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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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Jan 16

Posted by: CaptainCardio
1/16/2013 11:12 AM  RssIcon

A fall out of bed when I was four years old led to an ER visit to evaluate a potential concussion. That internist turned to my mother and said,” Tell me about your daughter's heart." And thus we had the first indication that I was put together a little differently.

I have Shone's syndrome - my coarcted aorta was repaired shortly after that ER visit, my bicuspid aortic semilunar valve isn't standard, but works well enough as do the too-small muscles on my mitral valve. I've also had valve-sparing aortic root replacement when my aortic dilation reached a point that the risks of rupture outweighed the risks of surgery.

I've been fortunate to be able to remain active and employed - I have a full-time job and a part-time job, a spouse, and two children, both of who I was lucky enough to carry to term. My CHD has been a part of my life for as long as I can remember, but my parents did a good job of giving me the skills to negotiate my own care and I continue to have loving support from both family and friends.

I have made the active choice not to let my CHD define who I am, but rather to incorporate it as an element in my overall identity. Even if I wanted to, the scars on my body would be hard to hide so why bother? I continue to be seen by CHD specialists and though I know that will always be part of my life, I also know that I will always be so much more.

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