Having Cystic Fibrosis means a life of many unpredictable ups and downs. It also means hours of commitment to treatments and a healthy lifestyle. This can be overwhelming, especially when transitioning to young adulthood. My life has been nothing short of twists and turns, but thanks to amazing research and Trikafta, my health is trending towards more ups than downs.

As a kid, my life was full of so many fun and normal routines. I went to school, I was in dance classes, and hung out with my friends often. To the naked eye, it looked as though I was a typical peer.

What many people didn’t see, was the hours of treatments I did when I woke up and before I went to bed. They also didn’t see the hours I was awake coughing in the night or all the pills I had to take. Luckily, my family and closest friends knew these truths and created the best support system that made all of this feel normal to me.

As a kid, I kept up with my dance team and was able to dance competitively, even with Cystic Fibrosis. I loved my childhood and am so thankful for all these things I was able to do.

When I reached my teenage years, I began to have some lung infections that placed me in the hospital. This was very scary to go through at such a young age. This is also when my “invisible disease” became a little less invisible.

As I entered college at the University of Colorado, Boulder, I knew that my journey would be a little different from other students. Although, I could not have predicted how different it would be.

The first year there, I was able to walk to classes and go to sporting events just like everyone else. I also continued to have to make sure I got in all my treatments and live a healthy lifestyle. This meant getting plenty of sleep and taking care of my health, which many students at this age have the luxury to ignore to some extent.

During my second year of college, my lung function dropped in half. Despite extensive investigation, there was no explanation for why this happened. This took away my ability to walk to classes, put me in the hospital for several weeks at a time and left me on full time oxygen. Talk about my disease becoming visible.

This is when the conversation around a double lung transplant began. I was terrified. This is not where I had pictured myself as a college student. Despite my fear, I jumped in, ready to see what was next for my health.

I spent 6 weeks at Duke University doing pulmonary rehabilitation and going through pre transplant evaluations. While I was there, I met several people in similar journeys and realized how I was not alone and how strong the CF community is.

At the end of my 6 weeks, the team and I decided to hold off on putting me on the active transplant list because they knew of a new medication showing promising results. This medication was called Trikafta. While I was not on the active list, I was still approved for transplant and ready to be listed if there were any shifts in my health.

After coming home from Duke, I was able to finish my last year of college and graduate with my class. I was not able to get a full time job after graduation as I continued waiting for either transplant or Trikafta to save my life. That fall, I got a call that would change my life.

I was able to get early access to Trikafta in September of 2019 and within 4 weeks, my lung function went up 14%. I was able to get off full time oxygen and gained a lot of strength.. This changed the trajectory of my life.

Now, 5 years after starting this medication, my lung function is up over 20%. I was able to go back to school and get my masters degree and hold a full time job as a Special Education Teacher.

There are many other things that I am able to do now that I never dreamed of such as going on hikes, getting married and thinking about starting a family. Everyone with Cystic Fibrosis deserves this opportunity!

While Trikafta has changed my life for the better in so many ways, my lung function is still in the 50s. There are also many people who do not qualify for this medication. This is why continued research for Cystic Fibrosis is so important. We need to continue until CF stands for Cure Found.

By Hannah Pfeiffer