I remember the first time I sat in an adult cardiology waiting room. It was refreshing to have adult-themed magazines to look at and I enjoyed the peace and quiet of the elevator music. I still stood out from the crowd, but this time instead of being the oldest patient in the room I was now the youngest. I wasn’t quite sure of what to expect when I transitioned into adult cardiology care, but I never anticipated how much I would ultimately need to advocate for myself in a world where the title “heart disease” is synonymous with coronary artery disease, or acquired heart disease.
It has taken me 12 years to find appropriate cardiac care with an adult cardiologist who specializes in congenital heart disease. Those 12 adult years were filled with many moments of heart disease label confusion.
I belong to a large health maintenance organization that thrives on preventive care and health promotion. I really appreciate that aspect of my HMO, but when a medical assistant lumped me into a group with all heart disease patients I started receiving “post heart attack care” and “smoking cessation” flyers in the mail. It took many phone calls to get removed from this list, and I even had to explain to the health educator that my CONGENITAL heart disease was not caused by smoking and that I’m not obese.
I once asked a clinic nurse to have my doctor call me about a Holter monitor, and his first remark was, “Oh, how long have you had atrial fibrillation?” Now I know CHDers can have atrial fibrillation, but what he was referring to was the atrial fibrillation that commonly occurs post heart attack. I even know that CHDers are susceptible to a heart attack (and it is rare), but that is because of their anatomy and rarely because of coronary artery disease.
The best had to be when an advice nurse, upon reviewing my medical history, remarked “Tetralogy of Fallot??? Aren’t you too old to have that? I mean, you’ve been repaired, right? So why would they even list that on your medical history?”
I spent a good 20 minutes explaining, well, EVERYTHING to this nurse. Afterwards she said, “Well aren’t you a smart cookie. I feel like I should get education credits just for talking to you.” I could have, and frankly wanted to, belittle her with some witty comeback, but I refrained, deciding that my calm education was much more effective.
I imagine that adults with diabetes type 1 (the type that develops in childhood and is congenital of sorts) feel similarly to us. I’m sure ignorant people tell them they could reverse their disease with lifestyle changes, or other people with diabetes type 2 try to relate to them.
Granted, managing your blood sugar with insulin sucks either way, just like open heart surgery sucks regardless of why you need it. But I get frustrated when people compare CHDers to other adults with coronary artery disease when the cause and course of care are worlds apart.
The care I receive now is wonderful, and I actually feel confident in my knowledgeable physician and her staff. I’ll always have to explain, correct, and advocate for myself, not only to the medical world but to people in the general population who have no idea what being an adult with a “pediatric condition” is like.
Organizations like ACHA are really helping us to stand on our own within the heart disease community. We really are angelfish swimming in a sea of tuna—we’re more exotic and much more interesting.
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