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Donors Artificial Heart Heart Transplants Adults Heart and Lung Domino Transplants Lvad's Carers Story Waiting For Transplant |
I had a 1 year old at home so I would sometimes compare them at the different stages babies go through, she did really very well until she was about 2 then I noticed that she was so much more quiet than her sister as well as very pale, but then she was blond and her sister was dark haired. I became concerned with her progress more and more as time went by, she had no energy and when she did play she would sometimes fall asleep during her play. I of course had been taking her to her pediatrician and she said nothing was wrong and that I should stop comparing the kids. Then 1 week before her 5th birthday a small town doctor told me he may have heard something different in her heart beat and sent me to his colleague who was a pediatric cardiologist, this was to be the first of many echos, within 5 minutes of the start of the echo the room filled with a group of doctors. They came into the room after I got her dressed and a nurse took her to color a picture for me and the doctor told me that Lizzie was very sick and close to death, and the only way we could save her was a transplant as soon as possible. I remember feeling like I was in a wind tunnel and I could hardly hear her, I started to shake and cry, I felt very alone as her dad and I were divorced at the time and my family all lived a long distance from me. I took her home and within a week I was at the Mayo clinic in Rochester Minnesota going through the process to get listed for transplant.
When I saw her for the first time I was shocked… so many tubes and wires I was so scared for her, her lungs started to bleed and they talked about the fact that they were doing everything they could that it was all in Gods hands at this point. I prayed and prayed for my baby. After about 4 days they told me that she needed to come off the ECMO due to the fact it was beginning to damage her other organs, this was terrifying. I had asked the doctor what would happen if the heart still didn’t beat on its own and she told me that at that point there would be nothing they could do for her. After what seemed like hours the nurse came and told me that it was beating on its own!!!! She stayed in the hospital a total of about 3 months and we spent another month at the Ronald McDonald house there in Rochester. During all this time I had my other daughter with me as much as possible and when I couldn’t she stayed with my mom. Lizzie has done very well since her transplant with only 2 episodes of rejection, both of them minor. She does have some learning disabilities and memory trouble so I home school her to help her avoid the torment of the other kids at school… we tried public schools and it was a disaster for her. Today Lizzie loves animals and really wants to be a model, she also loves photography, her phone and the computer. She is full of life and a real joy to be around. I thank God every day for my girls.
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"It took me more than two years before I felt confident to go out without feeling anxious and self-conscious." |
My daughter Lizzie was born early, at 27 and a half weeks, she weighed 2 lbs 14 oz. She had a very rough time but finally I was able to bring her home.
Lizzie got her new heart on April 12th 1999. After she had been in surgery for several hours the doctor came out and told me that the new heart wouldn’t beat on its own and they hooked her up to a heart lung machine. My knees buckled and I fell to the floor, I again pulled myself together and waited until the time I could see her, it took a long time due to the difficulties they were having with the heart. 
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