12/3/2012 1:21 PM
To give you a little history about me: Until 8th grade I thought I was a totally normal kid, played sports etc. but I needed a physical for an allstar football team I was selected for, and we discovered that I was born with PDA (Patent Ductus Arteriosus) - this is a little valve that closes when you take your first breath as a newborn. My PDA never closed and mixed blue and red blood in my heart.
I also had a Bicuspid Aortic Valve (2 leaflets instead of 3), which started leaking and in turn enlarged my Left Ventricle. This combination was diagnosed and I was sent to CHOP in 1989ish?
So they did all of their tests, I was poked and prodded, and they recommended I get an umbrella closure on my PDA to avoid invasive surgery. That was approved in 1990 and I got a double umbrella closure via a catheterization. (Still to this day a procedure that was not done very much but was 100% successful for me).
Later in life it was known that I would need an Aortic Valve. Fast forward to 1995 and after my Freshman year of College (Freshman Year, I played Baseball and Wrestled (National Qualifier Level) it was decided I get a surgery. CHOP recommended a procedure called the Ross Procedure (where they take the patient’s Pulmonary valve and put it in the Aortic position, then get a cadaver Pulmonary valve and put it in the Pulmonary position).
We loved this idea as it was my tissue etc. No blood thinners, I was very active, played baseball, wrestled etc. so we went with that procedure.
Fast forward to 2006ish? and the valve is leaking moderate to severe, the root of the Aortic Valve is at a severe condition. I needed another surgery, CHOP knowing I did not want to be on Coumadin suggested a procedure called the David (tighten up the root with Dacron material to reduce leakage and strain on the valve). We went along with this procedure and it was as much of a success as it could be.
Fast forward to last week: We decided to finally repair the root properly and install a St. Jude Valve. I am now on Coumadin and several other new meds but I feel amazing!!! For the first time in my life I no longer have Aortic insufficiency!!! My Pulmonary Valve still leaks mildly and we are watching it closely (one day I will need to replace it but will go the route of a Melody Valve through catheterization process).
So as you can see I am very involved in my own case but feel it would be criminal not to share my knowledge and passion for life.