New Diagnosis of MAC/MAI & I'm scared

@induh66 Hi. I am glad your procedure went alright. I didn't want to say anything until after your bronchoscopy. I had one done in 2005 by a sadistic doctor who did NOT give me the twilight sedation for mine. She only gave me 5 mg of valium (which did nothing). It was the most horrifying experience I have ever had, and vowed that I would rather die than have another bronchoscopy. She had two orderlies hold me down while she did the procedure. She jammed the scope down into my lungs with such a force that it hit the end of my lung with a thud. I thought I'd go through the roof! Plus, the tube going down into your bronchial tube filled the entire space so that I had the sensation of suffocating, that is the point where the orderlies had to pin me down. I did not know at that time that you should be put under for that procedure. I hate to say this, but I think she did not like white people and took it out on me. I say that because my gut feeling felt that when I first consulted with her. I should have listened to that feeling and gone somewhere else. So, just clarifying for anybody getting a bronchoscope; twightlight sedation is supposed to be induced.

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@induh66 Hi. I am glad your procedure went alright. I didn't want to say anything until after your bronchoscopy. I had one done in 2005 by a sadistic doctor who did NOT give me the twilight sedation for mine. She only gave me 5 mg of valium (which did nothing). It was the most horrifying experience I have ever had, and vowed that I would rather die than have another bronchoscopy. She had two orderlies hold me down while she did the procedure. She jammed the scope down into my lungs with such a force that it hit the end of my lung with a thud. I thought I'd go through the roof! Plus, the tube going down into your bronchial tube filled the entire space so that I had the sensation of suffocating, that is the point where the orderlies had to pin me down. I did not know at that time that you should be put under for that procedure. I hate to say this, but I think she did not like white people and took it out on me. I say that because my gut feeling felt that when I first consulted with her. I should have listened to that feeling and gone somewhere else. So, just clarifying for anybody getting a bronchoscope; twightlight sedation is supposed to be induced.

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Oh my gosh Terri! My mom had an AWFUL experience, felt she was being waterboarded and has sworn she will never do it again, but NOTHING like that! I cannot even fathom!!!!!

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Ha ha! I spoke too soon earlier. I breezed through the bronchoscopy on Tuesday, that evening and the next morning. Quite a bit of coughing but no sore throat. By Wednesday afternoon I felt sick and continually got worse over the next couple days. Just all-over aches and pains, no stuffiness or sore throat, mostly bone pain. Ended up in the doc office with a viral infection and PA put me on steroids for 5 days. Finally feeling a little better this morning. Don't know if I picked up a bug at the hospital or if it was already brewing before the scope. It was nasty whatever it was. While I was there, I was told the initial cultures were clear, but as you all know, it is the fungal report that is the key. He is sure I have it so, just have to wait for confirmation then referral to ID.

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@laura34 The advantage of having an ID doctor is that MAC is an infectious disease. An ID doctor will know (should know) more than the pulmonologist in terms of best treatments for MAC. Most pulmonologists don’t have MAC as a specialty. My pulmonologist and my ID doctor work together on my behalf. (Two heads are better than one!) (Irene5)

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