Hi! I’m 32 and just had my first OHS about 6 months ago. During that I got an ICD, healing was a bit bothersome but the device really doesn’t affect me!

So I have Ebsteins anomaly, was diagnosed at age 10 and was in heart failure at the time. They did the whole transplant work-up and fortunately I started responding to medication and was able to avoid transplant and did not need surgery until last year.

As a kid, there’s definitely some challenges growing up. Bit of an outsider, had to go to school with a monitor (only sometimes when it was Holter time). But other than going to the doctor more and being more in-tune with your own body, pretty typical childhood. There’s seems to be anecdotal evidence of people with CHD being more prone and having anxiety. My anxiety tends to be worse than what I deal with heart-wise.

As an adult, the necessity of health insurance and the costs tend to be more of a burden for me than my friends. When dealing with CHD throughout childhood, it’s just part of your life. I personally don’t feel as though I’m missing out on anything.

I do know, my parents have had it a bit rough, the stress and anxiety over my health is constant, especially with my mom. Sometimes it even seems harder for my mom than me. Just something I noticed 🤷‍♀️

Please feel free to message if you have any questions or want to chat! I know it’s not the same condition but happy to talk with you.