Kaleb at 9 weeks 4 days

Tuesday, February 1, 2011

A Little Bit About Me And Tricuspid Atresia

I thought I'd right a little blog about my CHD since it is going to be CHD awareness week soon. I'm gonna share as much as I can but honestly this heart stuff has always not set well with me. Before my third open heart surgey at 25 the doctor sat  us down to explain what he was gonna do in detail and I told him he could explain it to my mom and cousin while I put my fingers in my ears and sang lalala. He didn't really agree to that so I just zoned out.

 I was diagnosed with Tricuspid Atresia when I was three months old and had my first open heart surgery very soon after. If you don't know tricuspid atresia is a type of congenital heart disease in which the tricuspid heart valve is missing or abnormally developed. The defect blocks blood flow from the right atrium to the right ventricle. I'm not sure exactly what when on during that first surgery. I believe there was a vein taken from my right arm and put somewhere in my heart. Now you can't get a blood pressure reading from my right arm. I'm sure even at three months I was trying to zone some of this out.

Years went by and all the time I was waiting to have my second surgery. Have you ever heard that saying.. When your young you think your gonna live forever?  Well I think that is a luxury kids with CHD never have. When I was seven I went in for my second open heart surgery. The fontan which if you don't know  is a palliative surgical procedure used in children with complex congenital heart defects. It involves diverting the venous blood from the right atrium to the pulmonary arteries without passing through the morphologic pulmonary ventricle. I'm not really clear about what all that means myself but it was done to me and to my care bear. He was all bandaged up too when we came out of surgery.

Many more years went by and I was ok, I was doing very good with someone with my condition. Then when I was around 25 I started feeling really bad so I went to the doctor and found out my heart had become enlarged and  I was going to have to have another open heart surgery. My first thought was just not to do it. I really thought I could be content with just living until I died which the doctor said would be about a year form then if I didn't have the surgery. With very much love and support from my friends and family I did have the surgery in June of 2002. After the surgery my doctor said that my heart had become as big as a basketball so they'd had to cut some of it out and do some reconstructing to it and I had a maze procedure done. In maze heart surgery, a heart surgeon creates multiple cuts into the upper part of your heart (atria) in an intricate pattern, or maze. Your surgeon then stitches the incisions together to produce scars. Because the scars do not carry electrical signals, they interfere with stray electrical impulses that cause atrial fibrillation. This restores your heart's regular, coordinated heartbeat. I had a hard time recovering from this surgery. I was in the hospital for almost two weeks.

I was good for a while after this surgery but then I got really sick in March of 2003. My stomach got really huge and I couldn't get out of the bed somedays. So again I went to the doctor, and if you don't know I've had the same cardioligist since I was that three month old baby. We've been through alot together and kinda have a love hate relationship. I think because I'm not a good patient. I always wanna do what I wanna do not always what she thinks I should do.I do trust her with my life and she is usually right, but this time in the hospital she didn't know what was wrong with me. So I was admitted and stayed for a week while they ran tests on me, and I've had so many catheterizations that they can't go throgh my legs anymore due to scar tissue. They have to go through my neck which really hurts if they don't knock you out all the way.. After a week they decided I was in heart failure and that all the fluid from my heart was just kinda sitting at my stomach instead of going to my ankles like most people. I was sent home and told to live like a slug until I could come back the next week and have my pacemaker implanted. So on April 3, 2003, which happened to be my neices birthday, I got my first pacemaker.

Since then I've had my pacemaker changed once. Just this past October. Everything has been fine with my heart since the first pacemaker and I pray everyday that it will remain that way. I did give birth to my wonderful son in May of 2004 totally against the advice of every doctor at Duke I think but I'll save that for another blog :) and I'm sure if I left any major details out about my heart stuff my mom or cousin will let you know. They keep up with all that better than I do anyway.