Hi, I'm new here and looking to tap into others experience/ knowledge...
My partner has portal hypertension and decompensated cirrhosis and has scored Childs C. Our consultant has requested he be considered for transplant at Kings. Does anyone know/ have experience of what kind of waiting time frame we are looking at for a transplant assessment? Every day feels like a year right now, so we are just wondering if its likely to be a long wait so we can manage our expectations a little? Any help much appreciated.
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Luna84
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Hi Luna, can't help with Kings experiences but we do have other Kings patients on here. Sadly with this condition there is a lot of waiting, always seem to be waiting for an appointment, results and tests and obviously if listed you'll be waiting for that new liver. Hubby and I are nine years into our liver journey and you do always see to be waiting for something.
Has your partner been referred to Kings? Make sure the referral is actually done, my hubby waited an age for his referral to Edinburgh and it turned out it hadn't actually been done. Sometimes you need to be the squeaky wheel and chase these things.
I don't know what the current wait time is for Kings assessment (Covid-19 has affected waiting times so how long you'll wait to get to Kings no one can probably say). I don't know how the assessment is done there (there are definitely others who have been through the Kings process who will hopefully jump in and advise). Some centre's do some of the tests locally and call them in, others do it all in house, sometimes as day patients others as a block in an inpatient stay (Edinburgh is 4 or 5 days inpatient).
Tests for transplant involve pretty indepth physical and mental stuff - making sure the patient is actually in need of transplant and there all other possibilities have been explored and then to make sure the patient is actually fit enough to go through the procedure and have no other conditions that might hinder recoverability i.e. any other illnesses, healthy enough heart, lungs etc. and also mental wellness. Lots of chats and discussions as well as the physical assessment.
Once all are done the multi-disciplinary team sit in a meeting and weigh up all the pro's and con's and hopefully the decision to list comes (if appropriate).
You then really begin the wait, the transplant list is now nationwide and allocation is based on the most needy first (livers are matched based on blood typing and body size and the type of donated organ - you'll find all this out at assessment). So when a donor organ is becoming available the national coordinators search their list for the person who most closely matches the organ and who is the most urgently in need. Waiting time for the actual op can range from hours to days to months to years even & sadly can also involve many calls that don't result in an operation. The surgeon doesn't know whether the t/p is going ahead until he/she physically has that organ in front of them so a patient may be all prepped for surgery but it may not happen that time and it can be quite traumatic so mentally need to be prepared for such things.
My hubby and I spent 10 months on the waiting list for t/p but in that time his condition stabilized to a level where he no longer met the criteria for listing and he was put back to the watch and wait stage (that was now 6 years ago).
Thanks so much for your reply Katie. Its been a lot, and we are only at the beginning of our journey so your knowledge and experience is a huge help. Thanks again xx
I was recommended to Kings in late July 2012, and assessment was arranged for mid October. Not sure what the time frame is now, what with all the Covid shenanigans messing with hospital appointment schedules. Good luck.
My hubby had decompensated liver and was admitted to hospital on 3rd April... his portal hypertension was horrific he had also developed a clot in it. His stomach and legs had ascites so bad he couldn’t even stand .... he ended up on a feeding tube because although swollen he actually lost over 3 stone.
And because of Hepatic Encephalopathy he thought he was eating when he wasn’t, he had to have protein shots drinks etc.
