TRANSPLANT

[lonmallin50]

Is it right the waiting time for a transplant is 65 days for a adult l read on the nhs web site, l going to first meeting on thursday at QE hospital is there any one out there on the list and how long you been waiting thanks lon

[AyrshireK]

The NHS website says the average wait time for an adult is 65 days. Some folks are urgent and might get theirs quickly whereas others wait way longer - many months and even into 2 or 3 years.

There are a great many factors involved in matching recipients to just the right donor liver and it will all be explained at your assessment.

Blood type, body size, type of liver available (brain deceased, cardiac deceased, split) and which kind they say you need.

Then it's based on clinical need or urgency - who (on whole of Britain waiting list)- most closely matches available liver and is in the most urgent need of transplant at that time.

We've had forum members in the past who actually got the call as they were driving home from assessment and got their t/p that quick. Others have waited months, even years plus dealt with the emotional roller coaster of getting called in and prepped only for the op not to happen. (liver not good enough when retrieved etc.)

It's a very stress filled time which you need to be prepared for.

* My hubby was listed for 10 months then delisted because he improved and no longer met criteria for t/p *

Hope all goes smoothly for you.

Katie

[lonmallin50 in reply to AyrshireK]

thank you for your reply

[Ubwa]

3 weeks for me from acceptance to transplant for me. As above it depends on many factors.

[Ewife]

Your numbers will be plugged into a big central computer (held in Bristol I believe) and along with everyone else in the UK this decides when your number is up. You will go up and down the list (unbeknown to you) depending on a lot of factors, including other people on that list deemed more urgent than you. That obviously changes on a daily basis.The only thing I can describe it similar to is when you have a baby overdue - but on a much bigger scale. It's a life changing event, and you have to adjust to living 'ready' to walk out the door at not much notice!!

I wish you all the very best

Ewife

[Hidden]

I was top of the list at one stage, I went for a t/p, but after 18 hours the liver was deemed non viable, somehow that dropped me down the list?

Katie is referring to during your assessment you can choose whether you get a liver from someone who had a history of cancer, had hep, which was cured, whether you are willing to accept a liver from someone that was infected, treated with the liverr perfusion machine etc.

I opted to restrict the demand because I didn't want a liver that would leave me with a short lifespan before needing another replacement, you discuss all this with your transplant co-ordinator, consultants t/p team etc.

Also in August each year they change the registars, consultants and the people who push for your t/p change, so the new team may not feel you need one as urgently as the previous team.

I found that I dropped from top to middle to obscurity on the list as many patients in more desperate need were moved up the list in priority and I was moved down.

I looked at my first t/p operation as a dry run, learned all the things I needed to get sorted in my life, things like will, how I would be buried or cremated, what to get rid of, bringing a blanket with me, preparing a ready bag etc. so I am ready for a t/p operation.

I had a nice chat with my consultant about where I was on the list and why I had dropped, he showed me the national graph and explained how the more we deteriorate the greater the chance of getting a t/p are. (go figure, I have to get more sick to be bumped up the list)

I echo some of the posts I have seen, consultants being too positive and trying to get information often feels like trying to get blood out of a stone.

But eventually I got a life expectancy table showing I still have 1.5 years before I die, so plenty of time before I need a transplant, ofc, that is an estimate and does not take into account my deteriorating condition, constant drains, changes in physiology and blood tests etc. all of these impact on your t/p.

I have also been told there is currently a shortage of livers, so this has created greater demand and slow down for t/p.

One of the things that came out as a positive for me from my first t/p being unsuccessful was dealing with my life expectancy, learning to accept my mortality, faith etc. so that whether I get a t/p or not I have accepted my circumstances 😇

[Janty701]

I waited 23 months for my transplant. I had four false alarms after18 months then I heard nothing for another 5 months.

[Flowergirl24]

Hi. I passed my assessment Oct 2019. Then Covid came along and lockdown. After 1 false call I had my transplant 13 days later May 2020 at the QE. You’re in good hands with them. Good luck.

[Refs]

Hi lonmallin50

[Rshc]

I have recently heard of people waiting 4+ years. I wonder if these are people on the variant list. You really could be waiting hours or years depending on a whole host of factors

[AyrshireK]

In 2018 when the new nation wide system for allocation of livers went live the BLT released the following detailed statement :-

New system for allocating livers for transplant is now live

Posted on: 5th April 2018

The new National Liver Offering Scheme has now been introduced by NHS Blood and Transplant (NHSBT). This is the new system for liver transplant allocation and distribution.

