Liver transplant : will my partner be... - British Liver Trust

British Liver Trust

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Liver transplant

Shell2202 profile image

will my partner be considered if is he is still drinking but cutting down and attending regular meetings to eventually get the detox in the community. His condition is worsening. He’s had several bouts of HE and can no longer work.

Also does anyone else suffer with insomnia although his docs have give him miztazipine and anti histamines he still cannot sleep this is making things much harder for him he is really depressed at the minute and it’s hard

I’m really struggling I have two children and things just seem to be getting worse day by day. I don’t know how much longer he ll be around if he dosnt get a transplant

30 Replies

I am so sorry you are going through this, my understanding is that you have to have completely stopped drinking and be fully engaging with the hospital and attending all appointments. My partner stopped on the 22.12.21 and his consultant has said that if his condition doesnt improve by the end of the year they will start transplant conversations. Is your husband being seen in hospital. Does he have a diagnosis? I hope you are also getting some support.

Shell2202 profile image
Shell2202 in reply to Rshc

Thank you for your message yes he was diagnosed last April with decomposed liver disease since then last may he went to a private rehab stopped drinking for two month then relapsed carried in drinking u till now. and has been going to these groups for 6 week now gradually cutting down and will get a detox hopefully soon. He is seen by the gastro team rarely I have some support off family but I don’t like putting on people it’s just a horrible situation and now he can’t work he’s becoming more depressed it’s just a viscous circle. He is up all night cannot sleep and looks bad

I hope your husband gets the transplant. That’s really good that he has given up. Does he have symptoms is it getting worse x

Rshc profile image
Rshc in reply to Shell2202

My partner also decompensated - they hoped at the time he would re compensate but so far although bloods have improved he still is getting edema and fluid on stomach. He gave up alcohol in hospital when diagnosed as went through a medical detox, I would imagine it is very hard to give up in the real world on your own. We spoke to his consultant this week about what evidence of being alcohol free he would need for transplant listing (if needed) and he was told that the old days of having to go to AA are gone - you do need to prove that you are committed to a life time of not drinking and this can be done via the consultant agreeing you have remained drink free. He told us that previously you might get someone turn up at your door for a spot blood test to check if you had been drinking. I wish I could tell you differently but there is obviously only so many livers to go around and they will transplant into the person that is most likely to have a successful outcome.

Sad to sayName will not even go on the availability list if they are still drinking booze.

It has to be a complete commitment to a life long abstinence, no ifs, no buts.

Not sure about spot tests but I would say it would and should be very likely.

If your husband stops drinking , gets a positive attitude

Eats healthy, exercisers , drinks lots of water, cuts out salt, stops drinking booze and or smoking

He may not need a transplant , just slowly repair his own, but will take time and will power. Many have reversed end stage back to fatty liver, it can be done.

Transplants also come with a whole host of other issues, so is a last desperate hope.

Whatever dont give up hope, be as positive as possible. Depression increases cortisol , bad for liver.

He must stop drinking as soon as possible.

Think of it this way, two sick people, your husband and another person roughly the same paraments (age, etc). One is still drinking or quit a month ago..the other has not been drinking for six months or a year or two. Which one gets the surgery done?

Of course most would agree the one liver should go to the person not continuing to drink. I don't intend to be mean, but I am giving you the strongest warning possible hoping it will work. People have recovered and a liver transplant can be done and the best news is many symptoms will get better after a few days of not drinking, so there is that too.

Good luck and God Bless.

I thought a minimum of six months sober was the rule.

Rshc profile image
Rshc in reply to PipM82

Someone on here sent a link to me with some new criteria that states 3 months in some circumstances. My partner is almost 5 months drink free and we are just starting to discuss the possibility of discussing transplant with consultant

Lils2019 profile image
Lils2019 in reply to PipM82

The minimum 6 months was true in my husbands case but his consultant would not refer until he had been 12 months alcohol free as he wanted to see what his baseline was, and if there was any chance of his liver repairing itself.

