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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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Jon

Feb 6

Posted by: ACHA
2/6/2013 4:15 PM  RssIcon

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.

I was an outdoors enthusiast growing up and had no effects from my CHD until I turned 16. I developed atrial flutter and tried a whole host of medications to prevent that rhythm over the next 4 years. I then had an AV Node ablation and a pacemaker put in to run the ventricles. I then developed congestive heart failure and ventricular tachycardia at the age of 30. They put in a bi-ventricular ICD and started me on a bunch of new meds then sent me to Boston to get looked at for possible surgery. They decided my heart function was too poor and I wouldn't survive surgery.

This began my campaign of eating well and exercising to get better. This last summer I had my third surgery where they essentially rebuilt the right side of my heart. This is what they did: they removed a section of my right atrium to allow it to pump more efficiently, rebuilt my tricuspid valve, remodeled the bottom of my right ventricle to allow blood to flow out of the ventricle better, put in my first ever pulmonary valve, performed an atrial sinus node ablation and Maze procedure to eliminate my afib and a cryo ablation to reduce the incidence of v-tach.

These days I spend my time playing guitar, ukulele, walking, lifting weights, and taking pictures. I feel really great and I'm hoping that soon I will start working again.

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