Can anyone advise what the accuracy of the estimated period for a Transplant is i.e. how long more or less an individual had to wait before their procedure was performed.
My surgeon (Iberian gentleman I think) said approximately 8 months, Dr Shah who was the Gastro/Heptologist for the assessment that day said 6 to 9 months.
I appreciate there are many variables that can effect this approximation, so it might make sense that my target audience for this question are those of us who have been listed, spent a sustained period on the list and were then transplanted without any major comment complications however it would be great to get feedback from all in the know.
Many thanks folks,
Tom
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tommyc
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My hubby actually ended up being delisted after a 10 month wait as his condition actually stabilized so he no longer met the criteria for transplant. There were people on the list then who had been waiting 2+ years and we've had members on here who have waited 18+ months.
It all depends on your condition, the most critically poorly will ALWAYS jump to the top of the list for any available liver so the more well you are the longer your wait - it all depends on how good a match for you for any available liver and whether or not you are of higher priority than others who also match.
It also very much depends on which blood type you are - some of the rarer blood types can actually potentially have a shorter wait as there are less folks waiting for that type of liver. Blood type O often has the longest wait as although there are potentially more O donors there are also more O folks waiting plus with blood type O being the universal donor can also be given to folks in other blood types.
We now have the national allocation system so donor organs can come from anywhere in the country and are now allocated from one central pool. When a potential organ donation is known to be coming it is matched by blood type, body size and type of donation (some folks waiting can only have say a full liver from a brain deceased donor, some can accept a split etc.). They match it with the most appropriate waiting patient and get them rolling to hospital - sadly, livers often get found to be substandard and not suitable for transplant and several calls to hospital are not uncommon.
Sadly, we also now have the situation with covid-19 and the demand for ICU beds, it hasn't yet been announced whether hospitals still have the capacity to be carrying out transplant at this time.
How are you actually doing? Hopefully not too badly and still being kept an eye on by your t/p team.
Despite the physical symptoms, my Decompensation is associated with HE, albeit covert, I’m not confused to the point I’m clueless where I am, more subtle but very debilitating all the same in my imo, I’ve had to cease working but I’ve been winging it for a long time, my T1 Diabetes control is all over the shop as I’m forever miscalculating by Insulin Dosage which can be life threatening in itself, Ukelds ranged between 56 and 57 for the last couple of years. I’ve been listed for ‘DBD’ only, I can’t recall my blood type, my brain is saying ‘O’ one minute then ‘A?’ the next.
Just a suggestion and feel free to be critical as you like, would it be beneficial if there was an online graphical report based on historical data from donors and recipients which could give an indication as to where you are on the list. Obviously it couldn’t be relied as a perfect science, but possibly as a guide.
I appreciate theirs lots of variables to account for however I work in IT and forecasting, analytics etc plays a big part of what we do, I think it’s doable but have no idea what this would take, quite probably many factors I’m not taking into account.
Just to emphasise, this is not a critique and I’m not having a moan, I appreciate how lucky I am to be listed, it’s just a loose suggestion, probably driven by frustration in these isolating times.
Anyway, keep well folks, see you on the other side, fingers crossed!
There is indeed such a report. NHS blood & Transplant publish it. It hi e all info on how many of each transplant at each centre. Also includes in their average wait times broken down in to blood group too if I remember rightly.
Do a search on the internet and the report comes up near the top of the list. It does take a bit of a read through the report to find the right bit though but it is in there.
The problem with trying to be analytical about it is 'the list' is fluid. It's not a list where you work your way up it, it is purely down to clinical need - a person might technically be at the top of the list indeed we have a member on here who got the call, spent the night being prepared for transplant and actually got the general anaesthetic with all systems go for transplant only to wake in ICU feeling groggy but in no pain - why? Because even though he was on the table, some one else, somewhere else actually presented as an emergency and they got the liver.
There is data on line as to how many organ retrievals are done, there are hospital by hospital statistics on operations carried out etc. etc.
