Liver transplant on list wait time

[Whitelock]

Hi my husband on the list. He has been called twice but both times after 8 hours told not the liver not healthy enough. What is the average times you are called.

[Poobear69]

I really don't think there is an average wait time? I was listed on a Friday afternoon and was called in the early hours of the following Wednesday. It was my first call in, exact match and a healthy liver. I suppose I was very lucky. I do sincerely hope that it will be third time luck fot you both.

[Whitelock in reply to Poobear69]

Thank you fingers crossed

[Kristian]

You can check the stats for all units by clicking on the following link:

nhsbtdbe.blob.core.windows....

To save you a bit of searching, average wait times are set out at the bottom of Table 3.3 on page 27.

Clearly, anybody's own wait time can be very variable. Mine was 6 weeks. I think there is another table somewhere where you can get info on wait time broken down by blood type. That would be a reasonably good guide as that is what has a big influence on availability.

[Whitelock in reply to Kristian]

Thank you

[Poobear69 in reply to Kristian]

That's really useful information Kristian, thanks for sharing.

[Identity75]

The fact that he has been called means he is either at the top of the list or very near. In my own humble opinion I’d guess that it’ll happen very soon, they are just waiting on a healthy liver suitable for him. The odd “dress rehearsal” is relatively normal. Don’t worry. It’ll happen.

Good luck.

[Whitelock in reply to Identity75]

Thank you I am sure it will

[Wass71 in reply to Identity75]

Hi Identity, haven't seen you on here for a while. How has all your treatment gone, is it finished? I hope it has been effective. Has your book been well received? Did you get a publisher or did you self publish? Such an achievement to have completed a book, even more so with health issues.

Hope you are well.

Take care

Wass

[Identity75 in reply to Wass71]

Hey Wass,

I’m still floating about and pop my head up every now and then if I think I can help.

Chemo is all done and thankfully I’m in remission, long may it continue.

I self published When Evil Calls, available through Amazon and Apple, and overall it appears to have been received well. I’ve got some complimentary reviews on Amazon. It’s not everyone’s cup of tea, I’m very frank and don’t shy away from the reality of how people really speak. In other words there is swearing. But what is in the book is the life I’ve lived so I know how it really is.

I hope you are well, or at least as well as you can be.

All the best

Identity

[DENRO]

Hello Whitelock. I was diagnosed with Liver Cancer in June 2016 but was not put on the TP list until end of July. Over a five week period I was called into the QE Birmingham THREE times. Each call was received during the early hours. I travelled to QE and prepared for theatre with all the tests and pipes and tubes fitted. After a few hours I too was informed each of the Donor's Liver was not suitable. I was finally called in on 5th October, only a few weeks later. I arrived and prepared at 2pm but I did not get wheeled into theatre until 2.10am on the 6th. The sad part is that I found out the Donor was only 21 years old, but will be forever grateful to him/her and the amazing Liver Team at the QE. Do not despair, when a Donor Liver is made available your husbands turn will come and he will receive a new lease of life.

[Whitelock]

Amazing fingers crossed he will not have to wait much longer. Cambridge seems to have a good success rate

[Wass71]

Hi, I've been on the list since 26th April, to my utter shock I got a call on the 1st July. However the liver was deemed to be unsuitable. I am B +ve, so was told could wait 18 months to 3 years. I just had a hepatology appt today and the consultant was saying the new organ transplant list system means no one feels able to predict how long people will wait. Now they have a transplant benefit score and a donor score which matches the suitable organs to recipients. The algorithm is complicated and not easy to predict, they may need to review it if they find certain conditions are waiting longer??

However as some have said, the fact he has had a couple of calls means he is coming out as high up on the list. I'm trying to think what will be will be, I can't change or affect the speed, so my stressing won't make any difference (although I may not feel like that if I'm still waiting this time next year??)

Good luck, I hope it happens soon and all will be well and successful.

Best wishes

XWassX

[Adelou]

Hubby was on the list 4 days & we had an hour to get to the hospital & an hour with us arriving he was in theatre having a transplant as it wasn't suitable for the intended recipient but was a perfect match for my hubby. We thought it would be a long wait as they had just changed to a national list 3 weeks before he was listed. It will happen & as said previously he must be near the top as he has been called twice.

[Whitelock]

Thank you he feeling very down today as his health is getting worse. Try to make him laugh and stay positive. As I believe laughter is a medicine. He has low blood cells at the min which they are not sure why

[alfredthegreat in reply to Whitelock]

Hi. Nothing that I can add but just I wanted to say that I hope the call comes very soon for your hubby.Thinking of you both, Very best wishes. Alf

[Oldred]

I don't think average times will help. I was on the list for 13 months and had my transplant on the 5th time. We heard about a lady who was called 26 times!!! Just be reassured that you ARE being thought about and that you will only get a 'good' liver.

[X19Dave]

Hi my wife was called 4 times one time she was called on her way home from the hospital after another call

There is no definate amount of calls it will take but I do feel that you get a couple of calls for want of a better term that are not real I think it is the hospital seeing how long it takes you and also for you to get used to being called.

It will happen just kick back relax which I know is not easy and let things run their course there is nothing anyone can do to make it happen quicker.

Also it is good that the hospital want to put in a good liver

My wife had some problems with her transplant first liver failed due to it taking too long to get her old one out 5day intensive care then a second transplant but she is all okay now as you husband will be after his

[AyrshireK in reply to X19Dave]

They don't send for you just for the sake of it to test your response times, that would be totally unfair and too stressful for all concerned.

Many people actually do 'strike it lucky' and their first call is the one.

There is always a potential donor liver available when you get the call, it just depends on what is actually found once the retrieval team obtain the liver or what state it is in when it arrives at the t/p unit.

The most calls i've ever heard of on here was a chap some years ago who sadly had 13 calls before his t/p as he absolutely required a full and large liver and the donor ones just never came up to scratch. Then we have the story of one of our current members who was actually knocked out under GA, prepped and ready for surgery only to wake up to find his donor liver had to go elsewhere & he hadn't had surgery as someone of higher priority needed it.

When someone has started getting calls it means they are becoming of higher need and hopefully the correct liver will show up soon and successful t/p occur.

Katie