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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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Express Yourself

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Bob

Mar 22

Posted by: ACHA
3/22/2013 1:29 PM  RssIcon

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.

My family immigrated to the US from Holland when I was 5 years old. After a fairly normal childhood I went on the road as a professional musician in 1974. A few years later I was ready for a career change and started to pursue aviation as an airline captain! It was at that time that I was diagnosed with congenital aortic stenosis – at 22 years of age I had heart disease.

My airline career was grounded – permanently.

In 1994, after 15 years of living an "adjusted life" – reducing my sports, being careful with diet and such – it was finally time to intervene. My breathing had become compromised and my heart was becoming too enlarged. Because of my age (37) I opted, after careful consideration, for the Ross Procedure as a solution to my valve replacement.

Because I only have 500 words here, the long and short of it is that 6 months later I would need to have my donor pulmonary valve replaced. What happened? No one would or could tell me. 18 months later, YES-once again the pulmonary valve went bad.

This 3rd surgery was performed by Dr. Ron Elkins in Oklahoma City and has lasted to date, with the exception that the original replaced aortic valve had worn out after 17 years and I had that replaced in December of 2011.

Whew. Four times.

I am now 56 and all things considered doing just fine.

With my life experiences in show biz as a musician, a college professor, a stint selling real estate and my general creative and entrepreneurial nature I have written about this amazing experience. Trust me – as you all know, getting cracked open and everything that goes with it is a life-altering event.

My desire to try and make sense of all of this has not only taken a dozen years but in all different directions as well. I’m not out to change the world - there’s nothing I can preach about: everybody knows that eating crap is bad for you. Ditto smoking, not exercising, blah, blah, blah. But my story, just like all of yours, is unique; which is all the reason we need to tell it.

Will anyone listen? I don’t know.

But telling it is the best thing I’ve ever done.

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