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When people think of cystic fibrosis (CF), colon cancer usually isn’t the first thing that comes to mind. But for those of us living beyond what used to be the limits of this disease, it’s become an important and very real concern. Thanks to advances in treatments,…

It’s the night before another pulmonary clinic appointment with my cystic fibrosis (CF) care team, and my brain fights against sleep. It’s a phenomenon familiar to so many of us with chronic illness: medical anxiety. Nothing is wrong; I haven’t been experiencing new symptoms. The last round of…

It was the middle of the night when I found myself in an Uber with my dog Ruby. I was traveling through an area where, over 10 years ago, I would’ve been hanging out with friends without a care in the world. Now, I was bringing this small dog with…

Because I’m living with cystic fibrosis (CF), nutrition is more than just a personal choice; it’s a vital part of managing my health. With CF, malabsorption of fats and fat-soluble vitamins makes it challenging to gain and maintain weight. It also results in vitamin deficiencies. And while…

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…