The new offering scheme is a way of matching livers from deceased donors to patients on the liver transplant waiting list. The new scheme will match livers on a national basis rather than the regional basis in place at present and is expected to increase the number of life-years gained from transplanted livers and decrease the number of people who die on the waiting list.

The scheme also introduces a more objective way of matching organs to patients. Working with the Liver Advisory Group which includes representation from the British Liver Trust, NHSBT have developed a computing algorithm that uses both organ donor characteristics, and liver patient recipient characteristics, to match the donated liver to the recipient. In this way, the liver is allocated to the recipient who will receive the most benefit from a transplant from that particular donated liver.

This new scheme is expected to ensure that the right liver goes into the right recipient in a timely manner; increasing the number of patients’ lives that we’re able to save and improve. This new scheme uses a new scoring system called the Transplant Benefit Score (TBS).

How the new Transplant Benefit Score works

Priority will always be given to those patients on the ‘super urgent’ list (This list is for very sick patients who will not survive for long without a liver transplant). The super urgent list also includes patients with Hepatoblastoma and those waiting for a multi organ transplant.

If there is no patient on the super urgent list, or there is not a match, the available liver is then offered to patients on the Liver Transplant List with the highest Transplant Benefit Score (TBS). The highest ranked patient with the best match will be the first to be offered the liver. The final decision to accept the organ still lies with the patients transplant surgeon.

Livers that are proving more difficult to allocate will be offered broadly to make sure that the most number of lives are saved with the donor livers that are available.

How is a patients TBS Score worked out?

Before the new scheme was introduced patients with a liver disease were assessed on their need for a liver transplant based on their UKELD1 score (United Kingdom Model for End Stage Liver Disease). Clinicians calculated this score by looking at 4 different patient characteristics from the liver patient.

The new scheme is designed to be more in depth and takes into account 7 characteristics from the donor2; these donor characteristics are then ‘matched’ with 21 patient characteristics3. The patient with the best match will be shown at the top of the list and will have the highest Transplant Benefit Score (TBS).

The TBS predicts which patient will benefit the most from the transplanted liver – who will live the longest with the transplant, but also who can survive the longest on the list without receiving a transplant and is, therefore, able to safely wait a while longer before being offered a liver transplant. The scheme also includes

The TBS predicts which patient will benefit the most from the transplanted liver – who will live the longest with the transplant, but also who can survive the longest on the list without receiving a transplant and is, therefore, able to safely wait a while longer before being offered a liver transplant.

A small number of patients on the transplant wait list will not be suitable for assessment using the TBS and these patients will be allocated a proportion of organs equivalent to the number on the list (Proportional Allocation Pool). The Liver Transplant Patient Consortium has been consulted regularly in the last 5 years as the scheme has been developed.

An independent group has also been appointed to monitor the performance of the scheme and rapidly assess progress and any issues that may arise. Two patient representatives sit on this panel.

The change to the new scheme will be seamless for patients; transplant centres have already supplied the information needed to work out TBS for any liver being offered for transplantation. Centres will update patient information any time there is a change in circumstances, but must also do so every three months. Therefore, it is very important that patients attend clinics on a regular basis so that data is current and accurately reflects the patient’s condition. Waiting time accrued on the current list will be carried over into the new scheme.

If any patients on the waiting list have any further questions, they should contact their Recipient Transplant Co-Ordinator.

Notes:

UKELD a scoring system used to predict prognosis for patients with a liver disease, it takes into account INR, (international normalised ratio), Serum Creatinine, Serum Bilirubin and Serum Sodium.

Donor characteristics include age, cause of death, BMI, diabetes, donor type, blood group and split liver criteria

Patient characteristics include age, gender, Hepatitis C, disease group, creatinine, bilirubin, INR, Sodium, Potassium, Albumin, renal support, inpatient status, previous abdominal surgery, encephalopathy, ascites, time on waiting list, diabetes, maximum AFP level, maximum tumour size, two tumours, three or more tumours those patients with variant syndrome disease - this group of patients will now have a better prospect of receiving a transplant match.

[Bikafella]

I had to wait 6 months for my new liver but met a few who received "the call" within 3 weeks. I also met someone who had been waiting 3 yrs due to their poor general condition.