I am 15 years old. I was diagnosed with an aortic aneurysm when I was about 8 years old. Each year I would have an echocardiogram to check for any decrease in size of the aneurysm. Each year it just grew more and more. Doctors tried to find a cause for my aneurysm but because my medical history was so complex it was more complicated to do so. Last August I went to see my cardiologist for my annual echocardiogram and on it he found something that concerned him a little bit that it may have torn. So I had a CT scan done that afternoon. I brought the results back upstairs to the doctor. He looked over them. It only took him like 10 minutes but it felt like a lifetime. I was scared to death at what the results showed. When he came back in with the results and his partner he sat down and explained how the CT scan showed that my aorta was a little bigger than he had original measured on the echocardiogram. So he recommended we see a cardiac surgeon and offered to make the appointment for that day. We agreed. So a few hours later we saw the surgeon. He showed us the actual CT pictures and when I saw the aneurysm my jaw dropped to the floor. I was so shocked. 3 weeks later I was being prepped for open heart surgery. I was scared to death. I had one of the worlds greatest heart surgeons from Johns Hopkins Hospital doing the surgery so I knew I was in good hands. After nearly 5 hours I was taken to the ICU after having the root of my aorta successfully replaced with a stent graft. But, a few hours later the doctors found that I had developed a complete heart block and that if it didn't get better in a week or so they would implant a permanent pacemaker just in case. My parents were devastated. With in a few days after my surgery I was up and walking. After a week of watching my heart block not get any better on my birthday they made the final decision to put the pacemaker in but couldn't do it till the beginning of the week so I spent 3 more days in the hospital. Finally, I had my pacemaker successfully implanted and was able to go home the next day. Finally after 11 days I was home. Those were the worst 11 days of my life. But by the grace of God my aneurysm didn't tear or burst and I'm still alive today. unfortunatly two weeks later one of my pacemaker wires had slipped so I went back into the hospital for another night and had a lead revision surgery. What a long year its been. I've come along way this year. i may still be trying to fix my health but I actually feel safe doing things again. I feel different in good ways and bad ways. But at the end of the day thats fine with me. Counting my blessings keeps me going. I've lived around doctors all my life so i don't know any different. being a teenager now i realize my life is a little different than other kids and sometimes i do wish i was like my friends. My geneticist said he's very close to a test that could hold some of my answers as to why I got an aortic aneurysm in the first place and why theres a bunch of additional problems as well. Elaina |
