Steve Ast is the HeartTransplantGuy!
In 1998, at 26 years old, I was active and healthy. Then something happened to my body three times that summer, and I finally went to the emergency room (what can I say, I’m stubborn). My heart rate was 270 beats per minute and had been that way for 24 hours. The ER doctors didn’t know how I was able to walk in under my own power (what can I say, I’m tough). After a week in the hospital and a battery of tests, I was diagnosed with ARVD (Arrythmogenic Right Ventricular Dysplasia). As the name suggests, ARVD is a disease that affects the right ventricle, grossly enlarging it and surrounding it with fatty tissue instead of muscle. It also impacts the electrical rhythms of the heart, which meant I would soon get an implanted cardiac defibrillator (which turned out to be the first of three that I had over an 18 year period).
While many health conditions are improved by exercise, ARVD is worsened by it. Not what a previously active young man wants to hear. For the next 18 years, I would have to balance my desire to exercise, and my need to exercise for my mental and physical well-being, with knowing that it was causing damage to my heart. There was no clear cut formula to follow, so it was always a guessing game… Should my wife Becky and I go for a hike? Should I chase my kids around the park or sit and watch them? Should I ski on a powder day or skip it?
Over the years my condition worsened, and in late 2015 it was clear that the only option was to be placed on the heart transplant list. The waiting was endless, and every time the phone rang we jumped. Could this be the call? Nope, most often it was a telemarketer. Talk about adding insult to injury! But then, on October 21, 2016, THE CALL did come in! My donor match had been found and we were off to the University of Colorado Hospital. Excited and nervous, that evening I was wheeled around a corner towards the operating room with Becky waving bye with tears in her eyes. I can’t imagine the fear she felt. That’s the last thing I remember about life with my original heart.
One of the first things I remember with my new heart, and one of the only clear memories from the early post-transplant days, was that my first breath after the breathing tube came out was deeper and more rewarding than my last breath pre-transplant. That is how quickly I started to feel better.
To motivate me to get in shape, and to push hard through cardiac rehab, I needed a goal. Yes, hearing that studies showing that transplant patients who exercise in the first 6 months post-transplant have the best long-term results were a motivator. And yes, just being able to exercise again was fantastic. But I wanted something that would say,
“I’m back, better than ever, and ready to live the rest of my life!”
Ride the Rockies, a week-long cycling event through the Colorado Rocky Mountains, would become my thing. I figure if I can ride my bike for 7 days covering 447 miles while climbing over 32,000 feet, I can officially move beyond my “recovery” stage and know that I can do anything in the years and decades to come! Any activity that Becky and our girls want to do I can join them!
I’m riding to inspire people everywhere to never give up on their dreams. I’m riding to prove that less than eight months post heart transplant it can be done. I’m riding as a thank you to the donor’s family, to my doctors, nurses, cardiac therapists, entire medical community, and my huge and wonderful support network. And most of all, I’m riding for my wife and our two girls, as we continue to #TakeOurLifeBack!
I’m one of the lucky ones. My donor was found before it was too late. Unfortunately, that’s not the case for many patients. ARVD is a rare genetic disease, and while much progress has been made in recent years there is still so much to learn about the disease and how to treat it. Therefore I’m raising money for ARVD research which is led by Johns Hopkins University. Finding a cure for this disease is critically important to my family. Just as important is increasing the number of organ and tissue donors so that people don’t die while waiting for a transplant. Thus, I’m raising money for the Chris Klug Foundation whose mission is to raise awareness of the importance of organ and tissue donor registration.
To donate to Steve’s Ride the Rockies and support ARVD research and the Chris Klug Foundation click HERE!