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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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@andyj

Thanks for your reply and info. I've thought of the mask idea too! Looks like you have the bronchiectasis (which I've just read about for the first time) diagnosis, but not MAC, and that you don't have any symptoms of active infection (what good news!). What prompted you to seek medical attention in 2016? I was bothered by several things which my PC doc sent me to specialist for: shortness of breath when walking uphill, weight loss, and sputum production which required 'clearing' daily and eventually became discolored. Initially I thought that A-Fib was causing shortness of breath, but after cardioversion and medication for A-fib last March, it didn't improve. I too have nodules and tree buds showing on CT scans going back 4-5 years but the doc suggested it might be COPD from 2nd hand smokers. Maybe the infection has been there for years!?!

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Replies to "Thanks for your reply and info. I've thought of the mask idea too! Looks like you..."

@andyj I have also been diagnosed with MAC/MAI. I’ve been having CT scans since 2013 which have always shown nodules. I was also told COPD. I smoked for 22 years and my parents smoked since I was born. In Sept 2016, I was also diagnosed with AFib. I was put on blood thinners. In Oct I started coughing up large amounts of blood. Went to the ER and stopped the Eloquis. I wound up having an ablation to get the AFib under control, my heart felt like it was exploding and they couldn’t get it regular with medication. During that time, a CT scan showed a large nodule in my left lobe. After 6 trips to the ER for coughing up blood, that Dec I Had to have the nodule removed and a biopsy. Dr said good news - no cancer. BUT “you have MAC/MAI”. For as long as I can remember I have had a cough, mostly dry, sometimes mucus, and constant throat clearing. Ten+ years ago I was told it was from acid reflux and post nasal drip. I wish they had told me then that could be a cause Of lung issues. I have some shortness of breath; if I walk quickly and talk, carry heavy things, walk in the cold, but otherwise that’s it. (I think if I lost about 15 pounds that would improve.) Other than that, no other symptoms, so no antibiotics. I have a CT scan scheduled for this Friday, hopefully it will be stable and prayerfully some improvements. It seems the nodules come and go, grow and shrink. But I NEVER go in hot tubs and although I LOVE swimming, I will NEVER swim in an indoor pool. I find the air just too hard to breath and I think there’s just too much bacteria. No water or ice from fridge, I boil my water. I also garden with a mask. I try to take precautions where I can. Sorry this turned out so long, lol. Good luck in whatever you decide.