Columns

Five years ago, I got the call. If you’re in the cystic fibrosis (CF) community and have had a double-lung transplant, you know the weight of those words. You know how the terror and the relief collapse into a single moment after you hang up the phone. You…

Prior to my double-lung transplant eight years ago, I didn’t know anything about organ donation. While living with cystic fibrosis (CF), I hadn’t connected with others who had CF, either. I started to dip my toes in these spaces as I approached the transplant evaluation process, finding comfort in…

My sister, Alyssa, has been a frequent subject of my writing since she died in 2018 at age 29. Even when I wasn’t sure of myself as a writer, she was highly supportive of my burgeoning interest in the craft. After she died, I determined that writing, especially about grief…

For me, cystic fibrosis (CF) was extremely aggressive and relentless. Breathing was always a struggle, and I was constantly congested. Germs would set up shop, wreaking havoc on my airways. My days were filled with nebulizers and airway clearance treatments, and beginning and ending each day with both was…

When my daughter started elementary school, I wasn’t looking for help. I was just another mom on the sidelines of a soccer field, handing out snacks at birthday parties, and setting up carpool schedules. But in the routine of those early school years, something special grew — a community I…

Hitting the trails on one of my favorite hikes, I spent the day atop a mountain, lying in my hammock and gazing up at the bright blue sky. The warm breeze filled my lungs and sparked a sense of excitement. Up there, I was completely alone — no one was…

Last week, my parents joined hundreds of advocates on Capitol Hill in Washington, D.C. Along with others who have loved ones with cystic fibrosis (CF), they met with the staffers of senators and representatives from Kentucky. While there, my parents explained what CF is and all the medications…

When my late daughter, Jasmine, was 8 years old, she never wanted to miss a party. Even when her lungs felt heavy and her breath was short, she’d insist on putting on a T-shirt and jeans, ready for any adventure that awaited her. She loved birthday parties most of all…

At 54, I’ve lived with cystic fibrosis (CF) all my life. Five years ago, I survived a double-lung transplant. Along the way, I’ve managed CF-related diabetes (CFRD) and spent nearly two decades facing stage 3 chronic kidney disease. I’ve lost one kidney and rely on the remaining one. It…

We typically celebrate an anniversary, but when you live with a chronic health condition like cystic fibrosis (CF), your relationship to certain days on the calendar can be a bit more complicated. They may not be milestones to celebrate, but they can still serve as reminders. I’m thinking…