There is a great article about my friend Jim Wong on the Forbes.com website today. Jim also has a Congenital Heart Defect, is a member of the Adult Congenital Heart Association, (ACHA) and he and I moderate the ACHA message boards together. (He’s been moderating for a while, I’m just a rookie!)
Like a lot of Adults with CHD, Jim thought that the operation he had as a child “cured” him. But he later found out that wasn’t so. Luckily Jim came through another operation with flying colors, and now he’s getting the high level of health care that an Adult CHD’er needs.
One of the goals of the ACHA is to “Find the Lost“. No, not those who drive in circles and refuse to ask directions, but the Adults with a CHD who are no longer getting good Cardiological care. How could such a thing happen? There are several ways. The Cardiac Kid grows up, moves out, life gets busy, and one of the first things that gets put off is that trip to the doctor. Perhaps, like Jim, he assumed that he was cured. Or like a lot of young people, maybe they assume that nothing bad could happen to them. For whatever reason, medical care becomes a low priority item.
An Adult CHDer needs more (and better) medical care, not less. When something begins to go wrong, your heart will send subtle signals: a chamber will begin to enlarge, a leaky valve will cause a distinctive “whoosh” sound that can be detected with a stethoscope, or there could be a slight rhythm change detectable by electrocardiogram. Often by the time these changes can be felt, valuable time has been lost. CHDer’s are also open to Endocarditis, which could lead to surgery to replace a damaged valve. If you don’t see the need to be concerned, just ask your family. Don’t be surprised if they throw you in the car and drive you to the nearest Adult Congenital Heart Defect Center.
So if you are one of the “Lost”, you’re wanted back home. A lot of us are looking for you.