I have enjoyed pretty good health, so I have tried to keep my cystic fibrosis on the back burner while I pursue my passions. Sometimes, though, CF intrudes, reminding me that it’s still here.
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Advances in cystic fibrosis care have been life-changing for me, and I’m grateful to breathe easier with a CFTR modulator. However, I began to experience new issues in the past few years, and I am left wondering if it’s a side effect of the CFTR modulator or something else.
My son, Keith, was diagnosed with pancreatic cancer after an initial focus on CF as the cause of his health issues. With people with CF living longer, we need more awareness of pancreatic cancer in CF individuals due to the potential increased risk.
Life with cystic fibrosis can come with many recovery days. But it’s hard for me to avoid feeling guilty when I need time to rest and recharge. Working harder to be more productive and make up for the time I lost at work and with family while resting often leads me right back to my couch and needing to take another day to rest.
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.
Since my daughter, Kinley’s, cystic fibrosis diagnosis, I have come to rely on her care team. We have become a true team in Kinley’s care.
Although I admired bodybuilders when I was growing up, I thought pumping iron and building muscle was impossible with cystic fibrosis — so I didn’t even try. After a hospitalization, my passion for fitness was rekindled and I discovered I could build muscle mass and improve my health.
Growing up, I always tried to stay active, but it wasn’t until I was hospitalized that I decided martial arts would be the outlet to keep me healthy and boost my confidence.
We’re highlighting three creators who are helping raise cystic fibrosis awareness. They’re voicing the variety of ways that people experience the disease by sharing a part of their life through their works.
My wife and I knew that following our dream of having children would be difficult, but we would do whatever it takes to grow our family. Despite the challenges we’ve experienced on our in-vitro fertilization (IVF) journey, we will continue to fight to make our dream a reality.