Columns

“We could go to the beach,” my mom says as the two of us sit on her screened-in porch in Alabama. It’s spring break, and because I’m picky about who can stick me with a needle, I’m at my parents’ house to get my port flushed by my regular nurse.

If I didn’t have cystic fibrosis (CF), I’d be rich. This thought has crossed my mind many times throughout my adult life. While I can’t prove I’m right, I know I’ve certainly spent an absurd amount of money on CF-related expenses. Living with CF has had many physical,…

“Everything will be fine. You just have to stay positive.” Ever heard this idea while dealing with a chronic health condition? If so, you’re not alone. Born with cystic fibrosis (CF), I’ve had a life filled with difficult health challenges. Contrary to popular belief, my symptoms…

My husband and I sit in the same waiting room we did years ago when our daughter, Claire, was a newborn. A similar sense of anxiety washes over me as I watch for her pulmonologist to emerge from the operating room. Claire was undergoing a bronchoscopy, a procedure to…

Six years ago, I had a double-lung transplant because of severe cystic fibrosis (CF). I found the process traumatic, mostly because I didn’t feel prepared. I wish someone had taught me all the things I learned during that season of my life. To help others on a transplant…

The day my children entered the world I felt responsible for their future path in life. As they have grown, I’ve helped them learn age-appropriate skills to hopefully enable them to be independent, successful adults. Like most parents, I teach my kids the basics, such as how to walk, use…

Last year, we had a big health scare in our family — but for the first time, it wasn’t about me and my cystic fibrosis (CF). My mom was diagnosed with lung cancer. It was found early and by accident. She had a face and neck CT scan done…

One of the “pleasantries” of life with cystic fibrosis (CF) is navigating cystic fibrosis-related diabetes (CFRD). I’ve been periodically dealing with it since the summer of 2007. For the last two and a half years, though, it’s stayed with me like an unwanted memento. As I…

Born with cystic fibrosis (CF), I’ve been told my whole life that there’s a number on my head. I’ve written about my beef with life expectancy before, but to sum it up quickly, thinking about death and dying is normal for me. Mortality is a common topic of…

Imagine getting a $2.5 million hospital bill within days of putting in notice to quit your full-time job. That was the exact scenario I faced in February 2019. At that time, my daughter, Claire, had just been born with cystic fibrosis (CF) and spent 68 days in the hospital.