Live liver donor

[Laurajade1989]

Hello everyone

my 15 year old son Jamie is on the liver transplant waiting list but we’ve been told to expect a long wait due to the fact that he’s a popular blood group (o positive) and because his meld score isn’t high (he’s on the liver transplant list due to his portal vein blocking so his liver itself is in fairly good health)

I’ve put myself forward as a live living donor as he’s had 3 major bleeds from burst varices recently and I’m terrified at the idea of him having to wait years for a transplant incase he has another major bleed whilst waiting

Ive unfortunately been told it’s unlikely he’s a suitable candidate for a live living donor as the problem is with the portal vein not the liver so it’s likely he’ll need a full deceased liver but they’ll let me know for definite soon

I was just wandering if anyone else has been in this situation and what their outcome was

thank you in advance

laura

[AyrshireK]

There is a cracking support group on Facebook for people pre and post liver transplant where you may get more relevant answers. 'Liver Transplant Support UK' is the group name.

Obviously if your son needs a full liver then the only way he's going to get that is via the national list and probably via what they call the variant list which is those folks who are disadvantaged by the algorithm in the current allocation system.

My hubby was 'O' (+/- doesnt' play a role) and waited 5 months for his transplant and even though his bloods results didn't reveal the true depth of his ill health his t/p team pushed to get him his transplant in the nick of time.

Have they explored whether a TIPSS procedure might help your son or give him some longevity? - reducing portal hypertension and risk of further variceal bleeds whilst he waits.

I wish him and yourselves the very best of luck and fingers crossed he gets his chance sooner rather than later.

Katie

[Laurajade1989 in reply to AyrshireK]

Thank you so much for getting back to me Katie

He had a miso Rex shunt 4 years ago but it unfortunately stopped working 18 months ago and he’s been having regular bandings since then but has also had some horrific bleeds (he lost 2.5 litres of blood in October)

I had no idea about the variant list! I’ll ask my sons liver transplant Co ordinator if he’s on it as he’s defiantly disadvantaged by the current allocation system

Thank you for the Facebook suggestion, I’ll have a look and ask my question on there

I’m really glad your husband didn’t have to wait too long for his transplant (5 months) we’ve been told anything from 5 months to 5 years so it’s a mind boggle

Thanks again for replying

[BritishLiverTrust1 Partner British Liver Trust in reply to Laurajade1989]

Hi Laurajade1989

Last year the British Liver Trust and Children's Liver Disease Foundation merged. Here is a link to the support information for families and young people which you may find helpful:

childliverdisease.org/liver...

Best wishes

British Liver Trust

[Laurajade1989 in reply to BritishLiverTrust1]

Thank you for very much

I will check out the list

[Petrina_gmfc]

Hi so sorry to hear that about your son is have not had a liver transplant i just have cirrhosis of the liver through medication there group s on the British Liver Trust that there can help you ..I was in one of the groups and there was a lady who was her sons live donder I can't remember what one it was .

[Laurajade1989 in reply to Petrina_gmfc]

Thank you so much for your message

I will defiantly check out the website

[DaveQ67]

Hi, sorry I cannot offer any knowledge or advice but just wanted to say, I sincerely wish and hope your son has a speedy solution and recovery.

I can only imagine how difficult this must be. I do hope he is treated as a priority.

Sending love and prayers

[Laurajade1989 in reply to DaveQ67]

Thank you so much

Honestly thoughts and prayers mean the world to us at this time

Thank you for taking the time to message

[Petrina_gmfc in reply to Laurajade1989]

Hi i can find out the group that you can go and join it .