Liver transplant list

[Laurajade1989]

Hello everyone

I’ve recently been told that my son Jamie

who is 15 years old will need a liver transplant due to portal hypertension and varices

There was an official meeting the following week where it was decided he would be having one

However fast forward 7 weeks and his liver Co-ordinator has told me he still isn’t officially listed yet and these things take time

I was just wandering how long it took everyone else to be officially listed

I don’t want to pester the hospital as I am grateful beyond words for how they are saving my son but the waiting to be placed on the list is a huge struggle for me as I know that it’s a long wait once you’re even on it

thanks so much

laura

[AyrshireK]

Has your son actually undergone a formal transplant assessment or has it just been said he will need a t/p at some point?

I am not 100% sure how the paediatric process works. As an adult my hubby had a 4 day assessment and was formally listed at the end of day 4 following the transplant team's multi-disciplinary meeting.

You'll find more information on the protocol for paediatric liver transplant via the Children's Liver Disease foundation (now part of BLT) and they can provide help, support and advice for both you and your son too.

childliverdisease.org/liver....

Best wishes to you both.

Katie

[Laurajade1989 in reply to AyrshireK]

Thanks for getting back to me Katie

There was a formal meeting where it was decided he would be having one

We’ve got some ecgs, ultrasounds, kidney tests and blood tests coming up so I wonder if that’s all part of the official transplant assessment and maybe they’ll list him once it’s all done? The only things is the kidney test isn’t until April so I’m hoping they’ll list him sooner than that

Thank you so so much for the link! I’ll give it a read

Thank you

Laura

[kensimmons in reply to Laurajade1989]

There was a formal meeting where it was decided he would be having one

So you're okay?

Just take it easy 200 deep breaths, maybe 400 and keep praying. I truly wish you the best! The doctors are not stupid they know how to prioritize, please stay calm. Good luck.

[Laurajade1989 in reply to kensimmons]

Thank you for getting back to me

Yes there was a formal meeting where it was decided he was having one but he still isn’t listed 7 weeks later

I was just wandering if anyone on here knows how long amount of time you typically wait till you’re on the list officially

Yeah I definitely need to take some deep breaths, this whole thing has me shaken

[mel16 in reply to AyrshireK]

hi there

Always interested in your Fantastic responses on this group. Was just wondering how your husband is doing now after his transplant

[Aotea2012]

I’m not familiar with the paediatric listing process but know from this forum that the adult one is well supported with advice and support. The transplant coordinator is the best person to speak to. They will not feel pestered and will be well used to anxious parents contacting them. They are trained to support families and may be able to offer some further support through a specialist nurse. It’s completely understandable to be feeling the way you are and they will be all too happy to help.

[Laurajade1989 in reply to Aotea2012]

Thank you for the advice

I’ll ask the transplant coordinator today if there’s a time frame for when he’ll be listed, I think I was worried about sounding impatient but it’s more just the not knowing is making me anxious

Thank you for taking the time to message

[Aotea2012 in reply to Laurajade1989]

I’d explain how you are feeling to them. There may also be other support that they will be aware of that’s available to you to help with the uncertainty that the process inevitably throws up.

[Ewife]

Hello! Sometimes theres other things they want to rule out first - things that could potentially impact the surgery and recovery. This is why the assesment is so thorough. My husband had a wait 2nd time he was listed due to some blood results and them wanting hematology to rule out things first. Rest assured that once listed, his place on it will be acording to urgency of his condition etc. Try to enjoy the time waiting as the operation is not to be sneezed at and the times you enjoy now will get you through the recovery!Take care and best wishes

Ewife

[Laurajade1989 in reply to Ewife]

Thank you so much

Really good advice, I’ll try and enjoy this time before the surgery and I think you’re right that they may be ruling out other things first as he has a lot of appointments coming up for kidney tests and blood tests etc

Thank you

[Ewife]

They don't like surprises during surgery and can't say I blame them!! Hats off to these incredible skilled people.

