Introducing myself

My name is Steve. I am currently 42 years old and I was born with a Congenital Heart Defect known as Tricuspid Atresia. Literally, my Tricuspid valve inside my heart is missing. It's not that it's just not there, but it never formed - there is a wall where it should be, and my right ventricle is pretty much cut off from the rest of the heart. The only reason I am alive is because of holes in the walls of my heart that allow the blood to flow through the heart. It takes the scenic route, but it get there.

My first operation was in 1967 at Johns Hopkins Hospital in Baltimore, Maryland; I had a second operation at the University of Alabama at Birmingham (UAB) Hospital in 1977, and in 1988 I was back at UAB for a third operation. The 1967 and the 1977 operations went great, but the 1988 operation went wrong from the beginning and I barely got out with my life! (So, I never have surgery in any year that does not end in "7"!)

I did well in high school, graduated college, worked for ten years in a small museum (quit because of economic problems, not health problems)... and joined the ACHA. The ACHA is the Adult Congenital Heart Association, a non profit group that supports better research and funding for adults with Congenital Heart Defects. I went to Washington DC with the group and met a lot of other adult CHD survivors - amazing to me, since I had grown up in a town of 450 people and had NEVER met anyone else with a heart defect.

In May of 2008 I went to the ACHA's national convention in Philadelphia, and met over 200 Adult Survivors and our cardiologists. This was really something for a guy who had no idea that there were others living with a heart defect! I have a photo of EIGHT people who all have Tricuspid Atresia, and that wasn't all of the TA's. A few of them I met after the photo was taken, and a there were a couple I had met that couldn't be found before we took the photo!

They even let me speak to the entire ACHA - how that happened, I have no idea. I was called about a month beforehand and asked if I would like to speak. I was scared to death, but it went well, and no one threw anything at me. And I think that's when it happened. That's when I became a CHD Advocate.

I write a blog named "Adventures of a Funky Heart!" about living with a heart defect and some of the things I've seen and done. I'll talk to any person or group that wants to hear about survivors, I've written some on the history of Cardiology and Heart Surgery, and I've been to Baltimore with the President of the ACHA. We stood up in front of a Social Security/Disability Policy Review Committee to try to tell them about living with a heart defect. They seem to understand the heart problems that occur as you age, but CHD's seemed to be over their head. Hopefully we did some good.

So I'm here as an older survivor - if you have a question, ask. Pick my brain, I'll tell you what I know. (Remember that I am NOT a doctor and WILL NOT give you medical advice.) I'm also here to learn, because there is no way that I can know it all. You can teach me, and hopefully I can share a bit of what I know.

Steve