How long have you been on the list? - British Liver Trust

British Liver Trust

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How long have you been on the list?

baby2016
baby2016

Hi All,

My hubby has now been on the transplant list at Birmingham QE for 145 days. I have read the average wait is 135 and just wondered how long others had been on it who are either still waiting or have had their transplant. This wait seems to be taking forever and each day that goes last I know is another day nearer which is making me feel more and more anxious 😬

26 Replies

I don’t want to scare or add to any anxiety. I waited 18 months on the list before I got that fateful call. This was (I am told) because I had previously had a liver resection, and there is only one way in, so they needed to use the same scar line and this was going to take longer to “open me up”.

I have written a blog about my journey through diagnosis, time on the list, and beyond which you may find interesting. 1liver1life.wordpress.com it is my story to date and has a bit of everything. Sadness, Joy, Horror, laughter, tears but I’m sure you will identify with some of the feelings.

Ray

On the other hand my son waited 18 days yet another young man who’s mother I chat to is on 11 months now. There really is no way of guessing.

My hubby only waited 9 weeks.turned out to be lucky as they found many undiagnosed tumours on explant.had he waited longer they may have been discovered. This would have excluded him from TP.he would have died.

Been nearly 7 years now.

No recurrance. Makes me wonder about giving treatment for tumours rather than remove the whole lot.

Good luck

Hi baby

Waiting for the call is hard there’s no getting away from it always checking your phone,have I got charge,have I got signal it goes on and on but what I will tell you is it will come and probably in the early hours,try not to let the waiting stop you doing things you would otherwise do don’t put your life on hold as when the call comes simply say how far away you are as long as your within 3-4 hours away it’s fine if you fancy a little break tell your coordinators and they will advise we in fact booked a weekend away about 5 hours away from addenbrookes after waiting for 14 months (with their permission)and had first call 2 days before going lol but it wasn’t to be then waited another 3 months before 2nd call and was lucky enough to have my gift.

There are many people on here how have waited longer than the 135 days dr Google says is average any many who have waited only weeks but a lot depends on your wait like how badly is transplant needed as there is a super urgent list that comes first and of course getting the best possible match please be strong the call will come.

Am now 12 weeks today post TX and feeling really good you will both be in fantastic hands from the coordinators to the doctors and the nurses they all know there stuff

If you have any questions please feel free to ask we wish you the very best of luck on your journey and that call

Huw

My partner has been on the list for 619 days so far. He's Oneg and was quite stable for a while. He's now deteriorating pretty fast so hopefully we get the call soon.

Stay healthy, keep your phone charged. Nothing else you can do. The list is an awful place to be.

Hidden
Hidden

Transplants depend on genetics and ethnicity of both donor and recipient. It isnt like ordering baked beans. It is extremely complex. Ethnic groups have to wait longer as do rare blood groups through lack of supply. Location is irrelevant as you are on the European list not just Birmingham. Organs go anywhere. Antibodies also need to be matched as close as possible to try and improve chances of success. Liver patients also wait longer as there is only one per donor unlike kidneys. Health also matters as you must be likely to survive the operation as well. Infections and other illness will prevent operations so more than two people get the call and the lucky recipient is narrowed down by the preop blood tests. The other is sent home. The shortest ever wait for a kidney is an hour, the average is three years. Livers longer. Your doctor will tell you the current liver wait. It is not just a case of serving a fixed wait you see.

Good luck.

Divg
Divg in reply to Hidden

Rare blood groups don't necessarily wait longer. The longest wait is actually for O, which is the most common blood group in the UK (their average wait is nearly double the others).

Transplants are also not Europe wide, they weren't even UK wide (outside of super urgent) until very recently. I know you're only trying to be helpful but spreading misinformation on a public forum will cause confusion for other people.

As a side note - the back up patient thing is very uncommon. It does happen, but it's not routine. And the liver list is actually shorter than the kidney list because the kidneys can be mechanically recreated (dialysis), if you don't get a liver tx, you will die. 1 in 5 people on the list do.

AyrshireK
AyrshireK in reply to Divg

Totally agree with you there DIVG - Correct about wait times for O livers (generally longest list / longest wait) and rarer blood groups - yep less donors for these types but also shorter waiting lists - often results in fairly quick calls.

Also, ethnic match not essential either in liver transplant purely blood group and body size match. Not tissue typed like other organs - not antibody typed or anything like that.

