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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.

These stories are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

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Jon

By CaptainCardio on 2/6/2013 4:15 PM
I was born in 1971 with Pulmonary Atresia, a small ASD, and a small right ventricle. I had my first open heart surgery the day after I was born. During that surgery they made a hole between the right ventricle and the pulmonary arteries. My second surgery was just before I turned 4. They enlarged the original hole and put a stitch in my ASD to close that up.
By CaptainCardio on 1/29/2013 8:58 AM
I was born as blue as the clouds in November of 1984. I was born with tricuspid atresia. I had two shunts before I was 6 months. I got a Fontan at the Mayo clinic when I was 4. As a result of that surgery my SA node was damaged so a pacemaker was put in when I was 5.
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.
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.
By CaptainCardio on 1/15/2013 4:24 PM

I was born in South Dakota in 1961 with tetralogy of Fallot. My first heart procedure, a BT Shunt, was at a ripe age of 18 months at the Variety Club Heart Hospital in Minneapolis. After that surgery by Dr. Varco, I got along as best I could until 1969 when we returned to Minneapolis to have the ToF repaired.

I remember as a young boy trying to be involved in baseball with my friends and squatting in the outfield because I had figured out that seemed to help with shortness of breath. The ToF repair went very well and in short order I was running, and playing much like a "normal" kid. I would see a cardiologist occasionally while I was growing up, but for the most part I had no heart related concerns.

By CaptainCardio on 1/11/2013 4:34 PM
In 1965 I was born with congenitally corrected transposition of the great arteries; Dextrocardia (heart on the right side); associated ventricular septal defects and atrial septal defects, subpulmonic stenosis. As a bonus all my vital organs are opposite, but function normally. I’m posting this so Craig knows that there are more of us “oldies” out there with CC-TGV.
By CaptainCardio on 1/9/2013 8:57 AM
I am a 52 year old man with congenitally-corrected transposition of the great vessels. I did not know I had this condition until I was 31 years old. I played both football and baseball in college and had always been very active. My condition was discovered by accident when I underwent a routine EKG. It was determined that I had 3rd degree heart block and a pacemaker was implanted.
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