I am not really into statistics, my hubby was delisted because he no longer met the criteria - the risk of transplant outweighed potential benefits at that time and he would have been waiting on a transplant list with all the restrictions that brought with a call never going to come.
We just hope that if he deteriorates again he'll get his chance. He is certainly not symptom free, he lives a somewhat restricted half life but whilst he has some function and isn't ultra symptomatic then t/p isn't right for him just now.
When does the new rule that everyone is a potential donor unless they opt out come into force? Do the transplant teams think that will make a significant difference? I do hope so but I fear hiccups(!) like the one we are going through now might scupper the best laid plans.
Like Katie I wouldn’t go on statistics....I believe I am type O and I remember the surgeon at the Assessment telling me that because I had a common blood type I could have a very long wait - the implication being year(s)? However it turned out I must have been pretty high up the List - they don’t tell you where you are as you will know - and I got my first call after only 6 weeks. Thought I was a lucky so and so but the op got cancelled just before I went to theatre because the donor liver was too fatty. But then, lo and behold, less than two weeks later I got my second call which was 👍.
So it really does depend on many factors but how ill you are must be pretty darned high up that list!
Hi i didnt realise how bad my liver was until they mentioned I wud need a transplant sooner rather than later and I had a rare blood group as well. I had prepared myself 4 a long wait but was only listed a few hrs when I got the call and luckily it was a match and op went ahead . On the 16th March it will have been 12 months wow how fast that has gone. Hopefully you won't have a long wait and like others said there are factors that are taken into consideration as 2 length of time and need and getting donor livers. Good luck and hope you get sorted soon in the meantime stay safe and keep well. X
I think we have met once in the blood taking queue at Jimmys. If I am right I told you that you were famous as your story was used in the acceptance meeting for transplant.
Wow yes I remember that now had u just had transplant. I am doing well kidneys are a bit out of range and diabetes is still there not on insulin but my hba1c test comes back high but if taking a tablet will sort it so be it. Hope you r doing ok and taking care and keeping safe. Maybe c u again at jimmys some time but am on Friday clinics now. Xx
It would be nice to meet again I am still on Tuesday appointments. I'm doing good I had a minor set back in July with CMV which required 10 days back in hospital. I'm waiting for my blood test results and my telephone consultation my last lot of bloods showed 4 abnormal results, I had an US and nothing sinister was going on.
I hope things settle down for you with your kidneys and diabetes .
I also had a cmv in October last year which luckily was picked up by blood tests was in local hospital for a week on an drip then my meds got changed and was back on steriods for a short while. Tests now come back negative. Yes wud be nice 2 meet up after all this . Take care and keep safe. Xx
Many thanks for the responses, it provides great insight.
I really get what your all saying with regard to factors and fluidity of the list, can I just ask, if the surgeon stated 8 months sounds quite specific (albeit take with a pinch of salt) and the assessment Hepatologist stated a 6 - 9 months, surely there would be some form of base calculation/algorithm etc that exists to give their estimates on waiting times??
I haven’t found any docs yet with the actual waiting times, I’m just googling an array of buzz word in my endeavours, would welcome any assistance. I don’t suppose anyone has come across any docs that may capture forecasted and actual LT procedures dates.
As I say I have covert HE so I may not take everything in you have wrote, just something to mindful off as I can read a sentence and the last word or the content is gone within seconds. So apologies in advance if I have.
Katie, fingers crossed for your hubby and getting a positive outcome that suits.
Thanks to everyone else for contributions thus far.
NHS page says the average adult wait is 135 days. But this is average, as a guy who is interested in statistics that'll tell you that some folks have a really short wait (i've heard of folks receiving their call and t/p on the journey back home from assessment) and others who have been waiting years. The latest annual report on liver transplant is available at:- nhsbtdbe.blob.core.windows....
Cheers, that 135 days figure has been up for sometime I think and have they just divided the cumulative total days and divided by number of LTs for said period???
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