my partner is at the very early stage of transplant assessment and today our transplant co-ordinator has told him that based on his current bloods and his blood group (A) she expects that if he were to be listed for transplant it would be a wait of weeks rather than months. He is actually not hugely unwell down in a large part to the success of the diuretics but sodium could be a concern and if diuretics needed to be stopped then I expect they would speed up the assessment process. They are going very slow to help him get his head around it all. Has anyone faced similar, being told they would probably qualify quickly but holding off? Anyone with blood group A any experience of wait times. Its a bit of a balancing act at the moment between wanting to get him on the list whilst he is still strong and well (relatively) and not wanting to rush him to process everything
blood group and being listed - British Liver Trust
blood group and being listed
As blood group A is relatively rare the waiting list of patients with blood type is is fairly small - compared to O which is the most common blood type so the majority of patients waiting will be O.
Obviously the majority of donors will also be blood type O but as O is the universal donor it can go to other blood types too.
Blood group A donors will be fairly low in number but as soon as one comes up then the shorter list makes you get the op sooner (hopefully). It will however always be allocated to the poorliest person on that list (and who matches it size wise best) so it doesn't technically mean he'll be days or weeks away from the op.
It is best to get it whilst he is fit enough. If he meets the criteria for transplant then he needs it - they don't give them out for lifestyle improvement it is to save lives so if he has the chance then don't let it pass you both by.
I know that forum member TT-2018 still waited 18 months for a Blood Type B liver so a rare blood typed doesn't necessarily meant a short wait.
Best wishes,
Katie
I am pretty stable at moment with diuretics keeping my ascites in check. But I have had a few awful episodes to remind me that I am ill. Wait time is pretty random as they can’t tell what is going to come in. I am blood group B and short to boot, so been told my wait could be anywhere up to around 2.5!years. Nine months in so slowly chipping away at it and did have a Failed call up after two months on list, so you really never know! Good Luck to you and your husband x
As I know an emergency (urgent) liver transplant if no other option can be performed with incompatible blood group AB0 (Rh factor is irrelevant). After that higher level of immunosuppressants is needed but the output is not bad genarally. That's the procedure here in Poland maybe in UK is different situation.
I have a few Polish friends who live there and they talk highly of the transplant doctors (though none of them have liver disease, it has just come up over conversation, what are your dentists like, how good are the doctors, what are your hospitals like, etc....), how overall is the liver transplant situation there and what is the cost? I am not searching at all, I am just by nature curious and always trying to learn about new things. Thanks!
It is covered by public insurance. You cannot have it privately. For adults only dead donors, it is not possible for living even for closer family members.
Thank you, it's too bad they stopped doing the living donor transplants they were doing earlier, that might have helped a lot of people. Maybe it was a price thing, I guess we will never know why the stopped doing the live one's. Thanks for the update, I am always trying to learn new things, habit of mine since I was a kid!
The answer is because is too risky for donors (even death not so often but still). Or at least it is seen like this here. I think in the USA there are doing it despite this fact. However you can be a donor for a child (smaller part of your liver is needed so it is less risky). But you have to be a parent or be some family member (court approval needed in this case).
Thanks!
Hi Rshc
If you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 10am to 3pm on 0800 652 7330 (excluding bank holidays)
Best wishes
British Liver Trust
Hi, I have blood group A and was listed at 14.00 on 15th of December 2021Had the "phone call" at 2.00 on the 16th of December 2021. Unfortunately, the liver was not good enough so I finally had my transplant on 24th December 2021. So very quick. I had mentally prepared for a 12 month wait so I was a bit in shock.I have had to learn to go with the flow, not worry and relax as I am in other people's hands. My current favourite phrase is " it is what it is".
All the best
wow that is fast. Our transplant co ordinator did say yesterday based on the current wait times she thought it would be very quick, weeks she said and my partner isn't ready yet mentally so we are meeting with her weekly at the moment to keep a close eye on things and inch my partner forwards to a place where he can cope with the next stage. I hope you are doing OK?
