My name is Rachel I'm 24 years old and I've had not one but two liver transplants!
My first transplant was on May 14th 1992 at Birmingham Children's hospital and I had my 2nd liver transplant on 14th of January 2015 (both on the 14th! what a coincidence!) if anybody needs a question answered please let me know as I have been through an awful lot in my 24 years as a liver transplant patient and I would be very happy to be able to help anybody with any qualms wether it's about my transplants or anything else related
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OMGPinkJello
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Hi Rachel, appreciate your time and help. My little girl is on the list for transplant. She had BA and had Kassai done in 5weeks, she is not doing great. Thankfully she is not worse either. She is sticking to her growth and meeting milestones. But a transplant has become inevitable in the next 6months to 1 year.
What was your experience like in the early days post your first transplant and how much did it have an impact on your school and activities?
From what I can remember from a young age post transplant was that although I did miss quite a lot of school (due to infections,hospital appointments and vaccines) I've had a pretty normal life. The only thing that used to temporarily stop me was the fatigue but from an early age I was encouraged by both parents that if I was feeling tired in any sort of activity that I can stop , rest for as long as I had to (have a drink) and carry on if I felt that I could do. I even came 1st in one of my sports days at primary school in the running competition.my advice is to encourage your child (which I'm sure that you already do! ) and let her know that although she is poorly and is doing activities of any sort that it's perfectly ok to want to stop if she's feeling tired. I did struggle through high school but that was from my own personal experience which was in no way related to my transplant .encouragement and praise is key. since leaving school in 2008 I've been to college and passed my course with distinction, worked with small children and in several places serving food with no trouble to my health (minus the odd sniffle and appointment) and I've also been engaged for 5 years now
It feels so great to hear your story and I write this wiping off my tears of joy. I am so pleased to hear your experience and I pray for your good health and happy life.
My little girl is very active and joyfull as like never before. She is so loud too. Thankfully she is still holding on to her appetite for food so things are little easy for us. We are still waiting for the call for the transplant.
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Congenital hepatic fibrosis
1 week post kasai, baby crying a lot
BA - Kasai Procedure at age of 10 Weeks
Long term after Kasai operation 
Portal hypertension, enlarged spleen and liver damage 
