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How I Went From Being a Solo Heart Patient to Finding My 'Band'

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I was once alone in this journey called congenital heart disease (CHD). This condition means that I was born with an abnormality in my heart. Actually, I was born with three. I had two surgeries before the age of 1. I could barely walk, or take a bottle without having to take many breaks. In 1983 the statistic of 1/100 was not even heard of. We were just the abnormal, the few, the guinea pigs in many ways.

I went to a pediatric cardiologist – his office was an hour or more away. He was the sweetest man on the planet. His wall was full of other kids with CHD, but I never saw one in the office. So off I went into the world with two “weird” scars and a note to not have to be strenuous at gym class or have to do the mile run. The other kids would say, “Why can’t you run?” I would explain that I had a heart condition. Then they looked puzzled and told me they were slow because they had asthma. I guess that was as close as I got to anyone like me.

In fifth grade I came to a new school. A girl across from me had been absent the day before, so I asked if she was feeling better. She said, “No, I’m fine. I was at my cardiology appointment.” Imagine my shock and surprise to not only discover another heart kid, but she also went to my same cardiologist! I was over the moon! So we became fast friends.

A few years later, in high school, a mutual friend of mine was missing from school for a few weeks. When he returned I asked where he had been. He replied, “Oh, I was in the hospital having an emergency heart surgery.” I, again, was in shock for this was only the second person I had ever met with a defect, and he was in my circle of friends.

I actually skipped many years in between before meeting the major players in my “Lonely Hearts Band.” A few years ago the wonders of Facebook reunited me with people we had been in the hospital with. Also, I began to attend congenital heart walks, and became involved with the Adult Congenital Heart Association. I found the “Zipper Sisters” group on Facebook as well.

In February of 2017, my new adult congenital heart cardiologist told me about the Congenital Heart Legislative Conference in Washington DC. So I signed up and off I went. I soon found myself in a room with about 175 people, more than half with a defect. This included children and adults my age. I was so overwhelmed to meet all these people at once.

Fast forward to June of 2017 and I attended the National Conference of the Adult Congenital Heart Association in Orlando, Florida. Now I had about 400 people just like me. I met a great group of people. We all spent the few days together with similar life stories, hospital horror stories and just became the “Lonely Hearts Club” band I had never thought I’d ever have.

It’s the power of people, common struggles, and the best hearts – despite being broken. I encourage anyone with any illness to reach out and find someone, regardless of how rare or common your disease is. These bandmates of mine are some of my best friends – we text anytime day or night with medical questions, life questions and anything in between. I thank my friends deeply for becoming part of my band.

Getty Image by oculo

Originally published: March 16, 2018
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