Long time on wait list

[Talpa120]

Hoping to hear from people who waited a long time for a liver transplant. Husband has been on the list for 15 months now, and I'm not sure either of us can stand this much longer. He's been called once, about 3 months ago, so at least they haven't forgotten about him, but it's so hard watching him get sicker and sicker. His quality of life is basically gone but that doesn't seem to count for anything as the list is all algorithm-based. Just wondering how we get through this.

[Ewife]

yep! Im in same boat with my husband who was listed Jan 2021. 3 calls later, which didnt work out, they have now deactivated him for a bit.(so hes still on the register but just has an "inactive" label next to his name. He is definately sicker than when he was first registered, but its extremely slow progression. I think they see this as quite stable, and i think they are giving us a break while they wait for his numbers to either get better or worse. I dont really understand what is going on, but trying to enjoy the break. Im terrified of being left in limbo like this though - he is pretty disabled now really and our life is a shadow of what it used to be.

Off the list has been just as unpredictable as on the list - i thought it was the fact we were on constant call that messed with my mind - but its every day, is he yellower? Is he sleepier? Hes not as well today etc.....drives me mad. And i never know when hes going to manage going into work or spend the day in bed so can't plan anything.

One thing i wish we had done was ask for a weekend break. We never dared in case it was fate that it would be a missed opportunity but we did go away for a few days in August and really enjoyed it.

Stay strong and look after yourself

Ewife

Xx

[Talpa120 in reply to Ewife]

Thanks Ewife, it's so hard isn't it! But comforting to hear others' experiences. And yes, absolutely agree with the constant vigilance - is he yellower? Is he in more pain and not telling me? Should we be calling someone or is this just 'normal'......it's exhausting.

[Petrina_gmfc in reply to Talpa120]

do you go on to the British liver group there a nice people who has a transplant and have not you should look into .

[Yellowsydney]

Hi, im admin on' liver transplant support uk' Facebook group there are several people in the group that have been waiting 2,3 + years, your husbands time will come, he's had 1 call so he will get another, doctors are waiting for the perfect liver. Please feel free to join our friendly and knowledgeable facebook group if you want support.

Hilary

[Talpa120 in reply to Yellowsydney]

thanks Hilary 😊 I'm sure in 5 years' time we'll be looking back on all this and seeing just how far we've come....

[Yellowsydney in reply to Talpa120]

I'm now 5 years post transplant and there certainly has been a lot happening in that 5 years. Good luck❤️

[Petrina_gmfc]

hi I am not on the waiting list for a liver transplant my doctor said he is keeping an eye on it .I am in a group with people that has had one and people that is waiting for one I could if you want .

[buckldgl]

I had a transplant 5 years ago. On the list for 12 days! Discharged 8 days later!! Everything went well for a while but 2 years ago i was put back on the list. The problem is cholongitis.

I have been suspended now because of high sugar levels but im exercising and dieting like crazy. Hope to be back on the list soon. But they've told me i must have the op in the next 12 months or they'll remove me permanently. Ive already had my gall bladder and appendix removed. The concern is as i get older my body won't recover from another intervention.

The clock is ticking but i just have to accept it and get on with life.

Good luck

[Rshc]

What is his UKELD may I ask? My partner is about to be listed with a UKELD of 56 but I do wonder if we are in for a very long wait. We need to mentally prepare ourselves for that. I never understand how a person may get one call (assuming that at that moment they are top of the list for that particular liver) and then if it doesn't go ahead you would assume the next call would come soon after as they should in theory still be high up the list.

[AyrshireK in reply to Rshc]

There are just a lot of variations that come into play and even though someone may be top of the list one day they may not be the next - priority always goes to the person who is the most poorly and that may be someone who is only added to the list that day or indeed has never been listed but presents as super urgent due to acute liver failure.

Loads of factors can impact on wait time.

Blood type match, body size match, is the patient suitable for a split liver? (i.e. the very best donor livers get split with one part going to a child recipient, the other part to an adult recipient), can they take a cardiac deceased organ or do they need the very best from a brain deceased donation. To increase the donor pool they are also offering transplants that used to be deemed sub-standard perhaps a donor with pre-existing conditions such as some early fatty liver, Hep C etc.

Over the years we've had all sorts of stories on here from several year waits, one guy got 13 calls before his t/p went ahead, one member awoke from general anaesthetic having gone down for his op only to find they swiped his new liver at the last minute to go to someone even more poorly. Being on the list isn't easy (we were for 10 months & at the end of that my hubby was delisted) and you do need to prepare for all eventualities and just hope your hubbies turn comes a.s.a.p.

Katie

[Cat-B]

sadly there’s not enough donors for the amount of patients requiring a transplant, then the diner needs to match the patient. It must be awful just waiting. All transplants go on a National register so your local hospital doesn’t have a say in where your husband is on the list, but they can find out for you. I decided when I was first diagnosed that I wasn’t going to have a transplant, it’s not the easy solution that people think. Please ask your Dr for more information. Good luck

[Readlots in reply to Cat-B]

Hi Cat, thank you for sharing your decision, it’s not an easy one. Having seen what both parents went through, I feel the same way. Dad had a liver resection for cancer following an operation for bowel cancer and spent his last months in pain recovering from operations. Mum decided not to go down that route and I supported her decision. There is no easy route with this. We all have difficult decisions to make. Good luck to all waiting on the list and those who have decided not to.

[Hayls48]

I had a split liver tp in 2015 having been listed as urgent 2years prior my ukeld score was high. Had to be suspended from the list for 6 months due to my daughter’s health. Relisted after and told I basically had 6 weeks or it would not be ethical to transplant.

Reassessed and relisted, 4 weeks later I had the call. Fortunately I am 7 yrs post tp and am fine donor liver looks good still.

What I would say is stick with it they know what they’re doing and when the right match comes you’ll get the call. It is extremely hard on loved ones watching each day there’s a deterioration. But in the end it is all worth it. I wish i’d had mine a bit sooner as my recovery post op was slow and difficult. But at about 8 months post op I was feeling amazing, my jaundice was gone the moment I woke up after the operation, my husband couldn’t believe it.

Hang in there it is tough but the end result is worth the wait xx

[Bellarman]

regarding wait times i myself waited 19months and when they called me there was a woman called to kings in front of me that morning but when she arrived it wasn't suitable for the lady,I can understand frustrating it is i myself was at end stage liver disease and suffering chronic Encephalopathy but you need to be strong it will come, hope this makes you feel a wee better