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Growing up, one of the worst parts of having cystic fibrosis (CF) was the gross orange cocktail I had to drink as part of my annual oral glucose tolerance test. This nightmarish, faux sports drink is full of glucose and is used to screen for diabetes. For years,…

Because I was born with cystic fibrosis, my body has always operated differently from others. Most people don’t understand what I go through daily, and it was exhausting to explain myself with failing lungs. Since my double-lung transplant seven years ago, I’ve had the capacity to educate others…

Today I turned 54. My birthday doesn’t come with a party theme or a cultural rite of passage. However, for someone with cystic fibrosis (CF) like me, it’s a quiet revolution. When I was diagnosed, the average life expectancy was 12 years old. For me, 54 isn’t just a…

A few weeks ago, in a remote corner of North Carolina, I turned 30. My parents and I were staying in a rental cabin surrounded by towering tulip poplars and majestic oaks. Situated in a corner of a property aptly called Firefly Cove, we excitedly waited for the sun to…

I’ve always carried a heavy purse. Stay with me here. Years ago, when I was waiting for a double-lung transplant, my mom would often accompany me to my doctor appointments. She’d graciously offer to carry my bag, but almost always commented on the weight. “What the heck do you…

Living with cystic fibrosis (CF) has required various hardware to be placed in my body, including a port-a-cath in my chest. This allows me to do blood draws and receive medication in the easiest way possible. Although my journey with this device has been like a roller coaster, I’m…

Like many others, I never want to feel like cystic fibrosis (CF) is holding me back in any way. Yet the condition has shaped many of my experiences and taught me so much, including resiliency. At different times — mostly during periods of stability and complacency — I’ve forgotten…

Before my double-lung transplant eight years ago, I notoriously sacrificed my health for my job. I attempted to keep up with the able-bodied people around me, ignoring my limitations, and pushing past what my body could endure. And I paid the price for it. I learned the hard way…

When I was 17, my appendix ruptured, requiring surgery. Because I had cystic fibrosis (CF), I was admitted to the pediatric CF unit. It was the late 1980s, and most CF patients were still children. Every room had two beds. While the staff tried to give us separate rooms,…

I felt like I’d received a roundhouse kick to the head while drunk. My head was pounding and I couldn’t think straight. Words were difficult to form. Sentences seemed impossible. This might sound like the result of a wild night of partying, but for me, these were actually signs of…