options?

[ladytibbie]

hi Everyone

Just wanted to ask if anyone has had of experience of living donor , what are the criteria and has full transplant from deceased donor proved more successful than from living donor?

Does living donor mean less time waiting for the transplant ? And can I ask the consultant to test me as a donor for my husband?

thanks

isabelle

[AyrshireK]

It would first of all depend on whether your husband is able to have a split or live donation .... some people waiting for transplant can ONLY have a full liver which can obviously only come via the traditional cadaveric route.

Is your husband actually on the liver transplant list at present? Live donation doesn't speed up the process of actually being listed for transplant but can speed up the process of having the operation once listed. Being listed only occurs after a full and thorough transplant assessment at one of the t/p centres and you HAVE to be on the NHS waiting list for transplant before the posibility of live transplant can be explored. Surgeons will always prefer a donation from a deceased donor rather than putting a healthy individual through the risky procedure that is live donation.

Live donation was an option when my hubby was listed for transplant back in 2014 BUT having thought about it we decided against because of the risk.

The donor has to go through a very similar full assessment to what the patient needing t/p does plus a psychological assessment regarding the risks and the mental impact.

Are you your husbands main/only carer? Post op you would be just as incapacitated as him in regards to driving and not being able to lift things for several weeks/months. As with any operation there is the risk factor - what would hubby do for example if the worst was to happen?

Whilst outcomes from live transplant are usually on a par with cadaveric donor ones BUT there are a lot of factors that come into play as regards pros and cons.

We were provided with a booklet about live donor transplant from Scottish Liver Transplant Unit who were the first in the UK to do live liver transplants. You can have a read at this booklet at:- weare.nhslothian.scot/scott...

All the best to you.

Katie

[ladytibbie in reply to AyrshireK]

thanks Katie

My hubby is on the transplant list , 8 years into diagnosis, consultant says his blood work etc indicate stable but I can see a decline in him and he is on more medication now to maintain stability. It seems his diabetes is more unstable than the liver . And was recently diagnosed as anaemic , so I’d like to know the root cause of that. I’ve also noticed his confusion seemed more pronounced and wonder that his lactulose needs upped. Sometimes it’s hard to talk to my hubby when he’s like that because he just isn’t able to recognise the difference in himself so can result in conflict.

I don’t think my husband would want me to donate if he thought there was a risk to my well-being and tbh there’s no guarantee the medical team would let me anyway. It’s just so much to try and process and it feels like if I know this stuff I will be better prepared. Thanks for all your input x

[AyrshireK in reply to ladytibbie]

Do you know what types of liver he was deemed suitable for? Was split or live mentioned?

Are you the same blood type and how's your own general health?

We ruled out even investigating the posibilities when my hubby was on list even though he was deemed suitable for live transplant (he's only 5 ft5 and very slight). Just too risky seeing as I am the only one able to drive and am his carer ......... two of us being out of action at the same time just wasn't an option. (NHS says 1 in 200 live donors pass away as a result of live donation).

More information on NHS liver transplant pages. organdonation.nhs.uk/become...

Katie

[ladytibbie in reply to AyrshireK]

we’re not same blood type. I am an O and he is A . I had a look on the link and have contacted the centre. We are same height and my husband is broad . There’s a lot to take in . I know we’re not there yet but I know things can change quickly x

[Refs]

Hi , I had a full liver transplant 15 months ago. And the new liver has failed completely, so I'm back at stage one again.

I was told by hepatologist

That having.a live liver transplant they can only check so much and things can be missed.

So I know this doesn't help a lot but I don't know if I would have a live liver transplant again .

[ladytibbie in reply to Refs]

I’m so sorry to hear that, after everything I’m sure you’ve been through. I don’t want to seem insensitive or to make light of your situation or presume, thankyou for being so honest about where you are . I know that can’t be easy to talk about. Can I ask , did they explain why it failed?

[Refs]

No, they just said they looked at the Liver doner and the liver looked alright for transplant, I don’t really how much they can check when the person is being kept alive by machine.But they have said they might have missed something when they took the liver out and put it in me.

So still don't really know.

🤷‍♂️🤷‍♂️

[AyrshireK in reply to Refs]

Yours wouldn't have been a live donation Refs if the person was on life support up until they took the donor organ - once the machine is switch off they are then a deceased donor (brain deceased most likely). The liver you got will have been thoroughly examined once it was removed from the donor to assess it's suitability for transplant unfortunately along the line something has occurred in your case that the liver has subsequently become deseased again and heading towards failure.

A truly live donor organ is when someone healthy donates a portion of their liver to the person needing the transplant - both the donor and the recipient then go through a period where their partial livers regrow and hopefully continue to keep both parties alive.

Brain deceased donation is usually the best since the person is having blood pumped through their liver via life support up until death occurs whereas a cardiac deceased donors heart has stopped beating. There are developments in perfusion machines where these CDD donor organs still have blood pumped through them rather than going 'on ice' as they were previously.

The retrieval surgeon and your own transplant team will have thoroughly assessed your new liver before it was put into you, it's at this stage that many donated livers are found to be too poor for transplant i.e. pre-existing conditions, fatty liver and such like that means they arn't fit for transplant.

I hope you get your shot at a fresh transplant and eventually go on to live your long and happy life.

Katie

[Refs in reply to AyrshireK]

Katie, you absolutely right. Brain death, and they waited for the family to say there goodbyesThem took from him and put in me. But they did say they may have missed something.

Thanks Katie

[ladytibbie in reply to Refs]

I hope you get the transplant you need to go on and live your best life. Sending you prayers and best wishes x