The Long Ride with Cystic Fibrosis

The Weight of CF

I spent the first year of my life in the hospital, while my parents adjusted to the new reality of having a child diagnosed with a chronic illness.

My childhood was marked by several serious Pseudomonas infections that required frequent hospitalizations and additional treatments at home. By the age of 11, I was severely underweight. My parents did everything they could to help me gain weight, including making me drink high-calorie milkshakes every night. I absolutely dreaded them, but I knew they were essential to maintaining my health.

It became a vicious cycle. Because my body struggled to maintain a healthy weight, it was harder to fight off infections, which often led to me becoming sick again. As my health challenges progressed, I began overnight tube feeding through a nasogastric tube and later had a gastrostomy tube placed, which I relied on until I was 16 years old. Every night, I received approximately 1,500 calories to help me maintain a healthy weight.

At 15, I was diagnosed with cystic fibrosis-related diabetes (CFRD), adding another layer of complexity to managing my health.

Finding My Stride

Things started to shift in 2021 when I discovered endurance sports. I started running consistently, beginning with short, slow distances. Over time, I noticed my lung function improving and my CFRD becoming easier to manage. For the first time in my life, I felt strong.

In 2022, I began taking Trikafta. After finally finding my rhythm and feeling the best that I had in years, I was hesitant to start the medication. I had concerns about the possible side effects, the changes it might bring to my body, and whether it would be effective for me. Now that it's been a few years, I can say that it has been life-changing for me. Since starting Trikafta, I have not experienced any major lung infections or significant declines in lung function like I did when I was younger.

The Unseen Work 

Every day, I take several medications, perform respiratory physiotherapy with hypertonic saline to help clear mucus from my lungs, take antibiotics to keep chronic Pseudomonas infections under control, and carefully manage everything I eat with insulin and pancreatic enzymes due to my CFRD and pancreatic insufficiency. Every three months, I also attend routine clinic appointments to monitor my lung function, nutrition, and overall health. I need to carefully manage my hydration and electrolyte intake, especially when training. Beyond the physical challenges, CF also takes an emotional toll. Living with a chronic, progressive disease means living with uncertainty about the future. Even when I'm feeling my best, I can't help but wonder when the next setback might come. 

Better, Not Cured 

Most people see someone participating in endurance sports and assume my CF "isn't that bad," when in reality, staying active is one of the reasons I am able to manage my disease as effectively as I do. 

While Trikafta has been life-changing and has given me opportunities I once didn't imagine possible, it is not a cure. CF has already caused permanent damage to my lungs, pancreas, and liver that cannot be reversed. There will always be some uncertainty about how the long-term effects of both CF and Trikafta may shape my health in the future. Even so, I am grateful for every opportunity I have to run, ride, and move my body without limitations. But many people living with CF are still facing significant challenges every day. Your support can help fund vital research, care, and advocacy so that more people can experience the same hope and possibility that I have today.