Creating New Friendships and Opening Doors

As I was on my countdown to my fourth open heart surgery, I saw a sign at my adult congenital heart disease (ACHD) clinic. It had been there for quite some time as it was wrinkled from the damp air, but I had never processed it before and I knew nothing about the Adult Congenital Heart Association (ACHA).

Like many patients with congenital heart disease (CHD), I went many years without needing serious intervention, in fact, it had been 24 years since my last open heart surgery. Contrary to the first six years of my life, I was blessed to live a relatively normal life for many of those years. I had always been a compliant patient and worked hard to understand everything I could about my heart and all my other medical complications, but had no inclination that there was anything bigger than my own struggles with my health.

Once home after seeing that sign, I joined the ACHA. I had little expectations of what might be in it for me, but I knew there could be no harm in looking. What I ended up finding was more than I could have ever dreamed and it has entirely changed the course of my life.

One night while scrolling through ACHA’s Discussion Forum looking to learn from other’s experiences with pulmonary valve replacement, I found a post from a fellow Tetralogy patient looking for a very unique set of complications. The headline fit me perfectly so I hastily clicked on the post. On the other end was current ACHA Heart to Heart Ambassador, Kristen Downing, who had been looking for someone with the same set of complications for over five years. I was her heart match; it was too perfect. Even though we were born in a different generation of treatments, we shared so much in common. It was a great feeling to find someone who was so much like me; we quickly figured out that we lived a mere hour from each other. It was too good to be true.

Upon our first meeting, I felt like I had known Kristen my whole life and we shared many of our war stories over dinner. It was the first time in my life I had talked with anyone who had severe CHD much less tetralogy of Fallot. I learned so much in the few hours of our first visit. We saw each other several more times before my surgery and talked often. She was at my bedside in some of my first lucid moments after surgery. Kristen was my lighthouse as she had already preserved what I was going through and she helped lead me through the most challenging times of my life. 

Beyond the friendship, Kristen introduced me to the CHD world and all the resources and groups that I would have never imagined existed. With her lead and the resources of the ACHA, I quickly understood that I was part of something much larger than my own care. I was part of a community of warriors that have persevered some of the greatest challenges given to anyone. I realized that I was a statistic and not in a bad way. I learned of the struggles many undergo transitioning from pediatric to adult care. It queued me into the struggles of the entire CHD community and peaked my interest. It opened the door that caused me to completely change the course of my life and devoted it to trying to serve the vastly under-served ACHD population that I belong too.

Seeing that sign for the ACHA was at a time in my life when I needed the resource and friendships they offer the most and maybe that is why I finally processed it. If not for the ACHA, I would have never found my passion and purpose in life and one of my most special friendships.