It Took Two Hearts to Get Me Here
Heart disease has been part of my story since before I was born. I was born with hypertrophic cardiomyopathy, the same heart disease that took my dad’s life while my mom was pregnant with me. Since it was genetic, doctors knew from the beginning that my heart needed to be watched closely.
Going to the cardiologist was just a normal part of growing up for me. I actually kind of liked it. I got to miss school, have breakfast with my mom, get all my tests done, and then go back to being me. I knew my heart was different, and I knew what had happened to my dad, but I don’t think I really understood what any of that meant yet.
I knew there were things I couldn’t do. I got winded easily, and I wasn’t allowed to play sports, which was probably the part I hated most. I begged to be on the swim team in elementary school and later wanted to run track. My doctors said no both times. Those are the only times I remember leaving cardiology appointments in tears. I was mad that my heart made those decisions for me.
As I got older things became more serious. I started heart medication as a teenager, and at 17, I received my first implanted cardiac device. I would have several ICDs (and the complications they came along with) over the years before eventually needing a transplant.
Transplant had always been in the conversation. Doctors had mentioned it throughout my life, but for a long time it felt like one of those things that could happen someday, not something that actually would. Until it did.
My health went downhill quickly. By my mid-thirties, basic things left me exhausted and out of breath. Some days I’d sit in my car for half an hour trying to catch my breath before I could make it inside. Congestive heart failure meant sleeping sitting up, which is exactly as restful as it sounds. The real low point was passing out in a Kroger, which earned me a very expensive, very unglamorous helicopter ride to Lexington. Mentally, I wasn’t doing much better. Just getting out of bed and making it through the day took about everything I had.
After the long process of being “worked up” to get on the heart transplant list, I was admitted to the University of Kentucky and placed on a heart assist device. I lived in the hospital hooked up to a machine that was helping keep my heart going while I waited for a transplant.
Waiting for an organ is complicated. You need this thing to live, but getting it means someone else has died. It starts to feel like you’re rooting for something terrible to happen, which feels incredibly wrong. In reality, I was just rooting for my own chance to live.
Seventeen days into my UK HealthCare residency (the kind with no Ph.D. at the end of it), I got the call. That call was to tell me that my new heart had found me, and that heart belonged to Will.
After losing her son, Will’s mom Susan, made the decision to donate his organs. She didn’t know me. Will didn’t know me. But because Susan said yes, I got to live.
It’s been three years since I received Will’s heart. I went into surgery overnight, woke up with a new heart, and somehow walked out of UK HealthCare 11 days later. On my own two feet. With someone else’s heart beating in my chest. Honestly, I’m still not sure how any of that was real.
Transplant is more than just the happy part people see. There’s also grief in it, and I had to prepare for that healing much more than the physical healing. Because the grief stays with you. You have to dig deep and ask yourself: How do you grieve someone you never knew? How do you make sense of the best thing that ever happened to you coming from the worst day of someone else’s life?
One of my chaplains at UK said it best: Me needing a new heart didn’t cause this loss. But somehow, those two realities came together and allowed something good to come from something terrible.
I’ve learned that I can be incredibly grateful to be alive and still feel sad about what had to happen for me to be here. Those feelings don’t cancel each other out. But one of the best and most unexpected parts of all of this is that Susan and I have since met and become friends. It turns out Will and I had a funny amount in common. I love getting to learn about him through Susan, and I’m so thankful she’s willing to share those pieces of him with me.
After my transplant, I’m doing things that younger me probably wouldn’t believe. Six months after my transplant, I met the love of my life. Now we’re building a life together with our two dogs, including a retired racing greyhound who needed a second chance of his own.
I spent most of my life knowing there were things my heart wouldn’t let me do. Now I get to love and be loved, work for the organ procurement organization that assisted in saving my life, be active, set goals, come home to our dogs, and, if I really feel like it, go for a run.
