At times, my pediatric CF care team told me about the possible negative outcomes of my cystic fibrosis. Their gentle support helped prepare me for unexpected good health, and is one reason why I was able to qualify for the Boston Marathon.
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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.
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.
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.
After my daughter’s cystic fibrosis diagnosis, I knew I still wanted more than one child. But, the journey trying to conceive my second child was stressful and emotional.
I was determined to make my dream of becoming a mother a reality despite the potential risks that pregnancy can cause for people living with CF. It certainly wasn’t easy, but the challenges of pregnancy and CF were rewarding in the end because I now have two wonderful girls who call me mom.
Working as part of a cystic fibrosis care team gives me the opportunity to provide the type of personal care I’m passionate about — I just hope my patients understand how much we are invested in their well-being.