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The Heart Disease Label

Aug 10

Posted by: ACHA
8/10/2011 8:38 AM  RssIcon

By Christy Sillman

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.

Christy Sillman was born with Tetralogy of Fallot with Pulmonary Atresia and now works as a pediatric ICU nurse. She is passionate about working with both children and adults with congenital heart disease. Christy writes a weekly column on her experiences as a nurse, ACHD'er, and new mother, which you can read at by clicking here.

Location: Blogs Parent Separator ACHA Blog

3 comment(s) so far...


Re: The Heart Disease Label

Thank you, Christy! :)

By Lena on   8/10/2011 1:23 PM

Re: The Heart Disease Label

I really appreciate your writing, Christy. And completely can relate to what you have said about CHD and CHD...I remember one woman talking to me about her heart disease. Another woman said to her: "You have coronary artery disease, NOT congenital heart disease". I loved that! And yes, it seems true that most people see ONLY coronary artery disease when talking about heart disease. One nurse about five years ago, looking at my 1958 scar which goes under my breasts and thought I had had breast cancer. And speaking of diabete, I have Type Two diabetes and run into the "Oh, you must have to inject yourself with a needle all the time!"...No, I don't. There should be another name for Type Two diabetes. So there it is...labels, labels. I too think we CHD people are "more exotic and much more interesting". Toni Smith

By Toni Smith on   8/12/2011 5:09 PM

Re: The Heart Disease Label

worst i had was a few weeks ago, i had back and chest pains, bp went sky high, i went to emerg at our local hospital, i told the nurse i had congenital aortic stenosis, and if things get worse for me not to give me nitroglycerin, she asked me why not!.. i was thankful that i was ok, the pain went away, im not sure what it was, doctor said might have been the cup of coffee that i had,(i have coffee every morning) or that i might have been upset, funny how the scare with the nurse that was looking after me did not raise my bp or give me pain, i was scared to death , thinking to my self i have got to get out of this hospital before they kill me, i did ask them to forward a copy of this to my cardiologist, i am on hbp meds, the only reason is because of my congenital heart problem, i am slim and and eat a healthy diet, for the most part, and have always been active, but now i have restrictions, funny how even doctors dont know much about this problem. that was the worst feeling, to be in pain and have to explain to medical staff why not to give me a med that might kill me ...thanks Diane

By diane on   8/15/2011 3:33 PM

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