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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
Hi Sue I was sick back in December 2019 and every X-ray and ct scan I took it showed fuzziness in my scans, inflamed so My pulmonologist put me on antiobiotics 3 rounds of it and predisone pills did repeat ct scans and they were showing nodule slightly larger still inflamed so they decided to do a lung biopsy so I did that dr recommend surgery to cut out nodule that was slightly larger I said no way Im Going to Manhattan to Sloan Because now I’m feeling pain so I did I went in To do this last August to see what was going on and for a second opinion thank god I did , dr told me let’s do a bronchoscopy so I did that and that’s when he said it was MAC I then followed up with another pulmonologist where I live Cause my first one I didn’t trust and My new pulmonologist he said take Arikayce so it’s been 3 days on it so far Praying I get better he says I need to be on this for 12-18 months I had training today for it to make sure I was doing it correctly when I clean unit and if I’m using nebulizer correctly. Write me back sue if you could thanks how are you feeling tell me about your experience as well I’m glad we can chat with each other I feel little better that we could do this . Thanks
Replies to "Hi Sue I was sick back in December 2019 and every X-ray and ct scan I..."
Hi Jennifer, Sounds like you have had a rough year. It does get easier but there is no denying life is different. I was first diagnosed with COP in 2014 following a diagnosis of pneumonia that did not respond to antibiotics. A CT scan showed opacities and nodules. A bronchoscopy with cultures found MAC. Prednisone calmed my lungs but showed extensive bronchiectasis. Over the last 6 years I’ve had a PICC line in for treatment of MAI and been on the big 3 for 2 years for MAC. Right now my pulmonologist and ID doc are doing the wait and see approach as I feel good. Still have some nodules but they are so much smaller. So some advice. I am a rehab nurse and learned early on exercise was so important for my lungs and wellbeing. I do breathing exercises everyday and 30 minutes on a stationary bike. 2 walks a day. So far my lung function is normal and my goal is to keep it there. Learn your body and follow your instincts if you feel something is off. Good luck with the medication. You are not alone.
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@jr2366 Your story sounds a lot like mine. Except I had that lung surgery at NYU to cut out the nodule and do the biopsy. It was very painful, especially every time I coughed! That’s how MAC/MAI was diagnosed. I’ve never gone on any meds because my yearly CT scans show the nodules “wax and wane” and are relatively small, also, aside from the cough, I have no symptoms from MAC.