Columns

What is victory for us? I know we crave a cure above all, but what is attainable in the meantime? When I began this column, titled “Victorious,” I viewed victory as a single objective: positivity. Living joyfully despite this horrific illness. And yes, I still think that is…

“A childhood disease.” That’s what they called cystic fibrosis back in my day. (Man, that makes me sound old. But that’s kinda the point of this column.) A childhood disease yet we grow old so fast. Scarred souls, battered bodies. Maybe death before our…

Cystic fibrosis is a complicated disease. As patients, we are taught that mutations in our cystic fibrosis transmembrane conductance regulator (CFTR) proteins are what lead to many of our symptoms and disease trajectories. However, research has shed light on many other proteins and biological processes…

When I first met my lung transplant surgeon, she remarked that cystic fibrosis patients have a great post-transplant life expectancy because we tend to be best prepared for it. We know how to shovel pills by the handful into our mouths two to three times a day.

Having cystic fibrosis makes life sometimes stressful, sometimes lonely, sometimes painful, and oftentimes scary. But it can also make life seem more valuable, brighter, more optimistic, and more fun. Figuring out how to balance the good and the bad, and come out from tough situations on the positive end can be challenging,…

Military hospitals handled most of my cystic fibrosis (CF) care. Many members of the military worship pain (“Get some! Rub some dirt in it, hooah!”), and assume you do, too. CFers inevitably encounter intense pain throughout the treatment of their disease.

Kathleen belaying Brad as he climbs. Not quite near the top yet. (Courtesy of Kathleen Sheffer) There are times I feel especially mortal. Such as when I’m feet from the top of a rock climbing wall, and I realize I’m relying on a single rope…

Second in a two-part series about the role of anger in a CFer’s life. Last week, I wrote about a lifetime of anger because of cystic fibrosis. The fury boiled over during an episode of ICU psychosis and septic shock. I finally…

First in a two-part series about the role of anger in a CFer’s life. Life as a child with cystic fibrosis was grueling. I had frightening surgeries, hours of treatments each day, a cluster of never-ending infections ravaging my lungs and digestive system, and…

Mom and I had flown to Denver to meet a specialist and strategize treatment for my nontuberculous mycobacterium. Part of the clinic visit concerned treating my barren appetite and nonstop nausea. We’d tried nearly every anti-nausea prescription by then, and…