It is hard to find personal stories about adults with CHDs. I am most interested in the ones with TOF of course. I'm happy to share that I found this:
The blog Inspiring Hearts is by an adult with a CHD. She has included interviews with other adults with heart defects, including TOF. If you click this link it will take you to the 3 interviews of adults who have TOF.
Thanks so much for sharing those stories with us, Teri!
From a medical viewpoint, those 'inspiring hearts' are living longer and longer and the medical community is having to catch up. There are many cardiologists for adults with acquired heart diseases, but most that work with congenital heart defects specialize in pediatrics. That means there is a whole new field emerging since these patients did not survive to adulthood in the large numbers they do now. This article addresses this and some other challenges of long term CHD treatment: From 'Blue Babies' to Healthy Adults.
And finally, this blog that I've talked about before did a really nice post on adults with CHDs for CHD Awareness Week. The common theme I noticed was that many of them advise against being overprotective parents. Click here to read what they had to say. Two of the 17 are adults with TOF.
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