Made To Move
THE ECHELON BLOG
Member Spotlight: Melissa S. and the Story of Her Two Hearts
To honor World Transplant Day, we want to share the story of one of our members. Melissa S. is a leaderboard leader and proud owner of an EX-3 Connect Bike, but her love of cycling would not be possible without her two organ donors.
Here is Melissa’s story in her own words.
Childhood Heart Failure
I was diagnosed with cardiomyopathy (an enlarged heart) when I was two and a half. My pediatrician heard a heart murmur. From that point on, I was seen yearly by a cardiologist. At age seven, my heart was so large that it began to not work properly, and I went into heart failure.
I waited for five weeks for my first heart. During that time, I was not allowed to leave the hospital because I was hooked up to IV medications that were keeping me alive. I think the waiting part was most difficult for my family — my mom couldn’t work because she was with me in the hospital 24/7. My dad was working, but it was hard for him not to be with his sick child.
As a kid, I didn’t understand the reality of things.
My life was dependent on an organ donor. I received my first heart from another child named Bridget, who was only eight years old at the time. In her final hours, it was her mother who said “yes” to organ donation.
Growing Up with Someone Else’s Heart
During my time with my first transplanted heart, I was a competitive cheerleader in high school and college. Still, I could hardly engage in strenuous cardiovascular activities such as running and biking.
Doctors have always told my family and me that a heart transplant is not a cure; it is a trade-off for one medical problem that a person can no longer live with for another that can be managed medically.
My first heart transplant lasted 18 years. Over time, my valves began to leak, and my heart muscle became stiff. My heart was not pumping blood adequately, and therefore blood flow was reduced. This is common in long-term heart transplants, and I was lucky enough to receive a second heart.
A Life on Hold
As a kid waiting for a heart transplant, I knew that my heart was not working properly, and I would need surgery to replace it. I waited at Children's Hospital of Philadelphia, and all the doctors, nurses, and Child Life Specialists there did an amazing job at making the experience a fun one. I know it was stressful for my family, but I just remember the fun and games I played while I was there.
As an adult, my experience waiting for a transplant was very different. I had just begun my full-time teaching career, and I was in the middle of getting my master's degree when my life was put on hold.
This time I knew the reality of things. I remember thinking, "someone who was alive at this very moment will die and donate their heart to me." That was a scary thought, and at times it felt so unfair. I can remember just wanting my life back. It was hard to watch my peers getting married, starting to have children, and furthering their careers while my life was in limbo.
I waited for eight months.
My Second Heart and New Opportunities
I wasn’t strong enough to walk up the stairs or even stand in the shower on my own. I was just weeks away from dying.
After waiting and worrying, I received my new heart from Chrissy. She felt so strongly about donating her organs that she made sure her family knew her wishes if anything were to happen to her. In her final hours, when doctors asked her family about donation, they could answer without hesitation.
Chrissy’s heart gave me a chance to experience fitness like I could not before. When my heart failure was at its worst, I couldn't walk upstairs without feeling short of breath. So after my second heart transplant, I knew I wanted to pursue new physical activities that I wasn't able to do before. I think this is the reason I fell in love with spinning.
My Life Now
About eight years after my first heart failure, we discovered my brother also needed a heart transplant. It was then that we learned a genetic mutation caused my cardiomyopathy. My husband and I are currently pursuing IVF to avoid passing on my gene mutation to our children.
It means the world to me to be able to engage in cardiovascular activities and to be able to keep up on the leaderboard. I can thank my donors and doctors for this. Every time I can feel my heart beating strongly, and I can take deep breaths while working out, I think about my amazing donors who have made this possible.
What I Want You to Know About Organ Donation
If you are an organ donor, make sure you have that conversation with your family. One organ donor can save up to eight lives and enhance the life of 75 other individuals through eye and tissue donation. There are over 107,000+ Americans on the national transplant waiting list right now, and 17 of those people will die each day waiting.
I am thankful that Chrissy’s heart beats strongly inside of me now. I never forget that it is thanks to my two organ donors that I can race you all on the leaderboard. See you there!
If you are interested in learning more about organ donation or would like to locate your state’s registry, you can visit organdonor.gov.