Been There and Done That

I’ve spoken to two other Congenital Heart Defect (CHD) survivors over the past couple of days, and both of them have commented that I am easy to talk to. Not because I have the gift of gab, I’m certain, but I’m easy to talk to because all three of us share the same problems. Not the same CHD, but the same experiences. “I can tell you that I’m having a bad day and you know what I mean,” one of my friends said. “If I tell someone else I have to explain it.”

Perhaps that is the reason that so many of us in the CHD community are so close – shared experiences. Exactly how do you describe the effects of a heart defect?  When I was a part of  the Adult Congenital Heart Association’s (ACHA) group that appeared before the Social Security Administration last year, we gave the Commissioners a folder of letters from ACHA members and Adult Congenital Cardiologists. Glancing through the folder, I read a great description of the effects of a Cyanotic Heart Defect:

Hold your breath while you run around your house twice.

If you are Heart Healthy, you may try doing that as an experiment, and feel winded and a bit lightheaded for a few moments. You may even feel as if you may pass out if you don’t sit down. But you’ll get your breath and your color back, and soon you won’t even feel tired. But when you have severe Cyanosis, you feel that way all the time.

If you haven’t been there, it’s hard to imagine.

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