Hi, just wanted to ask anyone who knows what protocol is involved when a close friend with a compatible blood group offers to give a portion of their healthy liver to me. The person lives in the USA and has been a friend for a very long time. I imagine I need to talk to my hepatologist first but wondered how UK doctors feel about foreign donors, whether they are acceptable as a non UK resident. Not sure at the moment if I need a transplant but things aren't great. Any opinions welcome. Liver very cirrotic, spleen huge as is liver. Partial donations is an unknown area for me plus the person who is the selfless giver.
julie
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jules45
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Hi Julie, first off you'd obviously need to be listed as needing a liver transplant and during the assessment by looking at your body/liver size and 'needs' they would decide whether you'd be a suitable candidate for a split liver or a live liver - not everyone is suitable for accepting a partial liver.
There is a very long procedure that the donor has to go through too with psychiatric tests as well as a medical tests to ensure they are fully aware of the implications of donation and the health risks it potentially poses to them. Surgeons will ALWAYS prefer to go for a cadaver donor rather than live purely because of the risk to the donor since they practically go through the majority of the same trauma you would as a recipient and they loose their gall bladder, suffer mobility issues together with all the other risks associated with major surgery.
The non-UK resident bit would potentially be a stickler because he/she may not be covered by NHS for their care etc. , might not get VISA entry clearance to come here for surgery and then who would do their follow up care going forwards because this isn't only a pop in and out sort of job - the implications will last a while. I can't say either way whether it would be yes or no.
Your donor would have to be a blood match and have a sufficiently healthy liver of a good size in order to even think about donation. There is a downloadable leaflet about live donation on the Scottish Liver Transplant Unit website at :-
Hi Katie, thank you very much for that important information that you provided. I have been thinking of both sides of the Atlantic in terms of the whole thing and knew it would not be a 'walk in the park'. I've also been thinking about what you said in terms of which country would look after her. She is financially solvent and able to support herself immensly but the lasting health effects on her worry me greatly. We are just talking about it at the moment but she seriously wants to give me life. We will carry on talking it through and I said I would talk with hepatologist but her kindness is so heart wrending it is unreal in this day and age
She would have to be very 'solvent' to pay for her part of the procedure (even if that was possible to do) - i believe a liver transplant costs upwards of £50,000 - dont know how they would cost live donor surgery, but i would guess it would be a substantial sum.
Like Katie says, you need to be on the transplant list after an assessment first. No one would ever attempt this surgery without at least that in place.
After being on the transplant list there IS a chance that you wouldn't get a donor liver in time to save your life, but I believe this is about 10% or is it 20% of patients? I imagine this is made up mainly of patients with either secondary conditions, or are of rare blood groups or for whatever reason can't accept the majority of livers.
You obviously have a very good friend there, but I think it's unnecessary to go down this route just yet. For both patient and donor this is very risky surgery. I'm not certain but I imagine it's more risky for the patient than a "normal" liver transplant.
What I'm getting at is that if you need a liver transplant you should progress a "normal" one before a live donor one.
Hi, thanks for reply. I suppose I thought having a part of liver was less terrifying than having a whole one. The person very kind and thought so too. Oh well, back to square one. Your input and Katies much appreciated.
Hi, don't worry, your post was very helpful in respect of putting things into perspective and knowing what to ask when I next get seen. All info greatly appreciated. Today I feel zapped of energy and my bp is low since this beta blocker so I suppose today I'm looking for that miracle cure!
Been to st James today with my husband and we asked the same question if a live donation would be suitable -consultant said ideally you would be better waiting on the list and didn't seem to encourage that route
Hi Katherine, it's Jules. Share with you the frustration as I am blood group o positive which means I can accept blood from anyone but it seems they prefer a dead (hate using that word) doner. I will ask consultant same question and see the response.
Yes it's strange as at his transplant assessment last year they talked about live donations and like you a friend of my husband has volunteered..however my husband can't get his head round someone else being put at risk for him so I can't see him ever agreeing but like you say how wonderful of these friends to offer..he has been reasonably stable ticking along but yesterday they said they may reassess him and perhaps think about putting him on the list whilst he is relatively well as the consultant said you will be added one day so why not now before you become sicker. We shall see what happens at his next appointment
All recipients are asked that. They prefer, ultimately, in adults to use a full liver. I was told that partial, or lovbe donations are for babies, not adults. We were also told its best to check everything on the list. To keep all options open, but the surgeons normally chose full livers from deseaced donors. And then with that they discussed the difference between stem death and non stem death donation.
The last time I heard of a "live donor" for liver transplant they had to be a family member. I cant remember what country it was though or if its old rules that have now changed.
HI Ralph, yes, she is a very special friend. She even had lots of checks on her liver before even mentioning it to me, paid for by herself. Hoping she can come over to have some chill out time here in Wales. Her thought was selfless but reality different unfortunately.
Hope you are well. I remember when I was unwell I was told that adults usually in most cases require a whole liver and partial liver doesn't work. I think it usually depends on when they open you up at the surgery table. I didn't have cirhossis but even then when my brothers, sister, nephews all kept asking the doctor if they can give part of theirs, the doctor said they do not like that route. However my surgeon told me that once they open me up and if I do not require the whole liver then they would do what they call a 'piggy back' surgery where they only give you part of the liver and the rest would go to a child. However I needed a full liver and also they told me the implications and the process is the same in that you'd need to take anti rejection, same amount of risks involved etc.
I felt the same too in that small window of time that I had had. I kept hoping I wouldn't need a transplant and then when I finally accepted my fate I was hoping the 'piggy back' surgery would apply to me. However in the end I just accepted that I didn't have long left. I just didn't have any time to process how unwell I was and how a transplant even worked hence the long recovery and a bit of anxiety which I go through.
Your friend is really kind and caring. However yes if you are listed then wait and see how that goes?
Hi, frustration is paramount in all this. It seems I should sit back, wait until listed and then go with procedure and still have my friend as support.
Hi Julie, I was told the same thing as some of the people on here, that a living donor usually only applies for consideration for a parent donating to their young child. The risks to the actual donor are so high most surgeons won't even consider undertaking the surgery, whilst in hospital I met someone (aged only 20) who's parents offered part of their liver as she only had days to live, the surgeons and doctors refused as they classed it as 'self sacrifice'. This was also told to another lady in hospital in a similar situation. A full liver is always better than a part one, as the recovery would be longer as the liver needs to grow to full size and there is a greater risk of bleeding as the liver has been cut. You can always ask your consultant anyway, but I suspect you'd be better off with a full liver especially as you've so unwell and I'm sure you'd be worried about the health implications on your very kind friend. Xx
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