Becoming a Heart Warrior, Part I

Most Funky Heart! readers are Heart Moms and Heart Dads, and a lot of them wonder about what they are going to do about their child’s Cardiac Care as they grow older.  Most Cardiologists can’t handle CHDers – theyare trained to deal with acquired heart problems, things that are brought on by normal aging or (heaven forbid!) too many cheeseburgers. If you have a heart defect, you will need a doctor trained to deal with heart defects – and you will need to see that doctor all of your life.

But even though some of the CHDers my age and older had to, you probably won’t be stuck with a “kids doctor” all of your life. There is a growing cadre of doctors known as Adult Congenital Heart Defect Cardiologists who are trained to treat Congenital Heart Defects – but from an adult viewpoint.

Unusually, these doctors aren’t recognized as a specialty – not yet. What happened is that a lot of these doctors are really Pediatric Cardiologists, who have followed their patients over the years and “grown up” with them. As their older patients came back to them and started asking adult questions (“Doc, you have any tips on getting insurance with a heart problem?” or “Hey Doc, Beth and I want to get married… what about having kids?”) these docs didn’t pass the buck. They dug around, found the data, and worked out the best answer for their patient.

But times are changing, and now there is building momentum – led by the American College of Cardiology (ACC) and the  Adult Congenital Heart Association (ACHA) – to make Adult Congenital Cardiology a recognized specialty, with guidelines and proficiency tests.  New doctors would have to be board certified to be an Adult Congenital Cardiologist. Doctors already in the field would be “grandfathered” in, providing they can pass a proficiency exam.

And as for how adults with CHDs would be cared for, there are already guidelines. The first set of guidelines is known as the Bethesda 32 Report. Bethesda 32 splits all of the known heart defects into three groups – mild, complex, and severe. All CHDers need to be seen at a Regional Adult Congenital Heart Defect Clinic at least once; and perhaps more often depending on their defect. The first visit (which all CHD adults should get) is to establish a baseline – determine what is that individual’s “normal”. After that, someone with a mild heart defect can be cared for by a general cardiologist and only needs to be seen at the Regional Clinic if a problem arises. But someone with a severe heart defect (Tricuspid Atresia, which I have, is considered severe) needs to have regular exams at the Regional Clinic.

A second set of guidelines were recently released. Titled The ACC/AHA 2008 Guidelines for the Management of Adults with Congenital Heart Disease, these guidelines were created by the American College of Cardiology and the American Heart Association, and most likely you will never need to read them. (If you want to see them, click HERE; and if you want to download them as a .pdf file, click THIS LINK. )

The ACC/AHA guidelines are an instruction manual: The best ways to combat a problem, based on the best available evidence. As such, the Doctors who work at the Regional Adult Congenital Heart Defect Clinic probably have several copies of this document available, but it will be in the group reference library, not in the waiting room. (And it’s best to leave the waiting room magazines alone and bring your own; germs can’t read but they can use a book to move around.) So even though you may never see a copy of these guidelines, they exist and are an important part of Congenital Cardiac Care. The ACC/AHA guidelines do not replace Bethesda 32; rather the two reports compliment each other.

So even though it may seem that you have very few options as you age, Congenital Cardiac Care for adults is improving.


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