I am a 33 yr old Single white male who was born with Aortic Stenosis. I had been seeing a cardiologist since I was 4 months old and have now been moved on to a new team of cardiologists as the one I had been seeing specializes in pediatric cardiology and I am definitely an adult in body and age but not at heart. I had my first open heart surgery at 2 years old to open up the valve (balloon angioplasty) and cut the aortic valve into 3 leafs (since there was only 2 and there is supposed to be 3, one was the size of 2 combined). I am a member of the SCA (Society for Creative Anachronism)
, which is a world wide organization that "re-creates" medieval life styles and activities. Lots of new friends from all walks of life all over the area I live in and most are helping me get through this rough patch.
Since July 19th, 2010 when I signed myself into the ER for Difficulty breathing and coughing up blood I have been informed that I was in CHF (Congestive Heart Failure) and all 3 cardiologists, the ER Doctor and the in house Hospital Doctor all said that I should have died with the episode I had had on July 5th. They all said the same thing that there is some higher power holding e up or something.
Since my 2 day stay in the hospital I have seen my original cardiologist, who I had since I was 4 months old, and now another group of Cardiologists that will continue his work. It's a unanimous decision that I need my aortic valve replaced. The final decision is that I will be receiving a St. Jude's Bi-Leaf Mechanical valve. The surgery to do this is now tentatively scheduled for Wednesday October 20th, 2010 in Albany, NY, US at St. Peter's Hospital. The surgeon is going to be Dr. Edward Bennett who, it is believed, was present when I had my original open heart surgery at 2 years old, just waiting on them to find the original op note to confirm.
It's been almost 31 years between the 2 operations so I had a great run on what they thought would be a temporary fix. I can only hope that I have the same luck this time around. I am surrounded by friends and family who are supporting me and have found who are true friends and who are just there for what they need and want. We all knew this day would come at some point in time but I wasn't quite ready for it to be now. Especially after all the times the doctors had said it would have to be replaced by the time I was 9, then 10, then 15, then 25 and then 35. I am now 33 so the last one was pretty close.
Since the Hospital stay (September 19, 2010) I have dropped from 280 lbs (most was probably the fluids in my lungs and so on) down to 233.5 lbs (September 15, 2010) and will continue to drop weight as I need to go another 60 lbs. The low sodium (2 Grams/2,000 mg a day) diet and lasix (furosemide 40mg) have probably helped a lot. I am still going to events and practices and classes as normal since as I see it I should and will make it through this speed bump in life. My friends and I are planning on attending several events after Surgery.
On Monday September 20, 2010 I will have a catheter done to check things out internally. This may change the surgery to a closer date but I think it will remain the same.
I guess this is all for now. have any questions or comments let me know and I will be glad to answer them.
This is Deer, he's been with me since before my first operation when I was 2.... 31 years always been there when I needed a hug