Columns

I stared at the screen in disbelief. My lung function had declined more than 20 percentage points. I was stunned. I had undergone hundreds of pulmonary function tests before, and even though I wasn’t feeling great, none had shocked me like this one. I knew I’d need antibiotics, but…

Sitting in that brightly lit hospital room, I was a bundle of nerves, anxiously waiting to hear what the doctor had to say about my young daughter, Jasmine. You know that feeling: The heart races, and a heavy pit churns in your stomach. When the doctor knocked on the door,…

I recently attended a webinar hosted by the Gift of Life Donor Program focused on post-traumatic growth. It provided terminology for experiences I’ve been navigating but couldn’t quite articulate. The emotional landscape of receiving an organ transplant, as I have, is complex, and I now realize that growth often…

The year is 1955, and a group of parents, including the late Doris Tulcin, decides to create an organization dedicated to improving care for children with cystic fibrosis (CF). That organization, the Cystic Fibrosis Foundation (CFF), continues to thrive today. The year is 1989, and Lap-Chee Tsui, Jack…

Calm, cool, and collected: These are just a few words that describe how my husband, Chris, approaches my various health crises. I always knew my husband was incredible, but I’ve witnessed his strength on a deeper level over the past few months. My health challenges have made this a…

Living with cystic fibrosis (CF) means navigating a complex medical journey that can feel isolating, even when the clinical care is excellent. When I faced the life-altering decision to pursue a double-lung transplant, I discovered the power of community support. Through both national resources and local connections, support groups…

Ironically, I thought about the subject of this column — the importance of rest — a couple of weeks ago while running in Seattle, a city known for its frequent rainfall. I was preparing for the Virtual Marine Corps Marathon 10K (MCM10K), which was scheduled for the following day. I…

Living with cystic fibrosis (CF) is a daily balancing act of medications, fatigue, breathing treatments, and managing my energy levels. Some days feel manageable, and others feel like I’m climbing a mountain with no summit in sight. But for me, a dog (or two) has always been a source…

I’ve always had to play detective when it comes to my health. Running through a list of checks and balances, I can typically determine what’s going on in my body. After living in it for 38 years, one could say I’m an ol’ pro at connecting symptoms with which…

Cystic fibrosis (CF) has a way of stripping one’s agency and limiting control over circumstances and the future. It is difficult, isolating, and can lead to dark places. For me, advocacy has been a balm that tempers feelings of anxiety, hopelessness, and isolation. Over the years, I’ve served…