Living with Congenital Heart Disease: Are You Lost to Care?

Living with Congenital Heart Disease: Are You Lost to Care?

If you knew a family member or friend had a potentially dangerous or catastrophic health issue but wasn’t seeing a doctor for it, would you recommend that they see one?

I think the vast majority of us would.

In my last post, I explained how patients born with a heart condition get surgically “repaired” in early childhood and then along the way stop seeing their cardiologist. This is a potentially dangerous situation because many things can change with the heart and original operation and something may go wrong 5, 10, 15+ years after their initial surgery.

In the medical community we describe these patients as being “lost to care.” There’s about 550,000 teens and adults who fit this description in the United States, but these statistics may even be underestimated. We define lost to care as someone who is not seeing a cardiologist specifically trained to care for, monitor, and treat adults with congenital heart disease (CHD).

So how do you know if you, a family member, or friend is one of these approximately 550,000?

Here are some questions to ask, that could help you determine if you were born with a heart condition and are now lost to care:

If you answered “yes” to questions 1, 2, or 3, you are very likely to have congenital heart disease (CHD). Please schedule an appointment with a cardiologist who has expertise in CHD.  My previous blog post offers a helpful explanation for why this is so important.

 

 

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Andrew Redington, MD

About the Author: Andrew Redington, MD

Andrew Redington, MD, is the executive co-director of the Heart Institute and chief of Pediatric Cardiology at Cincinnati Children’s. He specializes in both pediatric and adult congenital heart disease and has written more than 300 peer-reviewed publications, 30 book chapters and has co-edited seven books. Dr. Redington lives in Cincinnati and in his spare time enjoys the amazing arts the city has to offer.

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Comments

  1. Rick July 26, 07:51
    Great blog! I love the way you created a simple (and easy to follow) series of questions to help direct those who are lost to care to getting appropriate ACHD care. Well done.