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.
For those of us who can’t take modulators, it can sometimes feel like you’ve been left behind. But I have found hope and motivation by participating in clinical trials.
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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.
