Feeling Out of Place as an Adult with Congenital Heart Disease

With the ever-growing adult CHD population, the question of where and how to treat these patients looms large overhead. For now, ACHD patients have to muddle through a system not truly designed for their needs.

No one wants to be in the hospital. No one wants to think of one as home. Unfortunately, for many of us, for 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 in 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. Just another disagreeable patient. 

In a pediatric hospital, nothing is meant for you. 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 4th 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. We’re the 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.

You can also find this piece published on The Mighty.

Jennifer is a graduate of DePaul University, with a degree in Elementary Education and an MA in English and Creative Writing from SNHU. She is a 39-year-old adult congenital heart patient, born with Truncus Arteriosus, has had three open-heart surgeries, and is an ICD recipient. Jennifer is the ACHD Director for Conquering CHD. She also serves on the steering committee of Chicagoland Cardiac Connections, an organization that provides support and resources for patients with cardiac devices, based out of Lurie Children’s Chicago.

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