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:

Editor’s note: To help spread awareness for this important issue, we will be publishing stories of patients with adult congenital heart disease to our website and social media accounts under the hashtag #FacesofACHD. We hope you will read and share them, and tell us your stories as well. Together we can cut through the noise and raise awareness for these folks who need to seek care.