I am feeling great. It is amazing how quickly the body recovers but we are all different. How we cope is different. I am a control freak so letting other people take lifesaving decisions on my behalf was hard but had to be done. I had to trust the experts. They know what they are doing! I was not feeling very unwell at the time so would not say I was very poorly but had hcc growing quickly so every decision for who the transplant team "chose" as a recipient is extremely complex.
I am thrilled to hear how well you are doing. Every good news story helps my partner start to move to a place where he can accept this
Hi my blood group is AB+ and I have been on the waiting list since October 2022 and in and out of hospital a few times, I will say the doctors said they are not going to let me get that bad again, that was because I ended up with sepsis twice and was really ill. But it’s just be patient the worst thing is thinking about going away to see friends, do you go or not in case you get the call 🤔. Stay Safe All
Dogbot 🐶🌈Dave
I'm blood group A- and my transplant came 6 weeks after listing. To be honest though, if they think you are ready for transplant then, trust me, you need the transplant, lol. Even if you may not feel the same. Getting the transplant quickly is a good think too as it means that there's less chance for further deterioration. This should then help with recovery afterwards.
I think Katie has already pointed out that blood group A tends to be quicker as there is less demand for those. But looking at the overall averages the difference between the various blood groups isn't that different. When i last looked i think the average wait time for blood group A was just over 2 months and for others it was around 3 months. There can be quite a range though for any blood group. NHS B&T i think still publish the annual stats and those averages are in there and can be found with an internet search.
Hope that's helpful.
Hi, I'm blood group A+ and was listed for 8 months before I had my transplant. I didn't feel ill but had a blocked portal vein, transplant due to NASH cirrhosis in 2017.Good luck
Hilary ❤
Hi my son is blood group B, he's 18 years old & was diagnosed just before his 16th birthday in September 2019, & we are still waiting.
gosh what a long wait. I hope he doing OK and that he gets his call soon.
When you say he's still waiting - I know he was diagnosed two years ago and there was a suggestion he may eventually need a transplant but has he actually been formally assessed and listed for transplant at one of the major centres? If he hasn't then he isn't yet on any transplant list so isn't technically waiting for a transplant at this time.
The wait times being quoted by other posters are the length of time they have waited or did wait following their official listing for transplant - assessment for transplant varies from centre to centre but is normally several days of tests, chats and assessments to see if someone is in current need of transplant and to make sure they are actually fit enough to have one. At the end of all the tests a multi-disciplinary team then sit down and make the decision to list or not.
I know you've only posted the once so things may have changed in the interim but it doesn't look like your son is actually on the transplant list as yet.
Katie
Hi Katie , My son has Cirrhosis of the Liver caused by Auto immune Hepatitis. He also has varices, a swollen spleen & his blood is not clotting. Yes he has been assessed by St James, Liver Team & was placed on the waiting list in August 2020. He is very down, as he is still waiting after all this time.
Naz.
That's such a long wait if he's formally listed but sadly the supply of donor livers is so low that they ALWAYS go to the most poorly person on the list right round the UK & there are always people going on to the list week in and week out who are no doubt more poorly that your son. Varices, splenic enlargement and slow blood clotting (whilst bad enough) arn't symptoms of serious decompensated cirrhosis i.e. your son still has waiting time available to him. Fingers crossed being a rarer blood group his call will come sometime soon. I know how hard our 10 month wait was when hubby wasn't likely to get a call with him not having the more symptoms of cirrhosis.
Thanxs for your kind words Katie. It is really difficult to watch my son, slowly deteriorate, he gets very tired & very down, it's so much for him to deal with at such a young age. I just pray that God will answer our prayers soon & we are not waiting much longer.
I am so sorry he has had such a long wait. What is his UKELD if you don’t mind me asking?
Thank you, for your kindness & support. His UKELD is 53, and his bloods are stable, so this is one of the reasons we're still waiting for a match.
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