British Liver Trust
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Father dying of liver disease conflicting medical advice

Hi

My dad has advanced liver disease and today we have been told it's end of life care. He is really confused and has lost so much weight. I'm confused as we went to see someone about a liver transplant and they said they would try an ng tube to build him up and they would maybe reconsider giving him a transplant, but his Dr's are saying after trying the ng tube only 4 times in which in his confused state he pulled out. it's not worth it and he won't build up to the strength to survive a transplant and if he did there are other medical issues,bur not sure what they are. The dietian said she thinks they could build him up and was a bit unsure why they are making the decision she has only seen dad for 15' minutes though and the consultant on the ward has seen him over time and watched him deteriorate in recent months. I'm just so confused as to whether I should continue to fight or let my dad go. He is very frail and I can see he has deteriorated but he's my dad and I want to give him the best chance.

I'm also suffering with anger too as he ignored a lot of warnings and we are now here. I know alcoholism is an illness and all that but when your the one watching someone do this to themselves it's so hard.

Wondered if anyone has had any experience or advice they could offer me.

Thank you

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Hi as I have been through it all and have now had a transplant, my father in law got diagnosed with cirrhosis about 3 months ago and he has also been informed that nothing can be done, they advised him to stop drinking which he has done to give him extra time. Reason they not transplanting is his age and also other health conditions, they don't think he would even survive the anaesthetic. It's been so hard for my husband to accept but he also understands

Like he himself said if he was offered a transplant and someone of my age (40) needed one he would feel immense guilt it being wasted on him when he has had as he said "good innings".

And as much as I respect the dieticians they are not experts in liver disease. They told me over and over again they could get my weight up but I lost more and more I didn't want to eat.

Anyway if you feel it's right to fight then do so, but also just be realistic and do think about age, health conditions etc. But also importantly ask him what he would like you to do.

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Thank you for responding. My dad is only 67 so he has hopefully a lot longer he hasn't drank for a year now. The liver specialist also advised to build him up but they only see him for 15 mins don't they. Dad is just so confused that I can't really ask him. He will have some moments of normality so I think if he's having one of those today I'm going to ask him. It's such a horrible thing and as someone that begged him all his lift to stop and calm down.. It's such a mixture of emotions sadness fur what he's done to himself and anger that he won't see my little boy grow up.

I will also speak to the nurses today.

Thank you again

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No problem and I do understand your frustration over him not stopping beforehand but if any of us knew what was to come we probably wouldn't live.

Don't beat yourself up over it as it wasn't your choice but don't dwell on him not stopping sooner either.

Enjoy his lucid moments and fight along with him, he a lucky man to have such wonderful support x

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Hi

My dad passed from cancer caused by asbestos and we had to face him wasting away before our eyes.

I spoke to his doctors and nurses and more importantly to the counsellor they recommended who helped make some small amount of sense of it all.

The most important thing she told me was to see the situation as one that millions say they would have loved ... bear with me

We had the chance to be sure that we got to say everything to him that we wanted to. We got to say goodbye in a way that we could cherish.

Hold on to things like this. Ask your questions to be able to make an informed decision on your dad's treatment. Save the fight against the anger for later and find a way to use it.

In the meantime we are here for you and if someone here isn't the patient they are, like you, a loved one. There will always be someone who understands.

Rita xx

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I don't no if I told u before but my dad called a stoke on the isle of grain to get the men protective clothing for asbestos it was a big thing my dad helped more like called all out it was on TVs ect I'm proud as they got the men bit late for some , but he lost his life 61 heart attack miss him every day.

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Weird

My dad died of an asbestos caused disease.

He had petitioned for his works to remove asbestos and they put him in charge of clearing it. The workers who physically did the job had full protective clothing etc but not dad. Also too late for a lot of the workers at the time but saving all future employees.

He was 59 when he passed.

Rita

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Weird bit I did not understand oh yes I ment strike for the men to have the clothing me dad also got the Royal humane award for jumping in the Thames with two work mates saved the life's of two children when a boat overturned sadly there dad drown I'm so society about your dad

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Hi,

Welcome to the forum.

This must be a very difficult and upsetting time for you.

If you would like to have a chat then please call the BLT helpline on 0800 652 7330 it is open 10am to 2.30 pm Monday to Friday.