New allocation system came in earlier this year which is now nationwide - most poorly patient anywhere in the UK who meets the size and blood group of the donor will get the call.

Katie

Hidden
Hidden in reply to Divg

My transplant surgeon told me all transplant lists are held centrally by a specialist nhs team and organs can come from anywhere in europe.

I waited about nine months for mine. It can be a long wait, it’s difficult to put it to the back of your mind, you’ll find so many things in your daily routine that constantly remind you. The best you can do is just carry on living as normal life as possible. The call will come and probably when you least expect it.

Good luck

Dvig

You are absolutely correct to share this information and couldn’t of put it better if I tried 👍

My hubby waited 3 days after being listed.He was really ill by the time he got listed though as he had to be alcohol free for a year.He is o negative but don't know if that helped or not x

Hubby waited 4 days. Wasn't suitable for the original intended recipient, we were lucky in him being a perfect match and the closest. 3 months post transplant today and still in a little bit of disbelief that it happened so quickly, as we thought it would be ages.

Don't give up

Thank you all for your replies 😊 I was under the impression the list was just U.K. and not Europe as well. I know the new procedure came in in March to cover U.K. wise and not just certain areas in the UK, so does this include Europe as well now?

My hubby is O- PHC linked to his Chrons disease and is 35. What makes it harder is we are going through ivf and it’s hard trying to plan all the treatment thinking we could get the call any day, I’m 40 so cannot really delay the treatment. All so stressful really. He had a liver stent 2yrs ago which due to HE put him in a coma, and whilst under has half his bowel removed. I was told to expect the worse but amazingly he pulled through and was released from hospital after 13weeks. I think that whole ordeal emotionally has had a huge impact on me as the recovery period was so long and he did suffer badly and I’m dreading the transplant going down a similar route, especially whilst going through ivf as well. It can be such a lonely place for the person caring as there’s nothing you can do to fix anything and that’s what drives me mad at times. I want it to happen quick but at the same time life is quite good for us both at the min and I’m scared of the aftermath 😬

Divg
Divg in reply to baby2016

Sorry to hear about your husband - that sounds very stressful. Do you have much support? We have a 5 month old who was conceived and born while my partner was on the list, so I know how stressful it all is while waiting on the call.

The list is UK wide, doesn't extend in to the EU as far as I know.

baby2016
baby2016 in reply to Divg

I have some support such as family and close friends. But even then I just don’t think people fully understand all the pressures as we are both quite strong go lucky people so think everyone thinks we are ok. Some days I want to scream at them all! Hope your all doing well now 😊

No experience yet of transplants but just wanted to wish you well. The stress for you must be enormous. I hope you have support and ways to practice self care as that will be important.

baby2016
baby2016 in reply to ENuk

Thank you. I find long dog walks and regular meals out with friends seem to be my coping methods! 👍🏻

My husband is also on the list and been on for 74 day's, He is also under Birmingham I know how you are feeling waiting for that call

I’m on the list and have been so since January. It’s very hard not to stress about things whilst waiting. I was warned I may have a long wait as I have to wait for “perfect liver” due to previously having three transplants when I was younger. I’ve been told the call often comes in the early hours, so this often effects my sleep as I always have one ear listening out for the phone! I’m trying to get on with my life as much as I can by doing craftwork seeing friends and looking after my disabled daughter ( with help) and dog, but your mind does start thinking about getting that call on a daily basis. Hope your husband gets his call soon. Everyday that goes by brings us closer x

Hidden
Hidden

Hi

Im not a transplant stage yet but hope you all get your calls soon . My consultant did say I will need a transplant at some point but not yet, see what he says on Thursday when I see him. Love and hugs Lynne xxxx

My husband waited 3 days after being listed but was really quite ill at this time x

How/where do I place my name to receive liver donation

Brett11
Brett11 in reply to Beefeater

Hi Beefeater,

It’s not that simple lol. Someone will be here soon to tell you how it’s done in the UK.

Cheers,

Brett

I want to place my name on a waiting list. Please tell me best sites to place my name. Beefeater

Caspiana
Caspiana in reply to Beefeater

The only way to be placed on a waiting list for any organ transplant is through a hospital after it has been confirmed through testing that you are indeed in need of a transplant. It's not something you can do independently.

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