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.
Dr. Jennifer Taylor-Cousar is passionate about bringing attention to health inequities in cystic fibrosis. By partnering with the CF Foundation, other organizations, and the CF community, she believes we can work together to create equitable health outcomes for everyone with CF.
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Being in and out of the hospital and unable to recognize my own body was taking a toll on my mental health. But after my liver transplant, my family stuck by my side and helped renew my positive outlook on 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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After two kidney transplants and one double-lung transplant, I am currently doing dialysis treatments as I wait for my third kidney transplant. Keeping a positive attitude and having friends and colleagues who support me have helped me adjust to life on dialysis.
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I recently was diagnosed with a type of attention deficit hyperactivity disorder, which helps explain why I sometimes didn’t keep up with daily care. By taking ADHD into account, I’m managing my cystic fibrosis better.
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Being diagnosed with cystic fibrosis-related diabetes shortly after a lung transplant was difficult. But, working with my doctor helped me create a strategy to make it easier.
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Because my daughter's bowel perforated when she was a newborn, she needed to have surgery to temporarily reroute her stool so that it was collected through her abdomen into an ostomy bag. Those grueling days of ostomy care -- sometimes as often as every hour day and night -- were some of the darkest days of our cystic fibrosis journey.