Columns

The ski instructor looked at me puzzled and took another look at our daughter. “What does she have again? She looks fine.” This is a common response when I first tell people Claire has cystic fibrosis (CF). Most people just see a vibrant 4-year-old when they meet her. What…

Isolation runs rampant in the rare disease community. As a byproduct, so does feeling alone. My journey with cystic fibrosis (CF) has been challenging, and I’ve often felt like I’m the only one fighting this disease. Thankfully, I found camaraderie through community right before my double-lung transplant five…

Before I wanted to be a baseball player, I longed to be a film director. This came from watching movies by Steven Spielberg and Robert Zemeckis when I was growing up. I even tried acting, playing the role of an orphan in the musical “Oliver!,” based on…

Organ donors are ordinary people who make an extraordinary impact. Each day I’m personally reminded of how one decision can change a life. My life was saved because of my donor, who made my double-lung transplant possible five years ago. Each breath I take reminds me of the…

That which is visible can more easily be defined than that which is not. Of course, while the contents of a book can be different from its cover, readers can usually gain a sense of what the book might be about just by looking it. The same cannot be said…

It’s Friday, and after a long morning of stressful clinic calls that included coordinating appointments, negotiating a telehealth option amid the ongoing COVID-19 pandemic, and asking for and hoping a prior authorization drops on my Trikafta (elexacaftor, tezacaftor, and ivacaftor) before I need the refill, I decide I deserve a…