Alpha one

[karlyembleton-87]

hi my daughter has alpha one antitripsin defencey she will need a liver transplant because of this she also has a enlarged spleen and photohipenshion not sure on the spelling sorry about that was just wondering if any one else had this happen to them ? she will be 2 soon

[Caitlin-CLDF Partner CLDF]

Hi karlyembleton-87 , have you had any of the leaflets we provide on alpha-1 and other liver conditions? They're available on our website: childliverdisease.org/Infor...

There are also a number of stories from other parents whose children have alpha-1: childliverdisease.org/Infor...

And don't forget you can always call the CLDF team - they're on 0121 212 6023 if you need to chat.

Hannah

[annexxxjarrett]

Hi, you must be going through a difficult time right now with your little girl. My daughter also had alpha-1 atd, and had a liver transplant aged 3 and a half. I think you may mean that she also has portal hypertension; my daughter had this too, as well as an enlarged spleen (which is common when things aren't right in the body). My advice would be to look at the CLDF information leaflets (as per Hannah's reply), and talk to the doctors about anything you don't understand or are worried about. You don't say which hospital is looking after her. We were at King's, and the staff there were all fantastic, and I'm sure still are. It's a lot to cope with, and I feel for you. We had a difficult time, including for a year or so post transplant, but my daughter is now fit and well and living a normal life. She is 24 years old now! I wish you all the very best.

Anne x

[Maximillian1 in reply to annexxxjarrett]

Hi Anne,

Our little one born without portal vein to liver and with alpha 1atd. He is after transplant which he had 6 months ago but after year in hospital and his massive internal bleed year ago i found it hard to get back to normal life as that life threatening even chassing me and all i wish for is to get to mornal . Glad to hear that your girl is doing well as its important to hear possitive story and agree with you staff in kings college hospital is lovely soooo carrying and supporting. Anna i would like to ask if you have any problems after transplant . No problem to go back to school and travel for instance? Many thanks janka x

[annexxxjarrett in reply to Maximillian1]

Hi Janka,

You must be going through a difficult time at the moment. Is your son still in hospital? You don't say how old he is, so I don't know if he's missing school yet? My experience (although a long time ago) was that some children do have certain health issues post transplant, which just have to be managed. However, lots more do get over these initial problems and are able to go to school and have normal lives. I hope you will too! For the first two years after transplant my daughter had several rejection episodes and problems with different infections and like you, we wondered if things would ever be "normal" again. But after two years things settled down. She still had the occasional problem but nothing serious and she went to school and did well.

Travel really depends on how well your son is. The only issue we had was with travel insurance being so much more expensive - you need to shop around.

You are on a kind of journey at the moment, where you have to take one day at a time. I do hope things work out well for you all.

Anne

[Maximillian1 in reply to annexxxjarrett]

Hi Anne,

Thank you for your message I really appreciate that . Sorry I didnt come back to you strait away but I wasnt well as its been year when Max had internal bleed and they were fighting for his life . It still scares me even it was year ago . He is 18 monhts now so 9 months after transplant . He is doing so well no rejection no even after after transplant only virus once 3 months ago but he always looked well even when he was bleeding for 3 days and we didnt pick it up as he always smile. So it came by suprise and it make it harder as its impisdible to tell what is happening as his belly is still big. I know they said it take time to settle and be normal however i struggle to relax . So its good to hear story as yours. Wish you all the best and thank you for talking to me .

Janka

[Laura-k]

Hello! We have a 1 year old boy who is currently on the transplant list in Leeds. He has alpha 1, enlarged spleen and hypertension. I'm available for chats if you feel like it, it is a lot to take on x

[Maximillian1 in reply to Laura-k]

Hi Laura

How are you doing? Any news regarding transplant?

Janka

[Laura-k in reply to Maximillian1]

Hello! Harry is currently three weeks post transplant actually! He is doing beautifully well and we couldn't be more thankful

[Maximillian1 in reply to Laura-k]

All the to Harry !!!!

Hope you all well xx