hi, my partner has just been accepted onto the transplant list with a UKELD of 56 and blood group A (this is relevant as have been told the wait for this group is shorter). He has just had the consent form and agonised for ages over which boxes to tick in terms of what livers to accept. It seems so ungrateful to be fussy but he has some anxiety over medical issues which is driving his decision.
He has said no to hep positive livers which I think a lot of people would understand but also to DCD livers. He is currently stable and should his condition worsen I guess we could revisit this. Can anyone else talk me through what they decided thank
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The number of cardiac deceased livers are on the rise - the opportunity for a brain deceased one are reducing because less folks end up with serious brain damage with better road safety equipment now. Because BDD still have blood pumping they are often the best available - so I can see hubbies point in saying only BDD BUT they are also the best for splitting so when one becomes available (especially in a rarer blood group) it's more likely to get split so that a child and an adult on the list benefit. Is hubby listed as suitable for a split?
I personally wouldn't rule out a cardiac deceased donation. Most centres now in UK are using the perfusion machine which in effect takes over from the heart and maintains a blood flow through the donor liver - thereby over-riding some of the issues which used to arise with DCD livers. There are all sorts of innovations happening that make previously marginal livers now transplantable.
The future learn course on liver transplant tells you about how they are widening the donor pool and demonstrates the perfusion machine.
hi this is so helpful, if it were me I would say yes to both but he is so anxious about it that I didn’t want to overload him with info. His hospital does have the perfusion machine. He has said yes to a split liver. I know some patients can only accept certain types of liver, no one has discussed any restrictions in his case. I think what he will do is probably once a couple of months have past and he is feeling calmer about being listed he will revisit the decision
At the end of the day they will only use a liver they feel is suitable for the patient. So even if you tick the DCD box, if that liver isnt good enough for him then it'll not be offered anyway. Indeed, they may feel that only a DBD liver may be suitable for him. That apparently was the case for me.
If it were me i'd tick the box to accept a DCD liver, in fact i did, lol. It at least keeps your options open.
I think being listed has come as a bit of a shock, and it’s a lot for him to take in. I didn’t want to push it but I also think he should have ticked DCD. Hope you are doing well post TX
There's always an opportunity to change his mind. Just speak to the coordinators when he is ready or speak to the team at one of his clinic appointments. So its not a big issue for now.
I would tick all the boxes because when you do finally get the call, if the liver is not suitable, the surgeons will not go ahead. I’ve been in this situation. It’s a lot to take in. Mine was BDB, CMV negative to CMV negative. There is a Facebook Liver Group which is fantastic, full of pre and post Tx with lots of people having had Hep livers etc and talking about their experiences. This may help him and his anxiousness. Wishing you all the best.
I ticked every option except HepC. However, my consultants narrowed my suitability down to one choice only, BDD.
At that time the new fangled perfusion machine was just starting to be used, and I was asked if I would consider having a liver kept 'fresh' in one pre transplant. I politely refused just in case. 😉
Hi, when i was first given the consent forms i agonised about what boxes to tick but i discussed it with my consultant and they assured me they would only give me a liver that was healthy so i ticked all the boxes.
Had my transplant in May 2017 after 8 monthson the list im A+ as well, it came from a 74 year old, was mildly fatty (had transplant due to NASH) and donor was cmv positive and i was negative. My donor was brain dead, the mist common type of donor as they are on life supportin hospital now 5 years post and my liver is absolutely fine and ive never had any problems with it.
If you are on Facebook we have a wonderful, friendly and knowledgeable group called liver transplant support uk
Hilary x
I said no to Hep B and C I think and no to cancer or previous cancer. I don't want to go through all of that and then discover I have an infection or worse have cancer. Most of the livers come from dcd so I am ok with that.
They also asked me for permission to do 3 case studies 1. was taking biopsies - no thanks, but agreed to the other 2, when a liver is removed from a body it develops I forget, but they are trying a specual solution which can remove whatever it is and then there is that test where they perform all these procedures while the liver is hooked up to the perfusion machine, as far as I am concerned that just improves the liver before the transplant?
I had the same decision to make last week. I felt the same in that I didn't want to potentially introduce another condition to my body. Then after my ungrateful thoughts had done their thing I realised Wow, this is such a precious gift, the chance to keep living longer. A person has passed away for the transplant to happen and that brought me back to reality. I consented to all options. Xx
argh, I know we had the same conversation and feel terrible it appears we/he is being ungrateful, nothing could be further from the truth. We understand the magnitude of him being lucky enough to get his call and what that means for another family. My partner has dealt with mild anxiety since childhood and a lot of it centres around medical issues- 4 months ago he couldn't even say the word 'transplant' so he has come so so far, I am sure over the next few months he will wrap his head around being listed and review his decision. Thanks so much for sharing your perspective
I have been trying to get a support circle organised because I have no family. I'm 52 and have my partner but no other family. My dad (taxi!!!) died june2010 and mum followed him December 18th 2012. I am an only child so I'm feeling very vulnerable .
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