Son has been told he might be on trans... - British Liver Trust

British Liver Trust

27,481 members13,876 posts

Son has been told he might be on transplant list

Westonian profile image

Hi everyone I’m new. My son has decompensated cirrhosis and has been told he will possibly have a transplant.

His treatment has not been good. I feel he’s not had any explanation. He’s in poor health and I worry he will be too ill anyway.

He gets a lot of pain and his ascites makes him look 9 months pregnant.

I don’t feel there’s any support for him. I constantly worry.

11 Replies

Hello love, you have come to the right place for support. People feeling they don't, have enough information seems to be a common theme hence they fetch up here. you haven,t. mentioned what is the cause of your sons liver failure, his age etc , the more information you can share will help the folk with relevant knowledge when they come online. We are here for you .

Hi

I'm sorry your son is feeling rotten at the moment, it must be so hard for you.

Could you get in touch with pals, I think it stands for patient liason service, they might be able to help you.

I'm someone will come along with more information than me. Thinking of you both. Love and hugs Lynne xxxx

Thehermit profile image
Thehermit in reply to

Great thinking Lynne, PALS. patient advice liaison service can usually be found in the Hospital concerned they would help.

Hi west

Welcome to this forum.

I’m amazed that you aren’t getting adequately treated and feel you have insufficient information. ☹️. My experience is that we were inundated with information- too much in fact when everything is a bit of a blur for you at that time. Was for me anyway ☹️.

I think that it is very unusual that you are experiencing this. . Which Hospital are you at? - is it a specialist Liver Transplant Hospital like QEHB or Kings or similar - there are only a limited number of Hospitals that deal with liver transplants. Have you seen a Hepatology Consultant yet?

I hope you seek some answers out soon and indeed get the answers you need. If he does get sent for a Transplant Assessment rest assured that you will get more than enough information!

Good luck

Miles

Your son will need to have an assessment before going on to the list to check if he is fit enough to go through the lengthy operation & can cope with the after effects during recovery

The assessment is like a full body MOT where they look at lung function, bone density, counselling session, education session amongst other things. Only after the assessment & meeting the criteria will the liver team decide if he goes on the list or not.

Trust5 profile image
Trust5Administrator

Good morning,

I am sorry to hear about your son's condition. We do have information on our website about cirrhosis, liver transplantation and plenty more. The booklets can be accessed via our website or sent to you.

britishlivertrust.org.uk/in...

I wonder whether it may be helpful for you to speak to our liver nurse on the free helpline:- she can find out exactly what information would be useful to you and your son and also clarify how to take things forward.

The helpline is open from 10:00 to 14:45 Monday to Friday. 0800 652 7330

regards

My guess is that you're not in a specialist hospital, by that I mean one where they perform liver transplants.

I had a similar experience at my local hospital until I was referred to Kings. If they've suggested transplant then my advise would be to push for them to refer you to a specialist hospital as soon as possible. The consultant at my local hospital thought I was past it and told me nothing could be done. I went back with my family the next day and demanded a referral to Kings. They transferred me and things were dramatically different.

I was given all the information and explained the process, then a week of testing I was fit for transplant. Once on the list all potential transplantees were invited to an information lecture and given an information pack and a phone number for the transplant nurses.

I'm now 4 years post transplant and lead a pretty normal life.

Thehermit profile image
Thehermit in reply to RodeoJoe

Wow, what a powerful story. So if you and your family had not fought for you and demanded a referral ... Gosh we can all learn from that Joe. I hope the first consultant was pulled over dismissing you like that, though it,s doubtful. I shudder to think how many other folk he acted as Judge and Jury over and concluded they didn't deserve a shot at a second chance. That is both terrible and terrifying .Well done on your remarkable journey Joe , best wishes.

RodeoJoe profile image
RodeoJoe in reply to Thehermit

I know! I was in hospital whilst my other half was looking up transplant centre's.

It is terrifying as at the time i was completely vulnerable, exhausted and not thinking straight. It if wasn't for my gf I'd probably not be here today.

Lesson learnt was to never take professional advice as the only option. Hope it all works out for your son and make sure you push for a transfer to a transplant hospital.

Westonian - You may find that you'll be much better informed if your son is willing to sign a statement to the effect that he wants you to be copied into all the facts of his case that are known to his healthcare providers. If this is not in writing, the hospital has a duty of confidentiality to your son which at times can get in the way of communicating information in the way that may best meet his needs. Whatever happens, there are many people here that can walk through this difficult time with you. You did a good thing with your post, so stay in touch with how things go.

Hi Westonian,

I completely agree with the advice that you both need to go to a liver transplant specialist hospital. 9 months pregnant with ascites is par for the course and can be helped with drains or meds.

Good luck

Sophie

You may also like...