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New Cystic Fibrosis (CF) Diagnosis

MAC & Bronchiectasis | Last Active: May 13, 2023 | Replies (25)

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@ckscoville

Trikafta has definitely improved the bronchiectasis, and my infections have been less frequent. I've been hospitalized twice for lung infections since starting it almost two years ago, but that is a great improvement over what I was going through before. I've not been hospitalized for an infection for a year now. One of the nicest improvements is that I can actually lie down to go to sleep at night without a 30-40 minute spell of coughing stuff up before falling asleep. I'm also no longer using a SmartVest (although I had to stop using that because it was interfering with my pacemaker). My lung function did show a slight improvement at my last checkup in early January. As for your other question: I have never had to deal with MAC; I've had other infections to deal with, primarily Achromabacter.

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Replies to "Trikafta has definitely improved the bronchiectasis, and my infections have been less frequent. I've been hospitalized..."

I just found out that Achromobacter is a genus of nonfermenting Gram-negative bacteria under order Burkholderiales. Have you gotten better from this infection? What antibiotic did you use? I have Burkholderia cepacia. Not sure if they are the same kind of bacteria.

Thank you so much for the information. I wish you improved health. I will keep you updated. So much to think about.