I was born in 1967 with a complex congenital heart condition. Separately, each one was bad but together they probably saved my life. I was born with Transposition of the Great Arteries, a very large ventricular defect (to the point it is now termed as a single ventricle), and pulmonary stenosis. At the time open heart surgery was certainly not on the forefront, something I am eternally grateful for, so they performed a Waterston Shunt at the age of a couple of weeks. This brought my oxygen saturation up from 35. I went along fine until the age of four. At age three I went into the hospital at Pittsburgh Children’s Hospital for my 2nd surgery, a Potts shunt. I was in the hospital for my fourth birthday. At age eight I had my third surgery which turned out to be my last. It was a right Blalock-Taussig shunt. I have had several heart caths and the echos along the way.
To say my life was tragic and tough would be an overstatement. Although I got my share of bullying and being called names I made my way and I made friends. I guess it was a different time. First and foremost, I am thankful to God that he gave me loving to parents who had faith that He had a plan. I am thankful to my parents who never treated me any different than my brothers and by today’s standards would probably be considered too hands off. My parents set expectations for me that I needed to try everything and set my own limits. Because of that I had a very normal appearing childhood.
When I was at an appropriate age I had a paper route. I couldn’t carry the heavy papers so I used my money to pay my parents back for the wagon they bought me to hold the papers. I tried all the sports in gym class, even running the 600 yd. dash (although I walked a large portion of it). I graduated high school on time, I went to college, got a job, went back to college to get a better job, was the best man in my brother’s wedding, and he returned the favor and was the best man at my wedding.
My life has had hardship as well just like a heart healthy guy. My wife, who also had a complex congenital heart defect, died at the age of 50. In our 4th year of marriage we were denied adoption. I have had to deal with a downturn in my own activity level. In 2014 I was slammed with the fact that I couldn’t work any longer. While many think “That would be the life, carefree and setting your own schedule,” I loved my job. It leveled the playing field. I was not judged by how I looked or that I was small or couldn’t keep up.
When I could no longer work a 40+ hour week I turned my attention to helping others. What started as a wild idea for a book to help spouses, in similar situations, morphed into helping other adults with a congenital heart condition who also felt they needed support. I was given the opportunity to be the co-director of Georgia Adult Congenital Hearts.
I am excited to put time and energy into this little fledgling organization. I have big dreams and aspirations for it. I have the desire to help all adults, with a congenital heart defect, maintain the best possible quality of life that they can. This happens through education, support, and advocacy.