I was diagnosed when I was born in 1978, so cystic fibrosis was always part of me, and I never knew any different. I never knew what it was like not to cough, not to take handfuls of medications throughout the day, and not to always have a puffer around. Entering my teens was a rollercoaster of hospital admissions, school, and the usual teenager anxieties. But in my eyes, everything was normal.
My 20s were a period of ignoring my cystic fibrosis — though the coughing and enzymes were a giveaway of my hidden disease. I made sure I lived every moment to the fullest. Traveling and living abroad — nothing could stop me trying to be accepted as normal. Meanwhile my symptoms were a constant reminder of things being not quite right.
During this time, I rarely went to a physiotherapist. Cycling was all the airway clearance I required ... or so I thought. I pushed my own limits cycling to work daily and doing longer weekend rides. I was a true weekend warrior (or cougher). The burning of my lungs on steep climbs was excruciating, and while I believed this was normal, I could be heard coughing from miles away. I would use the pain in my lungs as my indicator of how intense my climbs were.
In my 30s, digestion issues started to impact me more and more. Dehydration and the all-too-often hospitalization due to Distal Intestinal Obstruction Syndrome (DIOS) snuck up on me. The pain was unbearable, and it became a standard routine for me to instruct the emergency department on the steps required to get me out as quickly as possible. Between this and COVID-19, I started spending less and less time on my bike. I was on constant rounds of antibiotics to keep the Pseudomonas at bay, along with the other infections routinely attacking me. Enzymes, antibiotics, multi-vitamins, albuterol, various other puffers, salt tablets … you name it. I was a walking pharmacy.
While some people might say their life really started at age 18, 21, or 30.... mine started when I was 44. In 2022, after the first few doses of a CFTR modulator and the resulting purge, things changed. I stopped coughing — no more infections, no more hospital admissions. I started gaining weight quicker than ever.
To lose the extra weight, I decided to slowly start cycling to work (23 miles each way). The beginning was tiresome and difficult BUT I became faster, I became stronger, and I started losing the weight. My power-to-weight ratio increased, my maximum rate of oxygen consumption increased, and I was becoming stronger every day on the bicycle. My lungs were no longer burning, only my legs. For the first time in my life, I could cycle for two hours and not cough once... not once.
So now I am preparing to do something that most normal people couldn’t do... cycle across America. Because of advancements in modern medicine, I have the ability to push myself beyond what I and so many professionals thought was impossible. I want the world to know my story.
The team at my CF clinic has fully supported me every step of the way. My health has improved so much since starting on CFTR modulators that internally I feel invincible and ready to show a glimpse of what I could have been if I had the opportunity to start these meds 30 years ago.
Daily commutes to work and multi-day solo bikepacking trips across the Australian Alps have helped me prepare for this ride, although nothing can quite prepare me for the task at hand.
No matter the distance, elevation, grade, or climate — when you push yourself to the extreme, you dig down into the raw emotions that you typically hide away. And it is at these moments while we are at our weakest point that we are, in fact, our strongest. I realize how lucky I am, and I remember those who don’t benefit from modern advancements in medications, like CFTR modulators. All the pain and emotions I go through will be dedicated to them, and they will be pushing me through the journey.
Never in my wildest dreams could I have imagined something like this could ever be possible, but two years ago someone turned on the switch inside me. For the first time, it won’t be CF taking my breath away — it will be the stunning vistas, local friendships, and charity of others while I cycle across America.
Interested in sharing your story? The CF Community Blog wants to hear from you.
