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How is everybody doing?

MAC & Bronchiectasis | Last Active: Sep 20, 2017 | Replies (153)

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@cld120

Terri/@windwalker, this is Carolyn (59 yo diagnosed with MAC and mild bronchiecstasis earlier this summer.) I saw an ID doc at Mayo a couple weeks ago and start on the "Big Three" tomorrow. Actually, Azithromyacin this week, adding Rifampin and Ethambutol each of the following two Monday's. I am trying to stay positive but am quite anxious about starting a minimum of 14 months of this regimen. Anyway, I've since gotten all my baseline tests, a pneumonia shot, started probiotics (Florastor) & had an endoscopy to assess GERD. Also began a routine of Albuterol inhalant, a nebulizer and Aerobika twice daily.

Here are a couple questions:
I have never produced phlegm or mucous.
How will we do sputum tests? (How often are they done, usually?)
Do you have to have a bronchoscopy each time you need one?
Thanks!

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Replies to "Terri/@windwalker, this is Carolyn (59 yo diagnosed with MAC and mild bronchiecstasis earlier this summer.) I..."

I had a bronchoscopy.  It was no big deal.  They almost put me out so I did not feel anything.Jan

Jan, I had a bronchoscopy in 2005 and was NOT put out, I believe the dr did that intentionally to be sadistic. There is more to that story that I won't go into now. But I swore I'd rather die than go through that again. I ocassionally go to a lung transplant support group; those transplantees have to have one every three weeks right after their transplant. They all said it is a piece of cake because they do put you under. Wish I had known that that is how it is supposed to be done!

Hi Carlyn. As per what Terri said about 'FORCED SPUTEM' procedure; I was curious why they are not doing that first before doing something as invasive as a bronchioscope? I have been going to the Mayo for almost five yrs now, and they have never done a bronchioscope on me. I have had the forced sputem test where they have you breathe in a high level of sodium chloride (same as high salt content saline) that usually brings sputum up. I would ask my dr why they are choosing this route and by-passing the saline before doing the scope. It is just a phone call to ask...... has anyone else had this situation?

I had a bronchoscopy in late May to biopsy nodules and an area that looked like a tunnel with fuzz in it which turned out to be MAC. (This was done because of a questionable CT scan.) I was quite anxious about the bronchoscopy when nurses explained I had to be awake so I could follow the doctors instructions. First, the pulmonologist spent ~10 minutes spraying numbing solution down my nose/throat, which he urged me to swallow. Then he threaded a slender tube down my nose (THAT I DID NOT FEEL), then down my throat to the lungs. The nurses explained that I had to be awake to "sing" which opened the lung valve (that normally closes when food or anything foreign nears). As soon as it was in, on the 2nd try, he told the nurse to give me Fentenyl through the IV. I don't recall anything else. The only reason I knew what would take place is because I told the nurses how freaked out I was by this procedure. I did insist on them calling my doc to get permission to take a xanex, which helped!

Good morning Carolyn! I am so glad to hear that your bronchoscope was not a horrifying experience. This will help others who may need one in the future for the first time; to not be so fearful. Thank you for sharing that. - Terri M.