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Adult Cystic Fibrosis (CF): Share your story & connect
Adult cystic fibrosis (CF) is a genetic condition that can cause multiple health complications, such as lung damage, liver disease, nutrient malabsorption, cystic fibrosis-related diabetes, gastrointestinal issues, bone disease, male infertility and others.
Finding out that you have CF as an adult often is a long journey of medical appointments, testing and searching for answers. You may have questions and likely have a story to tell.
This is a welcoming, safe place where you can meet people who know first-hand about living with a CF as an adult. Together we can learn from each other and share about challenges and triumphs, setbacks and the things that help.
Pull up a chair and introduce yourself. When were you diagnosed and how are you managing today? Got a question, tip or story to share?
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Celebrated my 78th Birthday yesterday! It's a milestone I never thought I would reach, but I'm truly grateful for every Birthday I get to celebrate... and very grateful to the medical team at the Mayo Clinic for my continued care. Despite CF and a host of other stuff, I'm also enjoying life!
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1 Reaction@blashatw As far as medications, my primary, and the only prescribed medication (for my lung stuff), is Trikafta. In addition to that I take a prophylactic 250mg dose of Azithromycin three times a week. In spite of that, I do get periodic infections -- most often Achromobacter -- and for the most recent one, my CF doctor put me on a course of Bactrim. For more serious infections (I had one a few months ago), I was on round-the-clock IV treats with a stronger antibiotic. That was a VERY hard thing to endure; my wife had to administer the IV treatments and neither of us got very much sleep for 10 days. At the end of that time, I was also in distress because of fluid retention and had to go to the ER. Don't want to do that again, but I'm sure I will ...comes with the territory. I will say, however, that my exacerbations are much less frequent since my CF diagnosis when I was put on Trikafta.
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1 Reaction@ckscoville
Hi. Glad you are having relief with your new treatment. I have made a note of this.
If my current treatments don't work, I will definitely tell my doctor what you are taking. Please take care .
@blashatw The medications I've been treated with are based on the specific bacterial infections that I've been suffering from. In my case, my lungs are apparently "colonized" with Achromobacter, a stubborn and hard to kill bacteria. I lean on whatever medications my pulmonologist and/or infectious disease specialist recommend, based on my sputum culture.
@colleenyoung I’m 68 and like others here I have gone through years of testing and 3 positive sweat chloride tests. My genetics don’t really make sense, but I think that’s because we don’t entirely understand how genes can affect us and what some sequences mean. I have mutations that shouldn’t line up, but that’s what seems to be happening. I also have a somewhat rare sequence of MTHFR that leaves me more open to epigenetics so maybe that’s what happened. CF Foundation mentions genetic nonsense (I think that’s the term they used) and I think that is an indicator that we are still in the infancy of genetics/ metabolics and environmental affects. It’s fascinating so far and that makes it less scary for me. Thanks for being here!