Best wishes,

BLT Admin

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I been trying to call but can't get answer . Thanks I'm in a right staff mind body I don't no what to do anymore I can't live like this and no one.

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Hi,

The helpline has been very busy today and only one person answers the calls. Please do keep trying,

Best wishes,

BLT

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Thank you it's tough I've had the chat with my dad and is isn't happy the hospital is not letting him see the guy about the transplant and won't let him at least try. He seems to have really picked up, and I told him they will poke and prod you more and he was like but I don't have a choice if it helps do I.

I'm really confused now as there may b a small chance and I appreciate it's a small chance.. But if he wants to fight I should help him shouldn't I?

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Hiya Potter, that's a million dollar question really and hard to answer as everyone's different, could you ask him what he would like you to do? It's also about how you feel obviously and what you're comfortable with in my humble opinion...my heart goes out to you as no one wants to see their parent so poorly whatever the reason or cause..

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Yes you should if he fighting x

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I asked him today as he asked me if he had his appointment I didn't want to lie and said that the hospital don't think he's well enough and are looking at not treating him. He said we'll I want to see the other guy cause I want to try. I said they may poke and prod you and he said I don't care I've got to try wouldn't you want to.

I've spoke to his partner about this conversation and she is just saying let's just get him home and hasn't even the balls to tell him the decisions that are being made around.

I just feel so stuck and like I'm working against a ticking bomb.

Which I am

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Well my view is that,as he can clearly state his needs and desires, then they should be respected and followed where possible but that's just me.

I think I read he has been sober for a year? That says a lot, it says a part of him didn't want to be that way... try and hold onto that.

It's great that you are there to support him, I can't quite figure why his partner wouldn't tell him but perhaps she can't face the potential prognosis?

If you are able to speak with consultants on his behalf great if not he may have to give consent or enquire himself. It is hard, as sometimes consultants can override families views or wishes regardless but with the best intentions for the patient obviously but don't fear them, they are only human.

Take good care of yourself

Michelle xxxx

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Hi

You are in my thoughts and prayers, fight with him. Take care. Lots of love Lynne xxxx

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So after being utterly disgusted by the hospital I've decided to go private. I asked that they discuss things with my dad as he has capacity and should be consulted. They basically TOLD him they couldn't do anything and that was it. Never asked what his thoughts were or anything, the place isn't even a spealised liver unit. So he's now at home, with carers coming in but that's it no nurses to check he's comfortable just been told we need to call the gp if he looks that way. Surely he should have some nurses or something it's madness.

So I've decided to take him to a liver specialist as dad has asked for that and all the people he's been under before are just gastric people.. Which is just crap too. I wish I would've done things sooner but a lot if this was kept from me and dad was happy to go along with what he was being told.

His partner isn't convinced I take him anywhere else but my view is if he wants to exhaust all options why not. If he's too weak I obviously won't take him to the appointment. It's just seems so wrong that when Dr's were saying don't drink she didn't listen and now they are saying he's got no chance she's going along with it.

Sorry long rant

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Sad to hear about your story. My relative was also passed from pillar to post by gastroeneterologists who missed the signs although raised LFTs ignored this saying seen worse in cirrhosis. In the end after considerable weight loss cirrhosis identified after seeing hepatologist but it was too late to do anything. I really pressed for at least a review by transplant team although chance very slim given all the factors, and it did get rejected but consultant there did take bloods + diagnosed cause of cirrhosis as none had been identified (never drank alcohol) .

Have managed to stabilise weight loss by diet -really staying on top of this and ensuring plenty of nutrition especially protein in drink supplements and snacks throughout the day. Get a good nutritional assessment and stick to it....regular snacking all day, don't go without for more than 4 hours...anything he's willing to eat but ensure protein in there.

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I'm so sorry to read your posts. as someone going thru same thing with my mum I can really sympathise. After many years of illness and abnormal bloods my mum was finally diagnosed with NAFLD and cirhossis last August. It has been an emotional roller coaster for our family. We also told by liver consultant mum was too ill and frail for treatment and maybe would have 2 years to live. since January we have been told 4 times she didn't have long to live. she spent 2 months in hospice and is now in long term palliative care facility. her medical needs were just too much for her and for us to keep her at home. she is a remarkable women and fights on but she is fading in front of our eyes. It is soul destroying. I agree that too many of the medical profession don't know enough. what I can say once on the palliative care register the support is fantastic. good luck and wish you well.

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