liver transplant

[66766]

Anyone know how little liver function they had left just before transplant?

[freddie76]

Just wondering what your actually trying to find out can you expand on this

[66766 in reply to freddie76]

Looking to find out when is transplant too late, too little function left, as in 5%

[freddie76 in reply to 66766]

I don't think ever too late but what have hospital told you

[AyrshireK]

The amount of liver function left is never discussed (& I don't think they even have a means of measuring this to give a % function score) and I know you have asked this question of the forum several times before. Every person is an individual, the tests which patients have at the regular transplant clinic dictates how poorly you are and that gives you a score (on the UKELD or MELD scale) together with what symptoms you are actually displaying and that will dictate how high a priority you are for transplant.

When transplant teams know they are going to receive a liver they then look at their lists of waiting patients and match up (A) who matches the liver with regards to blood group and body size and then (B) who is the most poorly in that matching group i.e.who has the highest priority of need.

The more poorly you are, the higher up the list you move. If you become too poorly for transplant whilst waiting it is more likely to be because a suitable liver hasn't become available rather than medical teams letting you hang on too long.

I hope that makes sense. I take it you are waiting for transplant just now and fearing your chance won't come in time. But trust your T/P team, the more poorly you are then the higher your priority you become and you are just then waiting for that matching liver to become available in your area. (If your need becomes SUPER URGENT i.e. they feel you need a liver within say 48/72 hours then you go onto the super urgent waiting list and patients on that get first dibs on any suitable liver regardless of where in the country it is).

Wishing you the best of luck.

Katie

[LAJ123]

I would absolutely agree with Kate.

If you are ill enough to qualify for a transplant who cares or needs to know how much of your liver is functioning.

Having said that - I did find it difficult to believe at the time when my consultant informed me and Lucy that I was living on 7% of my liver. I was trying to understand how I was alive. I know I wasn't feeling too good and I was there with quite a severe episode of hepatic encephalopathy, but surely 7% was not possible.

Needless to say about 4 months later I had a transplant.

Did I really need that information - did it change anything ? Could the information have caused me to give up hope ? Some things are definitely better to not know. Was this one of them ? I'm really not sure, some will handle that kind of information better than others. To be honest I was so muddled with the encephalopathy I didn't really take it in, but Lucy certainly did and I know it worried her.

This was because how was Lucy to know;

a) What percentage of function was too little to stay alive on

and

b) whether there was a point at which a very low liver function made a transplant impossible.

So probably all it achieved was uncertainty. However, they never suggested that a transplant was NOT an option at 7% as long as I stayed relatively fit enough for the operation and recovery period.

Remember what Kate said. we are all different and what applied to one may not apply to others. The only person who can answer your question is your medical team

Hope all goes well for you.

Jim and Lucy ( reply by committee )

[LAJ123]

PS - like Kate, I've no idea how a % could be calculated to such a specific figure.

[RodeoJoe]

What the others have said. But I'll also add that it's really important to let your tx team know if your condition changes. Like Kate says there a different priority listing's depending on your health.

[mrsmerlin]

I have to say that it would be wrong for anyone on here to answer specifically as you ask.

Those who have gone through a transplant can tell you of their experience only, as they have taken the time to above,

I am not convinced that you are on the transplant list yet or you would have gone through the inpatient tests and had your questions answered during that time.

Please trust your doctors if and when you get to that point they will know it's time to refer you to the specialist hospital and team. It isn't the same as the beginning of diagnosis as problems are a lot more visible.

Life is too short to consider the what ifs and dangers or you would be in a bubble in constant fear. Fight the disease rather than imagine it worse

Rita

[Hayls48]

As said above by others, everyone is different and priorities will change on how ill you are. A percentage was not something I was ever given prior to transplant. I was told that I needed it asap or I would become to ill to transplant. I had the call roughly 14 days later. But I was being closely monitored on a 2 weekly basis.

I initially didn't agree to transplant as I felt fine and due to other factors did not going onto a waiting list for a further 6 months. To be honest I did myself no favours as I was very ill at transplant and took a long time to recover. So if you are being offered transplant and have undergone all the assessments etc listen to the medics and go ahead. If I had my time over again I certainly would go ahead.

[Lperica10]

My aunt had hepatitis and was days away from death and she got a transplant. But like others have said she got it because she was THAT sick. If she wouldn't have got it she wouldn't be here. Also, my dad had cirrhosis and was told he had 5% functioning of his liver and he passed 4 mos later. Hope you get some answers!