He was in hospital, but too ill for a transplant after he was on feeding tube he got a little better and was transferred from local hospital to QE ON 5th June he was in for a week while they did all the tests in one go..... came home on 14th June ( he actually came home 1st time since 3rd April had to have treatment and bloods done 3 weekly but really needed after last few months) after multidisciplinary meeting we were told he was going on list but had to have further checks on his portal vein and where the clot was .... they rang on 19th to say it was all going ahead and on 29th he was listed as super urgent we got the call a week later 4th July at 2.30am drove to hospital and was admitted at 4am, he had transplant on 5th July at 4.30am and it took 5.30 hours came home 2 weeks later .... but everyone’s journey is unique to them and different, so please be patient and also take time to stop take a breath and have faith in the wonderful liver units where transplants happen they really do know best ..... good luck( sorry long winded shortest I could get it lol) xx
Wow what a journey you have both had. So glad he got the transplant and hope he is feeling ok now. Thanks so much so replying its good to hear from others. x
Hi Luna84 - you have already received lots of valuable support from our members but I'll attach a link to our support groups which you may find useful and also a link to general information regarding transplant.
Hello Luna, I'm sorry for the delay in responding to your thread, I was trying to find the following page links.
As you'll appreciate, many of the seven liver transplant centres in the UK, all operate under the same strict code of practice. To this end, they may well each produce their own set of guides and information booklets, but the principle is the same.
This first link is to a publication produced by the Queen Elizabeth Hospital, Birmingham, and basically explains how the liver transplant assessment is carried out, and what to expect: liversupportgroup.infopage....
The second link I’ve included is a link to a publication entitled “Alcohol and the Liver A workbook on Alcohol-Related Liver Disease and Liver Transplantation”. This workbook is a lot more in-depth and asks a series of questions and exercises. Although some of the questions might be different at King's, it will at least hopefully give you an idea of what is to come: flipbooks.leedsth.nhs.uk/LN...
None of these questions are trick questions. The team merely have to be convinced that if a liver was to be offered, then it will be looked after.
Dear LunaI am the worst person to ask. My partner died at the hands of the NHS ( euthanasia by starvation) last year 11th May 3:10 am. I understand what you going through the trust refused a 2nd opinion despite St. James's Leeds only being 8 miles away. I was prepared to do a living donor transplant as I can give to all but not take ( rare blood ).
May I suggest that you actively contact the hospital and press them.to give a time table.
The knowledge of stress is sicking and I feel for you both.
Thank you for your kind words I hope and pray for both of you that all goes well. 5 years ago I volunteered for a friend of mine from Ilkley to be a living donor at St. James's Leeds they had not done it before; I was amend that they compare my possibility his wife took that challenge up per Facebook and in the end 3,000 offered as living donors. St. James's had never before considered such, but Switzerland has been doing it for years now.And as I can give to all but not receive it is my duty as a "Mensch" to help where possible.
My friend 5 years later is healthy and well ( during pandemic he stayed safe ) but his GP had written him off.
It is the constant pressure on your GP, hospital and specialists that will help you, get all assessment done out of way and push softly.
I had an assessment at our local liver unit and then the final one at King’s. For me I waited about 2 weeks for my local assessment and then about 4 weeks for the final assessments at King’s! To meet the team up there. I was listed for transplant the following week! This was pre-Covid, but I know people in my area who are being assessed both locally and at King’s and some people who have had transplants during Covid🙏💜.
Hey, I waited a week for the dates to come through from them telling me about the assessments. 8 weeks wait for the appointment
Hello Luna84
I am 2 years post Transplant and I had it at Kings. I was assessed and was placed on the transplant list right away. I waited for 9 months before I was called to receive my new Liver. I had 2 false alarms then 3rd time lucky my new liver was available and I headed to Kings and they and my wonderful donor saved my life. During the time I spent on the transplant list my condition was constantly monitored in a series of liver clinic visits with my consultants. I was told there are a number of factors that are considered that really does determine how long you stay on the list. How ill you are is a big one in terms of your capacity to wait a little longer than others who might be less healthy. Waiting for the right liver is another so to reduce the chance of rejection.
The Surgeons, Doctors, Nurses, support staff and all involved with my treatment at Kings were amazing. I can’t give them enough thanks and will be forever grateful to them for the absolutely phenomenal way in which they took care of me and saved my life. If your husband is going to Kings then he is in really good hands. I wish you both the very best of luck. Prayers assured.
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