Has anyone had experience with being a live donor or receiving a live liver donation?

[clarecica1975]

My mum is 66 and we got the go ahead on Friday for her to be listed for a liver transplant. I would like to be considered as a live donor. Any advice greatly appreciated

[AyrshireK]

Did your transplant co-ordinator give you an information pack about it? We were given one after hubby was listed last week - Edinburgh was the first centre in the UK to do live donor and they have an expert team and we got given a very thorough information booklet and health questionnaire should we be interested in it.

There is a lot to it and they will always prefer to go for a cadaver liver if one is available rather than put a healthy person through the rigours. You'd have to be a blood match obviously and you'd have to go through a lengthy physical and mental assessment process - not unlike the one your mum will have had to get listed to make sure you are fit enough to endure the lengthy surgery and recovery.

Does your mum need your support with her condition just now and will she be reliant on you post transplant for driving, attendance at clinics etc? Because you too would have the same lengthy recovery process - same abdominal scars, liver needing time to regenerate etc. You as the donor are unable to drive post transplant for some time and are likely to be unable to work for some months.

My hubby was listed (will be activated Thursday this week 'cos at his assessment they found some stuff and he needed an operation this past week) and I looked at it because I am roughly the same size as him and if I was a blood match I hated the thought of him waiting for a liver which may never come if I was able to give him some of mine and help. But we've discussed it long and hard and we've ruled it out, he needs me to look after him, I need to drive (clinic appointments every week post transplant, gradually decreasing), neither of us able to lift or move heavy stuff for the duration of healing and then to put it pointedly what if he survived his transplant and I didn't survive the operation (which it isn't unheard of for the live donor to struggle more than the recipient) how would that work out in giving him back his life? Although hubby is O+ we've had to decided to wait for a transplant via the regular means, hubby has been deemed suitable for a DBD, DCD & Split Liver so hopefully he will be successful in receiving one in good time.

All the best to you and your mum.

Katie xxx

[clarecica1975]

Thanks Katie. We are under the care of Addenbrooke's hospital. We did get a pack but there was no detailed information in it about live donation - either that or my mum hid it from me as she is not too keen on the idea of putting me through the process.

It's all a bit overwelming at the moment and I guess I just don't want her to have to wait for so long that her health worsens even more or that there is no suitable donation available for her. Unfortunately I just want everything to happen straight away but I fully understand that it does not work like that!

Your advice below is very helpful as I did not consider the after care aspect of all of it as well and it is definately going to be discussed more with my family in detail as it may not be the best option afterall.

Hope you and your hubby have a short wait xxx

[Brummi]

Hi Clarecica 1975, Do you think that you have may have misunderstood the meaning of the term " Live transplant". My transplant was a live one, we only have one liver , mine came from a person who had a heart fatal heart attack. If you wish I can tell you more.

[clarecica1975]

Hi Brummie - thanks for your reply. The research I have been doing is where you can donate part of your liver as long as you are the same blood group, good match, same size, pass all the medical tests etc so I would give my mum part of my liver and both parts would regenerate. I'm just worried that she won't get one in time / that it will fail but I suppose these are all natural feelings at this stage.

How long were you waiting and how long was your recovery time?

[AyrshireK]

Brummie, as Clarecica 1975 has correctly said there is now the possible of a spouse or close relative (providing they are a match and are fit enough to undergo the procedure physical and psychologically) to donate a portion of their healthy liver to a family member waiting for a liver transplant. Both undergo major surgery where the right lobe of the donors liver is taken and then given to the recipient in much the same way as a split liver from a deceased donor. Both portions should then hopefully regenerate to full size in around 3 months. The Scottish Liver Transplant Unit in Edinburgh pioneered this technique and is the leading centre for this and we were told hubby would be a suitable candidate for a live donor portion liver if one was available. We've discussed it long and hard and have decided it isn't really an option for us as no other family member is fit enough (through asthma and other such things) and he needs my care, mobility and driving after the transplant and as both of us would be 'out of action' for some time it isn't practicable.

Katie

[AyrshireK]

Hi again Clarecica 1975, just looked up the SLTU website and there is a PDF copy of the live liver donor handbook on there. It goes very thoroughly into what is involved in the assessment procedure, the operation itself and after effects. You should be able to access it here :- nhslothian.scot.nhs.uk/Serv...

I know exactly what you mean about watching your mum potentially get much more poorly whilst waiting for a donor liver, I feel exactly the same with hubby but having discussed the booklet thoroughly we've decided we will have to put our trust in the medics and hope and pray that a liver comes in time. We just couldn't support one another post transplant if neither of us can drive, lift, push, pull and stuff.

Your mum will (like my hubby) now be regularly seen at clinic and depending on the blood tests and what they see at clinic they will move up the list as their clinically need dictates it. Did you find out what blood group your mum is? Hubby is group O which although the most common can also mean the longest wait as O can be given to all other groups so although it is the most commonly given it is also the most commonly needed and demand does outdo supply. The rarer blood groups tend to have the shortest lists and people with rarer blood groups are also more likely to be registered as donor - perhaps already being blood donors etc.

Fingers crossed neither your mum, nor my hubby have to wait too long for their livers. I do wish you all the best if you decide to proceed with live donor but it is not something which can be entered into lightly and indeed the psychological aspect of the assessment seems to be the most thorough bit.

All the best, Katie xxx

[Dan68]

Hi my daughter was going to donate part of her liver to me and went through all the process. I was that ill they decided I needed a full liver transplant from a brain dead doner bdd. I was already on the list but once my cirrhosis turned to cancer I was put on the urgent list and recieved a transplant in 6 days. I'm A positive by the way.

Danny

[clarecica1975]

Hi Katie, Danny thanks for your replies.

My mum was only activated on the list on Friday last week. We got the call at midnight last night to go into Addenbrookes immediately. After lots of blood tests and being admitted we got the bad news that the donor organ was not good enough to be used so we went home very weary and disappointed but it gives me great hope that we will find a suitable donor. My mum is also A positive - don't know it that helps when receiving a donor so quickly? She is quite well at the moment all things considered so we were surprised to have got the call so soon!

All the best

Clare

x

[AyrshireK in reply to clarecica1975]

Clare, Sorry to hear your mum didn't get the operation this time round but I am sure it will come. Being A+ is pretty good news as we were told, rarer in number of donors (but rare blood group folks also tend to be the ones who give blood and do register to be donors) also because it is rarer there are less folks waiting for that A+ liver so more likely to get the call. My hubby is listed now, sadly waiting for a common as muck O+ liver - yep, plenty of them but also loads of folk waiting for them and also O livers can be donated to all blood types so loads of demand for them.

Hopefully all of us waiting get the call we need/wish for as soon as possible.

All the best to you and your mum, good that she is still healthy enough and can bare the wait, hope all of our loved ones and contacts on here get the livers they need in plenty of time.

Katie xx