Rshc profile image
Rshc in reply to Lils2019

can I ask what the outcome was? I was desperately hoping for partners liver to recompensate but so far no luck. He has been told that if by end of the year no improvement they will probably be talking about a transplant

Lils2019 profile image
Lils2019 in reply to Rshc

He was referred to the QE at Birmingham, and was assessed for transplant.Sadly he was not added to the list because he’s too unwell, and has other underlying health issues.

Rshc profile image
Rshc in reply to Lils2019

I'm so sorry to hear that

If alcohol is the cause of the failing liver, then no he will not even be considered for the transplant list while he is still drinking. He has to be sober for a minimum of 6 months and prove assurance he will NEVER drink again after transplant. He has to be comitted to lifetime sobriety. People have to die for these organs to become available so the least a recipient can do is show respect for the family of the donor and these precious gifts, after being given a 2nd shot at life.

Hello Shell

This reply is most likely going to sound cold. But in the cold light of day, there really is just two questions to ask.

The choice is a simple one and is between Life or Death. There are no in-betweens. Most people who experience a alcohol-induced variceal bleed, or end up having ascites, use these conditions as being their “wakeup call”. It’s a sort of reality check moment.

If he decides that stopping drinking forever is a too bigger ask, and he’s not prepared to commit to a life of celibacy. A liver transplant wouldn’t even be considered.

He would need to have stopped drinking completely for at least six months before he would be offered the chance of being considered to go on the liver transplant waiting list.

Even if he was considered, he will still need to prove he is worthy of a second chance at life. He will be invited to attend an assessment panel. And undergo two days of physical and mental tests and assessments.

The assessment panel are the ones who will decide if a person is going to make a viable recipient. What I mean by this is that he will be respectful of the donor who will be saving his life, and of all the money, skills and expertise of everyone involved. Not only just the liver transplant team, but for all the aftercare for many years afterwards.

This panel will make their decision as to whether a person is going to be a worthy patient. The final decision is made by everyone on the panel, so no single person is responsible.

The panel is made up of several different people all with their own set of skills and expertise. These will include surgeons, anaesthetists, and a psychiatric nurse or doctor.

The psychiatric nurse or doctor will need to be convinced that a person's alcohol days are now behind them and that they have no intention of ever relapsing. This person will also want to make sure that there isn’t a history of suicide and if there is, that this is not going to be a problem in the future.

After all this, and the person will have undergone a series of physical examinations and breathing tests, the final decision will be made in a few days. If it is agreed that the person is a worthy candidate, they may be asked to sign a contract agreeing never to drink alcohol again.

This contract is to prevent a person from ever drinking again. If they were to start drinking alcohol, and at some point develop a liver-related problem, any further medical treatment could be denied, as the person is in breach of contract.

So, going back to the beginning. This is a wake-up call for all, as you need to know where you stand in all this too. So, your partner has to make some life-changing decisions. This can be hard on other members of the family as it isn’t fair the expect young children to be around and watch someone’s health and life deteriorate.

If he decides he wants to live, and that he wants to fight and turn his life around, then stand by and support him. It’s a long road. But it can be done, as many on this site will testify. If on the other hand, he’s not even prepared to change, then it might be time to walk away, for the sake of the children if nothing else.

Finally, children who may be mixed up in all this should know that there is help and support for them out there, and that they too have a voice in all this. NACOA (National Association for Children of Alcoholics) has a hotline as is there to offer help and support: nacoa.org.uk/?gclid=Cj0KCQj...

Once again, I’m sorry if I appear somewhat cold, but this really is a reality check time for not only your partner but also for yourself too.

I hope he can use this wake-up call to become positive about his future life.

Good Luck to you all.

Richard

Others are spot on....he has to stop drinking. No ifs, no cutting back, just stop. He will need to be medically supervised to do so, so a GP visit is important. Then he must remain abstinent forever. Actually he may find that easier than cutting back. It’s a clear black and white rule where there’s no room for uncertainty. No ‘well I only had one yesterday....so can have 3 today’, or ‘I’ll have four today and not have any tomorrow (only tomorrow is a tough day so I’ll just have one or two to cheer myself up!) He simply doesn’t drink and doesn’t forever. He may find his health improves to such an extent that he doesn’t need a transplant. One things for sure though....he won’t get a pop at one if he doesn’t stop. It’s just too much of a risk to transplant a healthy liver into someone who is still dependent on alcohol. That healthy liver won’t be healthy for long. Sorry to be blunt...but having had a problem with alcohol myself and very fortunately for me, improved a lot once I stopped drinking....I know the mind games alcohol plays.

