My son has PFIC Type 2 and we tried every type of medication available to him however none have been successful so on his 3rd birthday he has been put on the liver transplant waiting list and i am considering being assessed to be a donor for him.
Any experience similar to this and comments would be greatly appreciated.
Best Regards
Jamie
Hi Jamiemack81,
Our son had the same condition and had a transplant aged 5. He’s now flourishing (aged 9).
When he was going on the list I asked to be considered to be a donor. We were extremely lucky though and his operation took place very quickly. In the event I was glad not to have been the donor - it meant I could support him as much as possible, and that his dad and I could support each other more easily too.
From the day of his transplant he hasn’t itched, and has slept through the night. Wonderful.
It’s a very personal decision, and whatever you decide will be the right thing for you and your family.
I wish you all the luck in the world.
X
Thanks for your reply Sarah, i'm glad to hear your son is flourishing. A night without itching and sleeping all night sounds great. lol.
I had a lot of tests last week and am still waiting to hear if i am compatible so should find out in the next few days.
Thanks again. x
Good luck with it all.
The itching and poor sleep is so hard but these days our son can’t even remember that he used to itch all the time. It’s amazing because it was such a big part of our life. Glad he doesn’t really remember it even if we do!
Hi, my son had transplant and was only on the list for 2 weeks before getting a liver. He is now nearly 16 and coming up to 14 years post transplant. If he needs another transplant in the future I would definitely be willing to be a living donor transplant and I fully understand your thinking.. thinking of you and your family at this time.
Thanks for your reply Stuart.
How is your son now? Does he keep well?
Regards
Jamie
Hi Jamiemack81 are you in the UK and registered with CLDF? We can link families for peer support and also have resources that can support you through this journey. You can view some of them on our website but if you are in the UK we can post them out for free x
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