My Parents' Role in My Relationship With My ACHD
Thursday, August 29, 2019
My fragility is something of a running joke in my family. The Easter after my aortic valve was replaced with a mechanical valve, my siblings and I were preparing for our annual, hyper-competitive Easter egg hunt. As my brother and I lunged at the same Hershey’s Easter egg, my mom, worried about how easily I bruise now that I was on Coumadin, screamed, “Watch out, she’s fragile!” My memory fades at this point, but I’m pretty sure my brother got the chocolate. It didn’t take long for my siblings to take hold of the phrase, “She’s fragile,” and turn it into one of the objectively better jeers my family has produced.
At 21, I had my aortic valve replaced. I was born double outlet right ventricle and, while this was my fourth surgery, it was the first time I faced any serious restrictions because of my heart. For me, a mechanical valve meant daily Coumadin and maintaining a regular diet of one portion of greens per day—something that was difficult to do in college. I had a lot of questions, but an embarrassing number of them involved if and how I could self-regulate my INR with a definitely-not-scientific combination of beer and kale. The answer of course was no, but a college girl could dream.
Almost five years after my valve replacement, I am so thankful my main concern was how to keep my INR in a therapeutic range while maintaining my college student lifestyle. I am so thankful that I could see past the scarier aspects of a valve replacement and life with Coumadin, and focus on creating a practical plan for living with a new normal. I learned this skill from my parents, who approached each of my open heart surgeries with confidence, intelligence and pragmatism.
Growing up, my parents were very open about my surgeries and my heart defect. I am sure I memorized the name of my defect around the same time I learned my address. My parents taught me that my scar was just another thing about me, like blonde hair or blue eyes. The message was straightforward: the scar on your chest is from the open heart surgeries that repaired your heart defect. There was no big conversation, no flowery language, just facts.
My grandmother recently told me that after I came home from my first surgery and I was still on an IV, my mom would attach the IV to the inside of my stroller and take me on walks. My grandma said that I didn’t look like a sick baby, so my parents didn’t treat me like one.
At a recent ACHA Walk for 1 in 100 in the Washington, D.C. area, I reconnected with Dr. Karen Kuehl, who had been my cardiologist on-and-off throughout my life. If anyone knows Dr. Kuehl, it probably wouldn’t surprise you that her main reason for talking to me was to tell me to visit an epidemiology exhibit at the Smithsonian. She also told me that my parents were the least “fazed” parents she had ever met. My dad had accepted a State Department post in Dubai shortly before I was born.
As Dr. Kuehl put it, when my parents found out about my heart issues, they skipped being scared and focused on how to care for me while still living the life they had planned for their young family. Sometimes life gets in the way, but as my parents taught me, it can’t keep you from living.
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