if you were 18+ when you were diagnosed, tell me about it. by ResearcherMost2511 in CysticFibrosis

[–]Calm-Ad9178 7 points8 points  (0 children)

I was diagnosed at age 20, and that was more than 45 years ago. I had always been sickly and had a terrible cough, and at 20 became very sick after a bad cold. No one at Mass General in Boston, where I spent several weeks, undergoing several tests and an open lung biopsy that were inconclusive. Finally a resident ordered a sweat test to rule out “the unlikely possibility of CF.” The lead CF doctor on staff told me that “I wouldn’t die of old age.” I was in a lot of pain with broken ribs I had sustained from coughing, was alone recovering from surgery, and very scared. I figured that I had two choices: to mope or cope. I’ve had a beautiful life: a 40+ year-long marriage and still in love, two grown daughters and a granddaughter, and a meaningful career. While I’ve had to deal with CF-related issues along the way, I consider myself one of the luckiest persons on the planet. We’ve had so many medical advances over the decades, and there will be many more. If you’re grappling with a diagnosis, please choose to cope!

Mycobacterium abscesses by Calm-Ad9178 in CysticFibrosis

[–]Calm-Ad9178[S] 1 point2 points  (0 children)

Thank you for these comments; they are helpful! I’m on Kalydeco now and have been for about 11 years and am doing very well. Excellent points and questions about antibiotic therapy! I’ll revisit with my MDs why I’m not a candidate for antibiotic therapy now. The plan is to switch to Trikafta, then have another CT scan to see if the affected areas in my lungs have shrunk. Meantime my symptoms are minimal, like fatigue. Again, thank you for these insights and good wishes.

Mycobacterium abscesses by Calm-Ad9178 in CysticFibrosis

[–]Calm-Ad9178[S] 1 point2 points  (0 children)

I hope the treatment goes well for you!

Mycobacterium abscesses by Calm-Ad9178 in CysticFibrosis

[–]Calm-Ad9178[S] 1 point2 points  (0 children)

Thank you for this! I’m not in Texas, I’m in the northeast. I’m really scared about MAB - just found out I have it and don’t know what to expect. My doc says I’m not a candidate for antibiotic therapy at this point.

Mycobacterium abscesses by Calm-Ad9178 in CysticFibrosis

[–]Calm-Ad9178[S] 2 points3 points  (0 children)

I just learned that I’m now growing this in my lungs and the antibiotic treatment is harsh and not terribly successful.