Tuesday, October 2, 2012

Born With A Broken Heart

I was asked by Annette, found of Born With A Broken Heart to share my story. I need a place to write it, and since Microsoft is being bitchy, I thought I'd write it here. 

My name is Jessica, but I prefer Jessi. I'm 23 years old and I am surviving CHD.  I was born October 3rd 1989. I asked my mom a lot of questions about her pregnancy and delivery with me. It was a normal pregnancy, no problems what so ever. But now looking back she remembers her doctors would always listen to my a heart beat a little longer then normal. Maybe they heard something, but it 1989 and they didn't have great technology back then. Labor and delivery where normal and I was born in the early morning. Shortly before discharge my mom was trying to nurse me and I just wouldn't wake up and eat. The nurses told her she just didn't know what she was doing, but I have an older brother, she knew how to nurse. So the doctors to me away and managed to wake me up enough so I would cry. I turned blue. My mom knew something was wrong when the doctors and nurses came back without me. They told her I had a heart problem, it wasn't anything serious, probably just mitral valve prolapse and I'd be fine. I got my first ambulance right before I was even 24 hours old. When my mom finally got discharged her and my dad came to see me, and what awaited them was a much worse diagnosis. I have Tricuspid Atresia, Severe Hypoplastic Right Ventricle, Mitral Regurgitation and a VSD and an ASD. My parents where told the ASD and VSD were the only reasons I survived my birth. I had my first surgery, via cardiac catherization at 2 day old. A balloon septostomy to make my ASD and VSD bigger so the blood would continue to flow. I got to go home a week after my birth and did okay until I was 3 months old. That's when they had to do my first BT shunt. At 9 months old I needed another BT shunt. Both where done through my back and I have scars underneath each shoulder blade. At 1 1/2 I had my first open heart surgery. I went in on mothers day and got out on fathers day. They did the glenn, but it failed and they couldn't get me off bypass. So they did another procedure (this one I don't know the name of) and again, they couldn't get me off bypass. My heart just wouldn't beat. They had one more option but they weren't sure if it would work, it was so new. But it was all they had left, so they did the fontan. Luckily it worked and they finally got my heart to beat. But a 4 hour surgery turned into a 12 hour surgery. Because I was on bypass for so long there was swelling in my brain and I had a massive seizure and was in a coma for 2 weeks. Recovery was hard, but I made it. After that I had cardiology appointments once a year and daily medications. I had a lot of issues with pneumonia and my parents had to buy their own nebulizer to keep me out of the hospital. I got sick easier then "normal" kids and I got tired faster, but I had a normal childhood. A good childhood. When I was 18 I was told I had severe heart failure and needed another open heart surgery. I had a cardiac cath in preparation and a lot of appointments where it was found out I had sinus bradycardia and atrial fibrillation. They also discovered my heart was dilated and up against my breast bone. It caused me severe pain. I was terribly sick and my doctor got me in for surgery really fast. July 24, 2009 I had the fontan revision, maze procedure to fix my atrial fibrillation, atrial reduction (they removed part of my atrium) and a pacemaker implant to help the sinus bradycardia. Its been a crazy 3 years since my last surgery. I was in a car accident in November 2010 and was told the only reason I survived it was because my pacemaker kept my heart going. The maze procedure failed and my atrial fibrillation came back about 2 months afterwards. I had a cardioversion in September 2011and we are watching it again and if it gets bad again we will try an ablation. It's now called chronic atrail fibrillation. At my last appointment my doctor told me I have the best ventricle function post fontan out of everyone he see's in his clinic, and I'm quite happy about that. I've been diagnosed with an auto immune disease and I'm in a lot of pain, but I try to keep going. There has been issues with my pacemaker and they will most likely need to replace the leads, if not the whole thing. Which means they would need to crack my chest again. But as of right now we are just watching it. He doesn't want to do surgery just yet but is pretty sure it will need to be done. My cardiologist says it's just a matter of time before the heart failure comes back and I'll need a transplant. But I'm taking it one day at a time. I'm enjoying my life. I'm in college to get my degree in early childhood education. I love kids and want to work with them. I'm trying to get disability because as much as I'd love to work I know I can only do it part time. I love meeting new CHD families and go to visit children in the hospital whenever I go for my appointments. I also love meeting them outside of the hospital too. I've been told I give them hope and I am proud of that. They help me feel not alone. I'm enjoying being an aunty and being in school. I love my life and am thankful for the doctors who gave me a chance to live it.

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