By CaptainCardio on
2/12/2013 9:56 AM
I was born with coarctation of the aorta and patent ductus (PDA) in 1959. I only know the beginning story from my mom, who is a very persistent nurse. She says that she always knew there was something wrong with me but doctors would not listen until I was very sick. Luckily they finally found someone who did help them and then I had surgery.
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By CaptainCardio on
1/28/2013 11:55 AM
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.
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By CaptainCardio on
1/18/2013 4:10 PM
In April 1989, I was born with hypoplastic left heart syndrome, transposition of the great vessel, septal defect and coarctation of the aorta. I had my first heart surgery at five days old at Children’s Healthcare of Atlanta at Egleston. I was only given a fifty/fifty chance of survival. This was the first of a two staged surgery. I would have to have another one around two years old. I came home after ten days but had to be fed through a tube placed in my nose.
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By CaptainCardio on
1/16/2013 11:12 AM
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.
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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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