feel a bit paralyzed by emotion right now – crying as I write this! Today I learned that Makena Houston whom I met as a young girl in New Zealand in 2002 is in respiratory failure and in need of a double lung transplant. Makena has CF. Here is our story:
In 2002, at IRONMAN New Zealand, I met this great woman, Tracey Richardson. She is mom to Cameron and Makena, 2 children with CF. She wanted them to meet someone like me who was thriving in spite of CF. It wasn’t until Dave’s mom was dying of cancer that I realized that I could offer hope to families with CF. As we searched for hope for Dave’s mom, I clung to any story of any person who survived cancer. It didn’t matter how old they were or how “benign” their cancer was, a survivor was HOPE. It was then that I realized that I could be that HOPE to anyone with CF especially to a mother with 2 sick children.
After that meeting, Tracey decided that she would race IRONMAN New Zealand to raise money so that children with CF would have funds to do sport. CF is a costly disease. When I was sick in 2010, I had one antibiotic that cost $3500 per month and it was not covered by OHIP. I only had to be on that drug for 10 months but some people are on it for a lifetime. And so Tracey wanted to create a fund to provide financial support for those CF children to play sports. She knew that sport would move the lungs and lead to better lung function. I was an example of that. When I was in hospital with a lung exacerbation in 2010 and a lung function of 55%, the doctors all said that I was as healthy as I was because of triathlon. They even offered to bring a stationary bike to my hospital room so that I could breathe hard enough to cough!!
Tracey began the “Breath for CF” campaign, raced IM NZ and then was invited to race at the IRONMAN World Championships in 2004 to continue her fundraising.
I had this fairy tale vision of the event. Tracey, a mother of 2 children with CF racing for her kids and myself, a professional athlete with CF, racing and trying to win the race. I visualized myself winning the race and putting a great bit stamp of “HOPE” on CF. Two weeks prior, I had executed a 2 hour run at 4 min per km pace from Waikoloa to Kawaihae and back. I could ride for hours holding 200 watts. I was so ready to race. But all of that “readiness” also made me “ready” for a CF bacteria to rear its ugly head. On Monday of race week, I came down with a serious chest infection. I was put on heavy antibiotics and I was feeling pretty darn sorry for myself.
On Wednesday before the race, Tracey and I met for some TV interviews that were highlighting the “Breath for CF” campaign. I remember seeing her face and in the distance and just crying – sort of like I am now. And in that instant, I was humbled. “Shame on me. I am sad because I may not win the Hawaii IRONMAN meanwhile Tracey’s children fight for every breath they take. Shame on me.”
Instantly, my perspective changed. I saw CF as a blessing. I was so lucky to get to race the IRONMAN World Championships. I was so fortunate to get to race the best women in the world AND have CF. I promised myself that I would not flirt with this opportunity. I would be the best person on that start line with CF. I would do the best I could with a chest infection. I promised myself that I would smile with gratitude all day. I would use this triathlon platform to prove that CF was not a death sentence. I would prove that I could thrive in spite of CF and CF patients everywhere can live full. I would race with CF and I would “win” with CF.
I raced the IRONMAN World Championships that Saturday. I was on both Cipro (750 mg twice per day – causes Achilles tendon rupture) and Zithromax (500 mg twice per day) and 2 inhalers. It did not matter. I was lucky to get to race. I savoured every minute. I loved the heat. I loved the wind. I loved my competitors. I didn’t cough all day long. I finished 4th overall. For those 9 hours, I thrived. I beat CF!
Tracey finished the race as well. She won too. She won for Cameron and Makena. She was finally not a “helpless” mother of 2 children with CF. She was a thriving mother of 2 children with CF.
Tracey, Makena and Cameron – you shaped my life and made me a champion that day. You taught me that CF is a blessing. Makena, you will be a champion. You will get your double lung transplant and you will live full. It will be scary and risky but beautiful things will come out of the fear.
Makena, when I was reading your post, I was hearing my own words. I don’t feel as well as I once did. My lung function has fluctuated as low as 55% (one lung is 50%) in 2010, up to 70% in 2011 and now in the 80’s. It used to be 100%. Last year, I had a collapsed lung and probably felt the way that you feel every day. But I recovered and I am healthy! I am fit and I am fierce. And I will use my “breath for CF”. Save your breath. Get strong because when you get your lungs, you need to be ready to breathe fully and live fully for many more years.
Please sign your donor cards. There are patients who need new lungs! Here is a link to Makena’s plea for an organ donation – https://www.facebook.com/TheLonelyHearts/posts/10155741787841877