People always say kids are resilient. I used to nod politely, not really knowing what they meant. But then I had Jasmine, my daughter with cystic fibrosis, and life rewrote the definition right in front of me. At 4, she already knew her routines better than most adults.
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I’m no stranger to frigid temperatures and dark days, as it often feels like the tundra here in Vermont. As we approach the winter solstice, I’m reflecting on the symbolism of letting the light in after dark times. I was born in the wee hours of Dec. 22,…
Universal Health Coverage Day on Dec. 12 is a timely reminder of the critical importance of access to healthcare for everyone across the globe. The theme is “Unaffordable health costs? We’re sick of it!” This awareness day encourages world leaders to invest financially in protecting people’s health. The goal…
December’s Worldwide Food Service Safety Month resonates deeply with me as a double-lung transplant recipient living with cystic fibrosis (CF). Once-simple dining decisions now involve careful calculations regarding risk, cleanliness, and the invisible world of food-borne pathogens. Life post-transplant means being immunocompromised. The anti-rejection medications that keep…
I recently watched a film that depicted a harrowing scene between the protagonist, a prodigious graduate student, and his physician. In the scene, they sit in a sterile, halogen-lit corridor as the physician shares the devastating news that the student has amyotrophic lateral sclerosis (ALS). Much like cystic…
After my late daughter, Jasmine, was diagnosed with cystic fibrosis (CF) at the age of 2, the days started to run together while we figured out a shaky rhythm. I learned the quirks of a nebulizer’s hum, the best tricks for coaxing Jasmine to take her pills — mixing crushed…
I feel my breath catch in my throat. Short, shallow waves alert my survival brain that something is wrong. My heartbeat quickens, and my hands begin to sweat, with surges of energy coursing through my veins, almost like a cold chill. Every part of my body tenses, and a pit…
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…
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Recent Posts
- Trikafta helps cystic fibrosis patients reduce supportive treatments: Survey December 23, 2025
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- CF gene therapy 4D-710 shows signs of improving lung function in early trial December 18, 2025
- My late daughter is still teaching me resilience today December 17, 2025
- Small study finds GLP-1 drugs boost lung function in CF patients December 16, 2025