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

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

Living with Congenital Heart Disease: Are You Lost to Care?
July 22, 2016
Andrew Redington, MD
1 Comments

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.

Many 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 are 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:

Are you or a loved one lost to care infographic.

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. This blog post offers more information on why it’s so important to find care.

 

 

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TAGS:
  • ACHD
  • adult congenital heart disease

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

Rick July 26, 2016 at 7:51 am

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.

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