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By submitting your story and/or photo to ACHA, you are giving permission for your story and/or photo to be displayed on our website. The stories on this page are the property of the individual who has provided it. Stories may be edited for content. The experiences and opinions expressed are solely those of the individual, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied within these stories.

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By CaptainCardio on 4/15/2013 9:45 AM

How-to guide for Truncus Arteriosus:

 

1. Be born with one outgoing valve, one ventricle, and a heartbeat that sounds “like a washing machine.” Through surgery, receive a VSD patch, prosthetic pulmonary valve and conduit.

2. Fail to understand the importance of this until Elementary School, when the mile run becomes mandatory for everyone except you. Glare at kids who call you “lucky”, but enjoy standing at the finish line with a stopwatch.

3. Be told by your cardiologist, every year from 9-17, that you will need surgery to replace the valve/conduit “probably next year.”

Bob

By CaptainCardio on 3/22/2013 1:29 PM

We all have once-in-a-lifetime experiences—right? Our birth and death for starters. But even though they’re once-in-a-lifetime to ourselves, these are common to everybody.

What makes me so special? Not much—other than having the dubious distinction of surviving not just one open heart surgery, but four.

My name is Bob and I'm not fat, I never smoked and I always got plenty of exercise—yet, in a span of three decades I underwent four separate open heart surgeries. Unprecedented? They were to me.

By CaptainCardio on 1/8/2013 4:20 PM
My first heart surgery was for coarctation of the aorta at age 2. For many years after that I followed up with my pediatric cardiologist and was always given a clean bill of health. At age 25 I ran the Chicago marathon. Around age 30 I stopped going to see the cardiologist (my bad decision).
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