Columns

Living with a terminal illness such as cystic fibrosis (CF) can leave one asking questions like, “How would my life be different if my cystic fibrosis were cured?” Many of us would love to be cured of CF, but it’s difficult to approach the idea of what life would…

The release of the movie “Five Feet Apart” was being publicized during my pregnancy with our second child, Claire, who we’d just learned would potentially inherit cystic fibrosis (CF). I’d never heard of the disease until around the time of publicity blasts for the film. Suddenly, I was…

As a new columnist for Cystic Fibrosis News Today, I welcome you to “Living Beyond.” I come from a time when the life expectancy for someone born with cystic fibrosis (CF) was around 11 years. At that time, the only medicines prescribed to treat CF…

Throughout my journey with cystic fibrosis (CF) and a double-lung transplant, I’ve learned a thing or two about how medical trauma can affect mental and physical health. It’s been essential for me to realize that healing is a marathon, not a sprint, and that I need to be…

I am not comfortable peeling back the curtain and letting people see in person what my life is like with cystic fibrosis (CF). I know I write about some aspects of my life with CF, but the audience gets to move on after reading while I must continue…

“You’re such an inspiration!” the customer across from me said. I was standing behind the mosaic counter of the art gallery where I volunteered during my teenage years. Hearing this person call me inspiring made my stomach turn. I’ve always hated being called that. My mom, who is the president…

One of my favorite things about my mom is that she has really good taste in entertainment. I know it might sound shallow, but really, I love it. Growing up as an only child with cystic fibrosis (CF), I sat around watching a lot of television and movies. Because…

By the time I was 25, I had studied abroad three times and traveled Australia alone for eight weeks. I always had wanderlust and a level of independence that allowed for it. When our daughter Claire was born with cystic fibrosis (CF), I didn’t want to lose that part…

Cystic fibrosis (CF) often feels like a foreign friend since I got new lungs five years ago. Before that, CF was my constant companion; I always felt its presence. With aggressive lung disease, I was continually congested, did rigorous breathing treatments, and cleared my mucus-filled lungs 24/7. Other…

I could just smell it. I didn’t want to breathe it in; no one did. The air was as thick as the winter coat I was wearing. The smell stabbed at my skull like a lobotomy. My mom and I got off the boat, and she made sure I pulled…