Fix the Problem!

UPDATE, 6:12 AM Eastern Time: Katie is on my mind again… Preliminary reports suggest that the surgery may not have helped her that much, if at all. Get over to her website ASAP and encourage her parents.


Great news from the National Institutes of Health (NIH) and the Adult Congenital Heart Association (ACHA)… The NIH’s Partners in Research program will fund the ACHA’s first Adult Congenital Heart Defect research study! Titled the “Health Education and Access Research Trial in Adult Congenital Heart Disease”, (HEART-ACHD for short) the study will attempt to learn why those of us with Congenital Heart Defects often “fall through the cracks” after childhood and no longer receive good cardiac care.

This is a two year study, and ten of the largest Adult Congenital Cardiac Care centers are involved. Heart Moms and Heart Dads may not be very interested in this results of this study, but it is more important than you think. Imagine that moving from Pediatric Cardiology to Adult Congenital Cardiac Care is like crossing a river…. but the bridge has a huge hole in the middle of it. Some of us, by luck or design, are able to walk around the edge of the hole without falling in and continue with good heart care. Others stumble, and fall in the river. If we’re lucky, we catch something as we fall and are able to pull ourselves back onto the bridge, while others aren’t so fortunate.

Lifelong cardiac care is so important, especially to someone with a Congenital Heart Defect. As you age, not only do you have the problems you were born with, but also the effects of age began to set in. We’re susceptible to Cholesterol problems and clogged arteries, just as everyone else is – but with our bad hearts, the problem may manifest itself in a different form. So the transition from our “kiddie doctor” to an Adult Physician is critical, and right now there are too many ways to get lost in the shuffle… fall through the hole in the bridge, so to speak. Hopefully this study will give a “repair crew” something to work with as they repair the bridge and make the road to lifelong medical care safe to travel!

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2 Responses to “Fix the Problem!”

  1. Let’s meet in the Lobby…. « Adventures of a Funky Heart! Says:

    […] Here’s a press release about a Congenital Heart Defect (CHD) study that I told you about a few weeks ago. The HEART-ACHD Study will analyze data in an attempt to learn why adult survivors of CHD’s […]

  2. REACH for the goal! « Adventures of a Funky Heart! Says:

    […] for Adult Research in Congenital Cardiology. The two groups are already working together on HEART-ACHD, a two-year study of why adult CHDers “fall through the cracks” and  get away from […]

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