So I’ve received a letter from Kings stating that the transplant list is changing. Anyone else received a letter today? The letter at the front says the following (see photo) and the back part states;
The change to the new scheme will be seamless for patients. Your transplant centre has already supplied the information needed to work out your TBS for any liver being offered for TX. Waiting time accumulated on current list will be carried over to the new scheme.
While there’s lots of information, waiting times for blood groups aren’t mentioned and no clarification as to when this is actually going to happen.
So thoughts?
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Chelle_
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I am hoping this means you can get your transplant a little sooner. I have cirrhosis from PBC but I have been folowing your posts. Sending prayers a nd cheering for you from the U.S.
My heart goes out to you again Chelle, as I know just how much you want this. I think in your case, there's always going to be someone who's need is greater than yours, and the list still keeps on growing.
Hi chelle, first off how are you and your family? hope dad is ok .. Well as someone as yet is not on a tx list i just presume it is your dr and the team who put you forward for tx depending how much you need one. Reading this is seems that even after being placed on the list you then have to be assessed again .my thoughts are
How can they say who will live the longest for a start... This to me is irrelevant as we all know that complications can arise post tx anyway.
Reading in to it , it now seems even harder to get a transplant..🤔.its good they are expanding it from not just regional but how does that work? Bit confused about it to be honest. Something i will bring up in 3 weeks at my next hepatologist appt. Keep positive hun xxx
I was very lucky I received the last liver at the QE2 they could allocate themselves.
The scheme will give everyone access to the whole pool of available livers, so could in theory increase you chance.
It has been well explained to me from the Royal Free. In theory it is a bigger pool of patients matching against a bigger pool of donors so for most it should be neutral. It is meant to deal better with patients who were on the edge of the catchment areas and were either winners or losers in the old system. I agree, it is a bit worrying that the rapport you build with the transplant hospital won't count for as much, but it has been years in the planning, so it should be fair. Fingers crossed.
I don't know much about the whole process but the letter is a bit vague isn't It? For instance it's not telling you what the 7/21 characteristics on the new system to match are? It's good that your time waiting gets carried over though. I hope as some others are saying it increases your chances chelle,I hope you get your call soon. Xxxx
All a bit hard to digest C... let's hope the powers that be treat people with a good chance of a long life as at least equals to those that they define as 'Super Urgent" ... aka - I was told if you ain't gonna make it, what's the point .. give the liver to someone who might. Brutal, but I guess it makes sense??
It all boils down to your liver coordinators entering the blood results/tests/scan results into the system correctly and efficiently.
When you are able to check that things are being recorded correctly then that is the key really.
But you must be aware of the information they wouldn't get - GP visits - local a and e visits so all these things - you have to let the coordinators know so they can enter it. Discharge letters/medical notes - I would ask for these and make sure I handed copies over to the coordinators - otherwise it could take upto 6 months for GP/local hospital to get information over to your liver coordinator.
Any medical/holistic treatment linked to your liver must be shared with the coordinators.
All this ensures that they have an updated version of events.
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