Why I Often Feel Out of Place as an Adult With Congenital Heart Disease

No one wants to be in the hospital. No one wants to think of one as home. Unfortunately, for many people with congenital heart defects/diseases and our families, that’s what hospitals often become, a kind of home. We’d all rather be snuggled in our own beds, watching Netflix and not the hospital-approved programming. But for many adults with CHD, the fluff of the pillows isn’t the problem.

You’re not supposed to like it. It’s a hospital. You’re supposed to heal and go home. But while you’re there, shouldn’t you feel as if you’re in the right place? A place equipped, a team prepared for you? A center that acknowledges your sub-specialty? As an adult, I have been admitted to and visited clinics of both pediatric and adult centers. And there are pros and cons to each. But we don’t really talk about the difficulty both have in fully serving the adult congenital population.

There’s a discomfort in being the oddity in an adult hospital, a fear in being where CHD is not well understood, where you’re the youngest patient on the floor, in the waiting room. Often for the first time, overnight guests aren’t welcome, and the nurses have never heard of your condition. Neither has the physician. How could they treat it? The weight of your collected medical trauma does not burden the medical team, but rather it’s discarded, disregarded, dismissed. You’re just another disagreeable patient.

In a pediatric hospital, nothing is meant for you. You’re always the oldest patient on the floor, in the waiting room. Parents holding tiny babies looking at you and you wonder “are they wondering why I’m here?” Cartoons, bright colors, and doll-sized chairs tell you kids belong here. You’re not represented on their website or in the halls, and when making appointments they ask, “What’s your child’s birthdate?” Each time, you reply, “I’m actually the patient.” Practical issues arise as well, they may not be ready for your height or weight, and if an organ that’s not your heart needs some attention, they don’t have the staff.

You feel as if you don’t really fit in either place.

Then add the complication of not having enough Certified Adult Congenital Specialists to go around. Adult patients are forced to travel farther, where they may be removed from the support of family and friends, or hop from hospital to hospital as their doctors leave.

At age 31, just eight years ago, I started seeing an ACHD Specialist for the first time. I will be starting on my fourth new physician in so many years. Getting used to a new system, a new clinic, a new set of faces, once again. All while trying to manage my health and the worry that something might go wrong because I have a new team that doesn’t know my background.

Adults with congenital heart disease are a displaced population. No one really seems to know what to do with us, they can’t agree, or they don’t want to make the investment. It’s a frustrating struggle, and I don’t have all the answers, but we have to keep raising our voices until we are heard.