Finding an ACHD Program is Often Complicated and Stressful

Earlier this month, I received a call from one of my adult congenital heart disease (ACHD) nurses telling me I was in Afib—again. This time I’ve been in Afib since November, which might explain why I could get my brain excited about the holidays but my body would.not.follow.

It’s times like this when I wish I had an ACHD team close by. I’m in transition to see an ACHD cardiologist once he comes to Anchorage this spring. It’s unsettling knowing your team is so far away and if, Heaven forbid, something bad happens, you are hours and sometimes hundreds of miles away from a team that knows how to treat you. It worries not only me, but my family too.

This is how it works for me to see an ACHD cardiologist:

1. Take a commuter plane or drive four hours to Anchorage, depending on the weather.
2. Meet with pediatric cardiologist who has “permission” to meet with me through Alaska’s complicated healthcare system. At that time, I may have a device check, an echo, or other needed tests such as a CT scan or stress test.
3. Depending on the weather and time of day, I will fly or drive the four hours back home. If I’m too tired to travel or there are no evening flights, I stay overnight in a hotel.
4. Wait for the phone call to schedule a 6-month follow-up or annual appointment with the ACHD cardiologist when they come to Alaska. This usually happens 2-4 times a year.

Any added tests done by my local hospital or primary care provider are often inadequate, meaning my local physician and hospital doesn’t have the most state of the art equipment to get the best results.

I know I’m not the only one who deals with the anxiety and frustration of having to travel long distances to see an ACHD team. According to ACHA, only 10% of the ACHD population is seen by an ACHD cardiologist or through an accredited ACHD program. Additionally, the ACHD population is 3-4 times more likely to have an emergency room visit, hospitalization and/or ICU stays than the rest of the population.

I can attest to being seen in an emergency room and the attending physician having no idea what to make of me. Part of the reason I was out of contact with an ACHD cardiologist for so long was because of the hassle of being seen in the emergency room. I knew they wouldn’t know what to do with me. The other reason is because I didn’t know they existed until 2012.

Outside of early childhood tracking, there are between 2-3 million children, teens, and adults living with a CHD. But since there is no formal way to track everyone, especially adults, this number could be higher.

I saw a pediatric cardiologist from birth through 18 until he moved out of state to practice elsewhere. My parents were given the name of another pediatric cardiologist that could treat me. However, since I was 18 years old, I was told I didn’t have to see a pediatric cardiologist anymore.

What they didn’t tell us was that I still needed to see a cardiologist knowledgeable about congenital heart defects.

For years I stumbled from one general cardiologist to another. I always felt uncomfortable. I was always the youngest person in the waiting room.

I don’t know how much better my health would’ve been if I’d had the right care once I became an adult. I didn’t even know there were ACHD clinics when I turned 18 (they were very few and far between), but there are now.

Unfortunately, there still aren’t enough clinics. In the United States, there are 48 accredited ACHD programs. Some states have more than one (such as my home state of Ohio, which has three). But other states like Alaska, North Dakota, and Nevada don’t have any.

At the very least, every state should have an ACHD program to serve our population. Maybe then, there wouldn’t be so many adults who drop off the grid for specialized care once they become an adult.

Proper ACHD care should be on every state and government lawmaker’s mind, but I know it isn’t.*

Yet, I hope by the time you read this, I will have been treated for my latest episode of Afib, and be back on the road to feeling better.

* ACHA works to advocate for expansion of the ACHD provider workforce and telemedicine options for CHD patients, but there is still a long way to go.