[Yellowsydney]

Doesn't sound as if he's had the full transplant assessment yet, once he's had the full range of testing to make sure he is fit enough to survive what is one of the hardest operations there is, all the doctors hold a mdt (multi discipline team) meeting to discuss the results and then he will be put forward for transplant, you will have to sign consent forms before he is listed. I'm 7 years post transplant, had my assessment at Addenbrookes, 3 days as an inpatient, told on last day I'd 'passed' had the consent forms in the post day later, listed the day I sent them back.If you use Facebook please feel free to join our friendly and knowledgeable group called' liver transplant support uk ' thousands of people that have been in your situation, we have several parents of teenagers in the group.

All the best

Hilary xx

[Laurajade1989 in reply to Yellowsydney]

Hi Hilary

I’ll definitely have a look at the Facebook group, the more knowledge I have the calmer I seem to be

Kind regards

Laura

[Gus63]

HiLike others they're probably just waiting to x the t' with the further tests. In my case I had a 3 day barrage of test but had to wait 4 months because they found I was type 2 diabetic and needed to keep me in for 10 days to stabilise.

However after they listed me officially, 3 days later I had 1 false alert because proposed 1st liver not transferable but amazingly I got second call 4 days after that and had the TP in July 23. So for me the wait ON the list was only 7 days.

Not sure about young people, I think they may get priority? Might be worth asking or or others here may know but I suspect much may depend on your son's condition also.

One interesting thing that I didn't know before being put on the list, was how important the anesthetist's views are due to the length of our operations.

I really wish you and your son everything good.

Stay strong though this very difficult time. Mine and I'm sure everyone's thoughts are with you.

Gus.

[Laurajade1989 in reply to Gus63]

Thank you so much Gus

I think he gets priority but he’s 15 so he’s on the adult waiting list as he’ll need a bigger liver but definitely something to check with the liver coordinator

Thank you

Laura

[taar]

Hi.

As others have said, I think they will want to view all the test results before listing him. I am a bit bothered by them not doing the kidney tests until April which seems a long way off. I am SURE the transplant co-ordinator, or his specialist/or the secretary would find someone to explain to you why you are in this limbo and help you figure this out. Which specialist hospital is leading on his care?

I was diagnosed with serious liver problems (a gastric bleed in Dec 2018) was listed in June 2021 after ascites, and received my transplant in September 2022.

Good luck to you all, everyone here will be thinking of you.

[Laurajade1989 in reply to taar]

Hi Taar

Hes having his transplant done at kings college hospital but the test for his kidneys is going to be done at great ormond street hospital so I’m going to give them a call and ask to be called if there’s any cancellations or earlier appointments than April

Thank you for the kind wishes

[2022minks]

Just sending you and your son Jamie big love ❤

[Laurajade1989 in reply to 2022minks]

Honestly thank you so much

When horrific things happen like this you realise how many lovely people there are in the world and how much kindness matters , people sending their wishes means the world

[AyrshireK in reply to Laurajade1989]

I know you say he'll go on the adult waiting list owing to size of liver needed I am guessing there is still some element of priority being given. My hubby had a massive variceal bleed with portal hypertension back in April 2012 and lived with his cirrhosis since then (42 varices banded from 2012 - 14) and it wasn't until this year that he was finally listed and transplanted. 'Trust in the system' would be my suggestion it sounds like they want your lad through the process fairly quickly. See if Kings and Great Ormond Street can get together on whatever the kidney tests are so that you can get the formal liver transplant listing process going.

Best wishes, Katie

[Laurajade1989 in reply to AyrshireK]

Thanks so much Katie

My son has gone through something similar to your husband so I feel your pain

He had a varices bleed a few weeks ago and lost 2.5 litres of blood through vomiting which was a shock to us as he hadn’t had a bleed in nearly 2 years and his last endoscopy showed no varices needed banding or injecting and that was only 3 months ago

Up until that point they were hoping the banding and carvedilol would keep it at bay but unfortnately it hasn’t

I’ll def try for an earlier appointment for the kidney assessment and will trust the system until then

Thanks so much for getting back to me