Thank you all for your honesty and kind words I did think it was 6 month before they will even refer him. It’s such a difficult time. I just hope he can carry on with the groups and get the detox and stay sober before it’s too late.

He’s deteriorating day by day

Clinically speaking the LAST thing he wants is a liver transplant. The procedure is used as an alternative to dying and with the shortage of organs there are people for whom it's the difference between life and death.

Right now for your husband there is no safe level of drinking. His drinking is the difference between life and death and every drink makes it worse.

He needs to stop now and see how much recovery or stabilisation will occur. Hopefully enough to prevent the need for an imminent liver transplant and perhaps even enough to eventually revert back to a compensated state.

I can understand you asking and you should ask his clinicians but I can't see any situation in which they'll deny others who who are in that life/death situation waiting for a transplant an available organ to transplant into someone who won't/can't stop drinking.

I'm very sorry for your situation. Will keep everything crossed for you. It's very important you get support for yourself as well while you're dealing with this horrible situation.

Thank you MisterX addiction is a hard thing to beat and he’s like a broken man he feels guilty for the the stress it’s causing but I know it’s only him that can do this. There’s nothing more anyone else can do. This addiction has lost him his health his job and nearly his family. My son whose 15 won’t speak to him.

He is only 39. I just hope he does this and soon because I don’t think he will have long if not and I can’t carry On living like this if he dosnt stop x

I truly hope he can beat this and l understand how difficult it is living with an addict with the most awful disease and symptoms it causes. My husband was the same, only managed to give up drinking 3 months before it killed him. His last 10 days in ICU were horrendous and the death is neither pain free or dignified. He was just 54.I just hope your husband sees the light before his life is ended in the same sorry way.Good luck to you all.

Laura x

Having read all the above I'm sure all this must be overwhelming for yourself and your family, there really isn't nothing more to add only your Partner can make the choice to abstain or not. Please remember you in all of this and have some you time, my heart truly goes out to you, sending virtual hugs and strength to you. Take care xx

Thank you tia and positive for your kind words it’s really helping me speaking to people who ve been through this / are going through this it’s so frustrating tiring and worrying xx

Rshc profile image
Rshc in reply to Shell2202

you are absolutely not alone. So many of us are in similar situations. I really hope your husband manages to get the help he needs. For my partner, the shock of being so poorly at Christmas (he absolutely could have died) and going through the detox in hospital was what he needed. He is like a different person now. I am so sad to think of all that wasted time and the damage he has done to himself through drinking

You normally have to be totally off the booze for 6 months before you can go on the transport list. Hope this helps.

Thanks rshc I can’t imagine how scary that must have been glad to hear he’s ok now. 😊Do they do detox in hospital? We were told they only do this in the community where we are in West Yorkshire. it’s a lengthy process x

It sounds like he needs to detox sooner rather than later, have you spoken to the alcohol services in your area? Or just GP?

Hi yes he’s attending meetings twice a week at the moment but it’s early days not sure how many he has to do before hey do the detox x

Roy1955 profile image
Roy1955 in reply to Shell2202

If his Dr tells the "group" (is it CGL) that detox is urgent they will bring it forward.It's not a miracle cure though.

He needs to want to be sober

Quitings the easy part, staying quit is a bugger.

In addition to the many helpful replies from our members, you may want to look at the support and information we offer (including our virtual support groups, which are for for family members too): britishlivertrust.org.uk/in...

Best wishes

British Liver Trust

Does your husband have cirrhosis? I'm just curious as I wondered if Mirtazipine is safe for the liver?

I hope so because his doctors have prescribed it as well as antihistamines as a sleep aid He was previously on trazadone but changed to help his appetite x

Tia2021 profile image
Tia2021 in reply to Shell2202

I have Mitrazapine my Liver consultant said it was ok to remain on it as I don't sleep well, I have cirrhosis, it does help a little. xx

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