31 Days of CF: The CF Community Is a Vital Part of My Well-being

Photo courtesy of Heather McCoy

Day 17 of 31

This is Heather McCoy’s (@heather_mccoy3) story:

I was diagnosed with cystic fibrosis (CF) at 7 weeks old on June 3, 1992. I tried to have a normal childhood, but I was always very sick. It felt as if I had grown up in the hospital because I had so many admissions. But the hospital is where I developed close bonds with the many nurses and doctors there.

Over the years, I was able to hold off having a double-lung transplant until I was 20 years old. In 2012, I had a double-lung transplant at the Duke University Health System. Going through the transplant process was one of the hardest things I have ever done, but it was so worth it.

Growing up, I wanted to meet someone who could relate to me. I made one CF friend through a pediatric pulmonologist we both shared, but I didn’t yet belong to a broader CF community. When I began going through my transplant phase, I started meeting more CF friends online, and I finally felt surrounded by people who understood me. That is how I met some of my greatest friends.

When I went through the transplant process, I was able to connect with others in person. Having access to the CF community is crucial to my fight, because it helps me feel less alone.

I had a second double-lung transplant in 2020 due to chronic rejection of the first transplanted organs. I faced a series of complications, and I had to relearn a lot. But it was fuel to make me work even harder.

I am a musician, writer, and exercise physiologist, and I’ve begun to figure out my purpose in life more than ever before. Going through all of these health experiences has shaped me into who I am today. I don’t like cystic fibrosis, but I am not ashamed of it, either. Everything I have gone through has allowed me to grow as a person. I am more than just a cystic fibrosis patient — I feel empowered from having it.

Cystic Fibrosis News Today’s 31 Days of CF campaign will publish one story per day for Cystic Fibrosis Awareness Month in May. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofCF, or read the full series.