CF In the elderly
I am newly diagnosed at 69 years old. I’m angry and happy and so emotional. Anyone my age with CF?
Hello @dlase,
Firstly, I am so sorry to hear of your diagnosis. That must be really hard to learn you have CF after so much time. We are here for you if you need support! Warmly, Janeil (cystic-fibrosis.com Team Member)
Hi! I actually have met several people diagnosed after age 50 locally but I haven't connected with anyone personally on here yet. If I hear of anyone I can connect you with I will reach back out here. I myself do not have CF but I have a daughter who is 5 with CF. I can imagine you have so many mixed emotions. We are here if you need anything!
Holly (Team Member)
I know it is shocking to get this diagnosis so late. I was diagnosed at 60 years old. Just turned 63. I
I was thrilled to have a diagnosis that answered all my life-long symptoms--that no one could ever explain.
There was no one (known) in my family history with CF and I am the only one of 6 children in my family that has it.
Trikafta was a game changer in my chronic cough and sinusitis--I have had 3 sinus surgeries with no explanation why I kept getting infections.
After I was diagnosed the CF doctor I was referred to apologized for all the missed opportunities that other doctors had missed to diagnose me.
But she states the awareness is improving. I don't blame anyone, actually. I am just grateful for the wonderful, young Dr. that thought to test me!
Unfortunately at our age people wouldn't even think of CF --because they would think it would have been diagnosed long ago!! lol
I have been glad for the diagnosis, because knowledge is power, I believe.
And, I am now getting help with continual evolution of my symptoms. Good luck! It will get better--just knowing what to expect
and how to manage the symptoms.
Mar GeneThank you for sharing your experience, Mar! I am so glad you can encourage and understand what people with late diagnoses are going through. Knowledge is power and I am glad you are getting the care you need. Warmly, Janeil (cystic-fibrosis.com Team Member)
wow! 60. Crazy. Did you have a lot of breathing and bathroom issues?
Hi Mar Gene,
I’m 69 and my doctors suggested I try TriKafta yesterday. I have a lot of questions about it!
I was diagnosed with CFTRD two years ago after my pancreatic cancer diagnosis. Cancer was caught early and I’m cancer-free now. But yes, so many emotions. My situation is pretty unique but I would love to share support. My sister has the same gene mutation as me and is about your age. She was diagnosed last year. I am sharing anything I learn with her.
Thanks for starting this thread,
Lorie
Hi Janeil,
I’m sorry to hear about your father. Let me begin by correcting the acronym to CFRD (related disorder). They discovered my CF after checking my genes. My mutation combination turns out to target the pancreas more than the lungs. It is very rare. I am only the 12th person on the registry. I hope this helps! I can get more specific info for you if you need it.
Best,
LorieSorry, I just saw this. Trikafta has been great for me. However, I was on Hormone therapy and with Progesterone I had an adverse reaction--a rash, that developed. So, I stopped that and have had no other issues with it. I have had a chronic cough FOREVER, along with sinusitis--and have almost been virtually coughless since starting the Trikafta and only occasional sinus complaint--but no infections. Rarely do I do the Vest anymore--no need.
