Diagnosed as an Adult: My Journey to ACHA

I often talk about the moment I was lying on a procedure table with my cardiologist in my heart. I have spoken about the moment the room stirred. I asked what was wrong and Dr. H said, “You have a very special heart.” My reply was, “I told you I am fearfully and wonderfully made.” However, I have not shared the details of the gut-wrenching events that followed, or my saving grace, until now.

Later that day, Dr. H entered my room in the Critical Care Unit of the local hospital. I knew when he walked into the room that it wasn’t good news. He had a look of empathy that in 30 years with doctors of all kinds, in all situations, I have never seen. He proceeded to try to explain the anatomy of my heart. He had to draw a picture. He was clearly walking on a tightrope. He wanted to accurately convey the risks without scaring me. He succeeded. Then I googled my condition…

Sudden cardiac death.

I found no research about my condition. None. There were case studies. All the studies I found were postmortem (in dead people). My cardiologist recommended a specialist in congenital defects. In my home state of Indiana, I found one with the “congenital” in his title—but he was a pediatric congenital cardiothoracic surgeon. The risks began to sink in, and it definitely scared me.

The one good thing that came out of that terrifying Google search was the Adult Congenital Heart Association. It is an organization whose sole focus is people like me. My particular defect is extremely rare; it is found in less than 1% of the population and even within that 1%, there are variants. Yet somehow ACHA was able to link me with someone who also has an anomalous right coronary artery. I remember exactly where I was when I first spoke to her. I was driving and crying. I was not alone.

I also found an ACHD specialist on ACHA's website, as well as guidance about selecting a specialist. Some heart surgeons may assert that they can perform surgery on a congenital defect. However, traditional procedures like grafting can cause more harm than good in some instances. Since my defect is so rare, genuine specialists are rare. I opted for Mayo and saw a doctor whose work I followed. But had it not been for ACHA, I wouldn’t have even known what to look for.

In the nearly two years since I was diagnosed, I have gone to ACHA repeatedly for information and guidance. Last year, ACHA announced they are partners in a registry of adults with congenital heart defects, and even as I type this it brings tears to my eyes. It’s really hard to put into words what this means to me. Actually, the research may not be of any direct impact to me, but to know that future generations, even my own children, may benefit from the information this research uncovers means so much.

It is the reason that I made it my personal mission during Heart Month this year to raise awareness. I want to raise awareness not only for my specific condition, but also for heart health overall, gender disparities in cardiac care, and racial disparities in healthcare. And I want to raise money for research that can say to just one—take heart, you are not alone.