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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 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.

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Replies to "@andyj I have also been diagnosed with MAC/MAI. I’ve been having CT scans since 2013 which..."

@ginak Hi Gina. I think that taking all of the precautions and turning up my water heater has helped to keep me infection free over the past six years. That, and antibiotics.

@ginak your reply states so many of my symptoms. After 3 years of doing what you are doing, I live a good life. I do suffer from acid reflux and my latest CT scan stated.....nodules due to aspiration.
I feel blessed to only have theses few symptoms .
@janovr

Oh, my goodness - did it take that long for the MAC diagnosis? I appreciate your sharing and read every word. Have you provided sputum for lab analysis? Seems like a doc would be recommending antibiotic treatment. Sorry this reply took so long...I'm kind of in denial, but going to cardiologist today to discuss changing a medication that would interfere with MAC treatment. Hope your CT scan was informative in a positive way!