Living liver donor

[Tina_1234]

Hi all,

I wanted to ask if anyone knows about a network or an organization in the UK where you can look for a Living liver donor? I found out that in the US there is a network called UNOS for something like this.

Thank you in advance!

[AyrshireK]

ALL liver transplantation in the UK is done through the NHS so there is no private route to liver transplant surgery. As a result there is stringent protocols in place as to who can be considered as a donor and also not all patients needing a transplant are actually suitable to receive a live/partial liver transplant.

I take it this is in relation to your hubby, is he formally been listed for transplant and been deemed suitable for a split liver transplant or live donor?

There is a whole raft of information on live donation at the NHS page :- organdonation.nhs.uk/become...

Family and friends can volunteer to donate to someone they know and this is managed through your own transplant centre who would have to assess the potential donor.

It is also possible for people donate a portion of their liver to a stranger but all the 'altruistic' donors are registered through the NHS too - people can actually sign up to volunteer to donate to strangers I guess there is no 'private' matching going on but all going through the NHS. I see they have a page where people can register their interest in being a live donor. organdonation.nhs.uk/become...

Best wishes,

Katie

[Tina_1234 in reply to AyrshireK]

Thank you, Katie for your response. He is indeed on the list, well, on and off. At the moment he's been 'frozen' as had breathing issues and now they are investigating. Really frustrating. I have seen that sometimes strangers would offer to help so I was hoping there is a place where you can ask. I know it's a lot but when you are desperate you would do anything for your loved one. Thank you again for the information.

[AyrshireK in reply to Tina_1234]

I think the point is it has to be a truly voluntary donation and the donor has to go through the relevant channels and checks, the NHS will no doubt have a list of donors who match waiting patients.

Was hubby told he could actually receive a split liver or live donation? I know my hubby was when he was on the list - he's only small 5ft 4 or so and small framed so he was told he could have a split. We were provided details at Edinburgh of how family could potentially donate but decided it was way too much to ask and at that time there was no altruistic donation option.

I hope your hubby gets reactivated soon and hopefully gets his transplant.

Katie

[Tina_1234 in reply to AyrshireK]

I wasn't discussed in a great detail. King's in London prefer a 'regular' route.

[AyrshireK in reply to Tina_1234]

Surgeons always prefer the deceased donor route because they don't like putting a perfectly healthy person through a potentially dangerous operation BUT 3 in 100 transplants in UK now use live donation - more common for children than adults because size match comes into play.

It may be the case that your hubby isn't even suitable for a live donor transplant - it is worth asking the question when you are next at clinic and that way you know whether or not that is even a realistic option. They should have discussed the different livers your hubby is suitable for - some can only take a brain deceased donor organ, others like my hubby was are listed for Cardiac Deceased, Brain Deceased, Split and Live.

Some folks tick boxes which would allow what might be considered less than perfect but better than their own diseased one (donors who had Hep C, donors with previous cancers, liver with some fatty build up already).

Katie

p.s. my hubby was on list for 10 months, mixed messages at every clinic appointment "See you next month unless you've been transplanted by then!", "I don't know why you are even on the list, you shouldn't have been listed!". After the 10 months he was delisted because bloods improved after his spleen died in embolization of aneurysms operation. 7 years later still ticking along and still relatively stable though not without symptoms.

[Tina_1234 in reply to AyrshireK]

We agreed to any liver. He's been on the list for nearly year and a half. Within first two months he's been called in twice with three livers that were not good. And nothing since then. He's been stable but constant discomfort all over his body and now his oxygen levels are dropping so he's been put on oxygen. Glad to hear your husband is stable but I can imagine it is not easy when you are not 100% well.

[Ewife in reply to Tina_1234]

this sounds horribly similar to us. I dread every appointment because I don't even know if I want him (husband, age 42) to have transplant or not...feels like each time I come to terms with what they say, they change course. I'm thankful he's stable, but can't come to terms with him being this poorly for the rest of his life. I can't believe he would have a long life if he didn't have transplant. I dread him suddenly having a complication which means he can't have transplant. But then what if he didn't survive the op? What if he gets diabetes or kidney damage and comes out worse than he is now .....

we were asked a year ago if we wanted to consider living donation, but can't face having the conversation. I would don't myself, but that wouldn't make sense because I need to nurse him. I can't face my kids offering themselves, and he doesn't have any siblings or parents suitable. Now I wonder if we should have considered it. I wish there was a simple, logical clear cut answer to it all

thinking of you

[Tina_1234 in reply to Ewife]

it is very hard. Wishing you and your family all the best xx

[OMBRAMAIFU in reply to Ewife]

I am not in your position, but I do sympathise - such huge decisions that you have to make, so much information to take in, each appointment giving you yet more to think about... and all the time living with the worry of what complication might arise in the meantime.

My partner is in his 80s, so not a candidate for transplant (and with so many young people on the waiting list - he wouldn't want to be anyway) - I just care for him the best I can (I'm also 80) and we cope; but, oh!... those appointments, the check-ups, the medications - they just dominate your life and virtually dictate everything you do, and you and Tina_1234 have that long, long wait for a suitable donor.

But at least our 'path' is clear - we don't have these huge decisions to make, or all the information to absorb which is sometimes overwhelming. I cannot imagine what it must be like when you are only in your 40s with the rest of your life in front of you.

I hope both you and Tina_1234 get some clarification on what route to take, and some peace of mind knowing that you've made a decision. Wishing the best outcome for both of you. Stay strong (as carers, we have little choice in the matter!).

[BritishLiverTrust3 Administrator British Liver Trust]

Dear Tina_1234

We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).

If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust

[Tina_1234 in reply to BritishLiverTrust3]

Thank you!