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New Cystic Fibrosis (CF) Diagnosis at 73

Posted by Pug, Volunteer Mentor @ckscoville, Jul 27, 2021

Haven't posted here in a while. My bronchiectasis was not improving, despite my twice-daily breathing treatments (7% saline) and SmartVest. My pulmonologist at Mayo was curious about a cystic fibrosis variant, so he ordered a sweat test. To my surprise, that came back positive. So Mayo then ordered a DNA analysis from Johns Hopkins. After a number of weeks, that came back showing a variant of cystic fibrosis. Because of my clinical presentation, etc., Mayo Clinic has now diagnosed me as having cystic fibrosis! I've got to set some kind of record to be diagnosed with CF at the age of 73! In any event, I'm about to start Trikafta and would appreciate any advice if anyone else happens to be in my situation....

Interested in more discussions like this? Go to the Cystic Fibrosis Support Group.

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Pug, Volunteer Mentor | @ckscoville | Feb 13, 2023

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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sweethighland | @sweethighland | Feb 13, 2023
In reply to @ckscoville "Trikafta has definitely improved the bronchiectasis, and my infections have been less frequent. I've been hospitalized..." + (show)
Profile picture for Pug, Volunteer Mentor @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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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.

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kattyk | @kattyk | Feb 13, 2023
In reply to @ckscoville "Trikafta has definitely improved the bronchiectasis, and my infections have been less frequent. I've been hospitalized..." + (show)
Profile picture for Pug, Volunteer Mentor @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.

Jump to this post

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

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gina1645 | @gina1645 | May 13, 2023

I am 65 and on day 3 of Trikafta - diagnosed at National Jewish Health 6 months after going there for MAC Lung Disease tests/diagnosis/treatment plan.
I have two pathogenic mutations. Everything is ‘purging!’ Lungs, so sinuses and intestines … so so so happy I finally feel I will be well.
Are you still using this miracle med? Doing well? 🙏💜
Purple for CF Awareness month of May

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helen1000 | @helen1000 | 3 days ago

Any side effects taking CF modulator? I will take Alyftrek in April. I feel very curious about the potential side effects and EFFECTS, I had frequent pneumonia as an infant, but no any issue after 3 years old until I got MAC in 2022. I am diagnosed as CF related disorder and qualified for the modulator though. My digestive issue is wheat intolerance and my lung issue is BE/MAC infection. I also feel fatigue in most of my life. Other than those, I am totally fine.

As MAC brought me fatigue, I am hoping to return to work place after I take the modulator. Will it help reduce the fatigue? Thanks for any feedback!

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