We have seen the Heptologist - British Liver Trust

British Liver Trust

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We have seen the Heptologist

Bs1524
Bs1524

Finally the day arrived and he was great. He told us the the Child’s Pugh score was 10 and I can’t remember the name for,the other score but he said to be considered for Liver Transplant the score is 49 and my husband’s score was 51. He is putting him on to Rifaximin and wants him to reduce the amount of Lactulose. If the Rifaximin doesn’t have the required effect then he will be referring him to the team at Cambridge.

As we drove away he said to me well that went well it was all positive. I don’t think he gets it. As the Heptologist never actually said that cirrhosis cannot be cured my saying it doesn’t count. I think he is refusing to see the reality of his situation and he has been told to it would be better for him to stop smoking as it dilates the blood vessels.

He wants him back in five weeks.

18 Replies
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The UKELD (United Kingdom Model for End Stage Liver Disease) score is the one for which 49 is the minimum score to be accepted onto UK liver transplant list. (It is a calculation based on numbers for serum creatine, serum sodium, serum bilirubin and blood clotting time - INR).

A Child Pugh score of 10 is just into the most serious category (Child Pugh C is scored from 10-15).

The smoking really needs to cease if at all possible. Transplant assessment will check for lung capacity and there are numerous breathing tests, if you don't get through those then the anaesthetist won't give the go ahead for transplant. As the lungs need to be able to cope with being on bottle oxygen for hours or potentially days and if they arn't up to it then they won't risk the op.

You could do with getting a quiet chat with doctor alone (or drop an email or letter) to get them to put this situation into black and white for hubby. Like you say he's not accepting it from you but from a medic he might but they have to not be so fluffy about it.

All the best,

Katie

Bs1524
Bs1524 in reply to AyrshireK

He agrees he needs to stop in fact he wants to he started when his head was messed up by his estranged daughter and stupidly it increased from the odd one when he became more ill. I am trying not to nag him about but it is such a shame after giving up smoking eleven years ago☹️

Hi Pam,

I can't comment on the Child Pugh score as when I was involved with that it was in scores of A, B, C, etc so I'm not sure how many grades would be in an A, or B, etc

If the 51 that you are talking of is the MELD score, then that is high (I was 54 when put on the transplant list) If the 51 is the meld score then it is hugely unlikely that his condition can be reversed.

I had my transplant at Addenbrookes, Cambridgeshire.

They have a perfusion machine there that helps to keep the donor livers in the best condition possible while the recipient is made ready for theatre so this is a definite plus.

The very best thing that he can do for himself now is to give up smoking and eat as healthily as possible, little and often to keep his energy levels up and help stop any further muscle wastage. Do what exercise he can manage.

Basically do all he can so that if he has to go to assessment for transplant he can be seen to be seriously trying to stay strong and healthy against the odds.

I hope that he begins to accept his situation and tries his best to help himself.

Very stressful for you I know going through all this and doing your very best on the side lines.

Keep posting Pam, we're all here to support you.

Wishing you the very best outcome.

Alf.

Thanks Alf everyone has been fantastic with advice and support. The smoking is so stupid once I got him into hospital last May he was so depressed and basically he had given up. He had always said if he had a terminal illness he would start smoking again and I think,that is what happened with him

I understand what you are saying about him thinking that if he is terminal he might as well smoke again, but in actual fact he could have a transplant if accepted on the list and go on to a new life.

If he is not aware of the true hard facts he won't be able to make the right decisions that will help him get a transplant.

I know that you want to protect him from the hard facts in case he decides to just gives up but I would have thought that if he were fully aware then he would see a liver transplant as the light at the end of the tunnel.

The sooner he gives up smoking the better as it's one of the questions that they will ask at assessment, they will want to know when he had his last cigarette.

My scores at assessment were not far removed from his and I was only on the list for 10 weeks before I got my transplant (Meld 54 Child Pugh C).

So the sooner he gives up smoking the better, it will go toward the length of time that he hasn't smoked when they ask him about it at assessment.

Alf

You are right I think I will give him a few days and put it to him the way you have phrased it. I spoke about stopping smoking on the way home from the hospital and he said he understood what he needed to do but didn’t want me on his case. I get that sometimes the more you push the more they push back. Ultimately it is in his hands I have gone through that they are looking for someone who will take care of such a marvellous gift. I have considered live donation but not discussed that with anyone yet.

The only people that I know of personally that went through the live donation procedure (not here but in India).

The wife donated half of her liver to her husband. The husband made a full recovery and was back at work after several months but the wife has been in a lot of pain since the operation and it seems to be ongoing. So a lot to think about.

I hope that when you have that talk with him that he sees sense.

I wouldn't leave it too long because it's in his own best interests.

Very best of luck with it.

Alf

AyrshireK
AyrshireK in reply to Bs1524

When my hubby was on the list he deemed suitable for live donation but you've got to consider how much help will he need post transplant.

He won't be able to drive, lift for months, push, pull, carry. If you are his only support - then as a live donor you can't do all the same things because you basically have the same wound, you lose your gall bladder and can potentially end up in a worse state than the recipient.

We totally ruled it out even though i'd have done everything for hubby I could. The big question because there is a great risk to the donor too is what would happen if hubby came through it but you didn't?

Surgeons ALWAYS prefer a cadaveric donor rather than putting a totally healthy person through such a risky procedure. Edinburgh pioneered and did the first live donation in the UK and they provided us with this document.

services.nhslothian.scot/sc...

Not every waiting patient is suitable for a live / split donor liver. It depends on body size and severity of condition.

Wish you both all the best.

Katie

Bs1524
Bs1524 in reply to AyrshireK

Thanks Katie, I have been reading up a little and not sure it would be right. We had a similar problem last year as I was just out of hospital having had emergency open gallbladder bladder removal and of course he couldn’t do anything either. I also have my boys and grandchildren to think of.

AyrshireK
AyrshireK in reply to Bs1524

It's massive, you would both have the same abdominal scars so the same limitations on you both. We ruled it out and hubby wouldn't dream of me even being tested because we had to think, how would we get the 100 mile each way to clinics at Edinburgh for a start? How would we do the shopping? if I was just as debilitated as him. It wasn't worth even thinking about, if you are the only care giver then who is going to look after you?

Whilst we'd both do anything and everything for our hubbies, you just can't when you are the carer as well as wife.

Katie

Bs1524
Bs1524 in reply to AyrshireK

Thanks Katie I pretty much have come to that conclusion, we can’t both be out of action not withstanding what could go wrong.

Hidden
Hidden in reply to Bs1524

Hi

I don't think I can add anything else to what has already been written but I just wanted you to know that I've been thinking of you and you are in my thoughts and prayers. With all my love to you both Lynne xxxx

Bs1524
Bs1524 in reply to Hidden

Bless you Lynne, thank you.

Hidden
Hidden in reply to Bs1524

You are very welcome. Love and hugs Lynne xxxx

Are you saying he still drinks as well as smoking?

No he does not drink at all, his last drink was 12th May 2019. He started to smoke since his diagnosis not a lot but.....

Hi there. My heart goes out to you. Cambridge is the best place to be cared for. Your husband cannot let lung function scupper his chances. It is possible to get healthier and live a better quality of life pre transplant.

My very best wishes to you both. 🤗

Thanks Marty, I feel the penny is dropping with him he seems more energised following the appointment. I am starting to think he was going to be told there is nothing to be done he even offered to wash up!

Pam x

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