Doctors diagnosed me at age 3, during a time when medical advancements for CF were limited. Back then, treatment options were few, and the general consensus was that people with CF rarely lived beyond their early twenties. Growing up with this knowledge shaped my perspective on life, pushing me to navigate a world where every breath and every challenge felt uncertain.

I was a relatively healthy kid for most of my childhood. I had exacerbations from time to time, but nothing major—until high school. That was when I was first affected by pseudomonas, a bacterial infection within my lungs that made managing my CF significantly more difficult and marked the beginning of more serious health challenges. 

I vividly remember the day it all changed. It was during a high school soccer game, and I struggled to catch my breath as I ran up and down the field. Before that, I was the kind of player who rarely came off the field, but that day was different—I had to leave the field multiple times to recover. I knew something wasn’t right and so did my parents. The next day my parents scheduled an appointment with my CF specialists at UNC to figure out what was going on.  

Tests confirmed that Pseudomonas was the culprit behind my breathing difficulties.  At that point, my FEV1 -- a measure of lung function that indicates how quickly and forcefully a person can exhale air in the first second of a forced breath-- had dropped drastically to around 40%.  To put that into perspective, my FEV1 had typically been 95% or higher.  The severity of this drop was alarming, and my doctors decided that the best course of action was immediate hospitalization. I spent a week in the hospital receiving IV antibiotics, a treatment plan designed to combat the infection and hopefully restore some of my lost lung function.  

As the years went on, the number of exacerbations grew, resulting in more medications to take, and my lung function continuing to decline. What once felt like occasional setbacks became a constant battle, requiring more aggressive treatments to keep infections at bay. Home IV antibiotics became a yearly routine to help maintain a deteriorating lung function.  Each exacerbation took a toll, making it harder to bounce back to my previous baseline. Managing my CF became a mental and emotional fight just as much as it was a medical fight.

In 2012, the CF community was given a new sense of hope with the FDA approval of Kalydeco—the first medication designed to target the underlying genetic mutation of CF. The downside was that it only benefited about 4% of those with the disease, leaving the majority still waiting for a breakthrough. But despite that limitation, it was a monumental step forward, proving that treating CF at the genetic level was possible. For me and many others, it reignited hope that more life-changing treatments were on the horizon.

Over the next few years, new gene therapy medications became available, but none were designed for my specific CF mutations. That changed in 2019 with the release of Trikafta—a breakthrough treatment that finally targeted my mutations and offered the potential for a significant improvement in my health.  At this point in my life, my FEV1 was hovering around 50%, and each exacerbation would cause it to drop to around 30%, making recovery increasingly difficult. Trikafta arrived at a critical time, offering a much-needed lifeline when I needed it most.

My experience with Trikafta has been nothing short of life-changing. Within just a few months, my FEV1 baseline climbed from around 50% to nearly 85%. Today, it hovers around 75%, a remarkable improvement from where I once was, and has been consistent the last several years.  Exacerbations have become rare, and I’ve been able to cut down on the number of daily medications I take. The impact goes beyond numbers—it has given me a quality of life I once thought would never be possible. I can run without constant coughing, hold long conversations without getting winded, and, most importantly, be present for my family in ways I once struggled to.  

The crazy part about all of this is that my journey is actually mild compared to many others.  I don't want to downplay my journey--it's been both emotionally and physically challenging.  Each person with CF experiences their condition differently, as every CF mutation is unique. Some share similarities with mine, while others face far more extreme challenges.

Regardless of where each person falls on that spectrum, one thing remains true: every donation received helps fund the research and medical advancements that can ultimately change lives, just like Trikafta changed mine! While it is not a cure and I still face daily challenges with CF, I finally feel like I have the upper hand in this fight.  Without the unwavering support of my loving wife and family, my journey could have taken a very different turn.  But today, thanks to their support and the incredible medical advancements, I'm living as much of a normal life as I can.

I want to thank you for taking the time to read my story and for your support, whether that’s through a donation, sharing my journey, or simply taking the time to better understand what CF is. Your support makes a difference, and it gives hope to so many living with this illness. Together, we can continue to drive change and make a lasting impact on the lives of those with CF, just like the advancements that have changed mine.

Thank you for being part of this journey!

-Joe