and we’ll see from there. The nodules are there, waxing and waning, since my first CT scan in 2013. Good luck on your journey with this. Everyone remains in my prayers.
Gina

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Replies to "@andyj Before I had the nodule removed in 2016 no one mentioned MAC. That diagnosis came..."

My doctor wanted me a big three. I tried them twice couldn’t do it. So like you I feel good I’m symbicort because of the cough and sputum was all day. We take one day at a time and like you said prayer. My doctor is on Long Island so if I need NYU it’s just a train raide.