Life With CF is Not a Sprint

For those of us without a medication that targets our cystic fibrosis mutation, it's important to remember that our life with CF is a marathon.

| 4 min read
Jerry Cahill Headshot
Jerry Cahill
Jerry-Cahill-Running-Team-Cahill

There has been a lot of progress in treating CF lately with the introduction of ivacaftor (Kalydeco®) and the combination therapy, ivacaftor and lumacaftor (Orkambi™). For some, these CFTR modulator drugs attack the root cause of CF, and the results have been amazing. I think this has led many in the CF community to count on a quick fix for their CF, focusing on their mutation and waiting for a blockbuster drug to give them good health.

Don't get me wrong -- knowing your CF mutation is important. But it doesn't have to be the sole focus of life. In fact, it absolutely should not be. If you're not one of the fortunate ones who benefit from the CFTR modulators available, you have to put the work in every day to maintain your health. In that way, CF is a marathon and not a sprint.

Much like training for a marathon, life with CF includes continual planning, work and discipline, coupled with twists, turns and opportunities to re-invent yourself.

I was diagnosed with CF in 1967 at a young age. At the time, not much was known about the disease. My doctors told my parents I wouldn't live past my 16th birthday. Based on that, my parents believed that the quality of my life was just as important as the quantity of years. We followed the medical protocol of that era, but my parents also wanted me to “be a kid,” which meant roughhousing with my three older brothers and playing on their sports teams. This combination of following my treatments, while doing what I loved, has served me well.

As I grew up, I realized that there was no quick fix that would result in good health. I followed daily goals to keep my body, mind and spirit healthy, including paying attention to nutrition and exercise and making smart choices in my work and social circles.

Jerry-Cahill-Running-Team-Cahill

For me, being active and participating in sports have helped shape me into the person I am today: competitive, disciplined and determined. Some people may view exercise as a luxury, but, when you have CF, exercise isn't optional. When I started running, I couldn't jog even once around the track, but with dedication and training, I ran competitively in college. I have even run marathons as an adult. You don't need to run competitively, but I can't stress enough the importance of going outside and opening up your lungs. Compete with yourself to breathe!

It hasn't always been smooth sailing. Most days are wrought with obstacles, but I haven't let them deter me. Instead, I view them as catalysts to live life to the fullest. And yes, there are times when I struggle to stay medically compliant. I am human, and I can promise you that exhaustion and fears have visited me.

Jerry-Cahill-Race-Oxygen

When I face challenges -- and, trust me, I've had plenty -- I approach them as if I took a spill while running a marathon. They're just temporary setbacks. I look for the solutions and adjust accordingly.

I would never turn down a cure for CF. But for many of us with CF, our reality isn't the sprint of a blockbuster drug. It's the marathon of relentlessly striving for the most awesome life we can live. The best is yet to come ...

Jerry-Cahill-You-Cannot-Fail

 

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Topics
CFTR Modulators | Fitness
Jerry Cahill Headshot

Jerry was diagnosed with cystic fibrosis in 1967 at the age of 11. Currently a CF Ambassador at the Boomer Esiason Foundation (BEF), Jerry leads its scholarship and grants division and is the founder of Team Boomer -- the athletic arm of BEF dedicated to encouraging exercise among CF patients while simultaneously raising money for scholarships. He has also started the program You Cannot Fail, which includes apparel, a website, an autobiographical coffee table book, and two children's books. On top of all of this, he records educational podcasts and videos and encourages other people with CF to share their stories on Club CF. He has completed two 500-mile “Bike to Breathe” bike tours. Jerry believes that exercise is the single most important thing in his life that keeps him healthy with CF. Follow Jerry on Jerry Cahill's Cystic Fibrosis Podcast.

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