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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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Jan 28

Posted by: CaptainCardio
1/28/2013 11:55 AM  RssIcon

I am a 35 year old single adult woman with CHD. On my second day of life a nurse heard a murmur and my story began. By 3 weeks old I was in congestive heart failure. I can't even imagine what that was like for my parents. I have Shone's syndrome plus other anomalies. I have a coarctation of the aorta, subvalvar aortic stenosis, parachute mitral valve, left superior vena cava, and all types of arrhythmias.

My coarctation was fixed a year ago with a stent and I was given an artificial aortic valve and a Dacron patch when I was 13. I have a defibrillator and am now pacemaker dependent. I'm not the typical Shone's syndrome patient. I'm not the typical anything and I am used to the doctors being confused by me. I am now waiting for a heart transplant due to CHF. The problem is it’s hard to move up the waiting list because the UNOS rules aren't made for CHD patients. So, both myself and my doctors are frustrated. I would love to hear from others who are navigating the same frustration!

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