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Seen my pulmonologist about MAC

Posted by michaeld1 @michaeld1, Aug 8 1:56pm

He wasn’t a lot of help with my questions. He doesn’t think it necessary to boil water.
Take me off breathing meds with steroids in them. Doesn’t thing the 3 meds are that bad to take. Of course he’s never taken them before. Also just get my eyes checked. There’s one thing he said that I am not sure of. Does anyone here with only MAC get sort of breath??

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Rick | @rstel7272 | Aug 15 7:12am
In reply to @michaeld1 "I went to Henry Ford Hospital yesterday. What a totally different experience for the better. My..." + (show)
@michaeld1

I went to Henry Ford Hospital yesterday. What a totally different experience for the better. My new ID disease doctor is a gift! She is upfront about what I could potentially run into. She changed the rampafin to on that’s easier to take. I as right that nasty stuff was effecting all my meds. She had to get my blood pressure down and was threatening to put me in hospital. It work out, I got answers to my question. Also found out I was still withdrawing. I went seen a pain doctor this was from my rheumatologist and was but on buprennorphine I didn’t want to try a true narcotic because of the prejudiced from other doctors. It’s working. Long road ahead but many of you are miles ahead of me and I wish you all the best! Yes it can cause shortness of breath also chest pain. Thank you all!

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How's the nodule?

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michaeld1 | @michaeld1 | Aug 15 7:48am
In reply to @rstel7272 "How's the nodule?" + (show)
@rstel7272

How's the nodule?

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The mass has shrunk by half. The new nodule is the same. It’s not Cavitating that is good! The doctor is getting every CT scan she can. She’s looking at past nodules. She got me a new pulmonologist from Henry Ford she said he leads the pulmonary MAC doctors. We’re hoping next month the nodule goes away doesn’t get bigger.

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pfurcht123 | @pfurcht123 | Aug 16 4:23pm

Hello, I "only" have mac...:-).....THATS ENOUGH! but I started the 3 antibiotics and after about a month, any shortness of breath resolved. I haven't been able to challenge my aerobic capacity over the last 6 months, so moderate exertion can cause heavy breathing. Hope that passes as I am able to do more. Good Luck.

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