Treating Adults with CHD

I came across this article today not realizing it was first published on August 20th.

Needless to say, I've been inspired to write a post about it.

As an adult who is a "survivor" of this disease, I applaud The Wall Street Journal for bringing national attention to this complex disease. I saw a pediatric cardiologist until I was 19 and since then had to travel to find my annual care. By about 17 I was starting to get uncomfortable with going to a pediatric cardiologist where the majority of their patients are 12 and under. By 19, my cardiologist felt comfortable to give me a name of a cardiologist specializing in "adult pediatric cardiology" (the type of care featured in the article) in California. So, from 19 until this last summer I went once a year to UCLA Medical Center for my annual care. Both these cardiologists have since retired and thankfully I can drive to my cardiologist's office every year (3 hours to Philadelphia).

The biggest difference between my situation and the situation most of the patients that were featured in the article, is I've known since the time I could understand the situation that life-long care would be necessary and multiple surgeries would be required.  My next surgery will be open heart surgery #4 for me.

More than anything, I'm thankful that medical technology and research have allowed almost 90% of children born today with a congenital heart disease live to be an adult. That being said, more research is required and there's still those 10% who die prior to adulthood and no explanation for why the heart doesn't develop properly in 1% of all children born in the US.

I can only hope that as more and more "survivors" live to adulthood, the disease will get more attention and more money will be raised.