The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.
It took a lot of self-advocacy — and a lot of medical testing — before I received a diagnosis of cystic fibrosis-related metabolic syndrome. Fortunately, my parents supported me as I went from specialist to specialist and finally got my diagnosis.
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I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.
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My daughter, Lauren, didn’t know that having a lung transplant would greatly increase her risk for cancer until it was too late. Her death has taught me how important it is to know the health risks faced after transplant and our need to advocate for ourselves.
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My mom was always my biggest advocate and most selfless caretaker, but she went above and beyond when she also took my friend under her wing.
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In the 26 years since my double-lung transplant, I’ve lived through cancers and other post-transplant complications. It’s been difficult at times to remain positive, but I won’t give up. I’m a fighter.
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I had double-lung and liver transplants 16 years ago. Although nothing is guaranteed after transplant, here’s what I’ve learned maintaining my health after transplant.
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Since my kids were born, I’ve had two lung transplants and spent months in the hospital at a time for cystic fibrosis complications. It’s just as hard for my kids to go through as it is for me, so we make sure we talk about my CF openly as a family.
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The road to recovery after a lung transplant can be long and arduous. It took me awhile to appreciate all the benefits, but I am blessed with the ability to breathe and a new-found confidence that has emboldened me to try new things.
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I’m still trying to define who I am after a double-lung and liver transplant five years ago. Although I am much healthier, I sometimes still struggle with my physical and mental health, and I don’t know what I want to do next in my life.
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I underwent liver and kidney transplants in 2021 after a successful lung transplant in 2012. For a number of reasons, the recovery from second transplant was much more difficult.
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I resisted being listed for a lung transplant; but now, almost six years later I’m thankful — especially to my donor — for my new life.
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A life with cystic fibrosis taught me how to be sick. After a lung transplant, I had to learn how to be well.
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In my experience, the best way to support a loved one with cystic fibrosis is to listen closely and remember the details of his or her most common treatments and complaints.
