Done?: So i've written a few posts and... - British Liver Trust

British Liver Trust

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Done?

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So i've written a few posts and now we've come to a closing chapter unless God performs a miracle. As i sit at work its hard for me to comprehend the past 2 months let alone years. My husband with stage 4 liver disease has been hospitalized at least 20x the past 2 months with ascites or major pain or another. He's been in the hospital going on 3 weeks now. He's had what doctor said a major kick to the kidneys this time. They have him on another type of antibiotic or did as the first ones weren't helping. He's got HE. So doctor said he wasn't going to make it very far with his kidneys acting up now. So today we decided to stop all treatments and let my husband's disease take his life. He was on machines to keep him alive and that's all that was helping. He never did want to be kept alive with any machine. They've removed even the catheter. My husband knows all about this..the other option was to take him home give him the required meds which he never stays on, then a week later he's suffering so much we'd both wish it was his time so rather than go through all that AGAIN we decided to start it at the hospital. Yesterday we went outside and he "felt the grass for the last time". We cried and last thing he said last night was who he wanted to do his service. Today I could not go in. I was there every single day even though we live an hour outside of the city. I was to exhausted and had to work yet. But it really took its toll on me. So as i sit here and type this I imagine his body is starting to wither away but will be with him in an hour or so. We will talk about life and death and we'll see what happens. I told the doctor I would take him home the last couple days of his life. How fast or slow I have no idea. Sounds morbid but had i not read any of the posts on here I would have felt so alone. So I post these in hopes it will let others know their not alone. I seriously don't wish this upon anyone. Watching someone go through stage 4 liver disease is not as clear cut as one thinks, its a hell of a rollercoaster ride. I don't want any "what if's after this..I already had enough. I just keep remembering the pain and suffering he goes through and I know it's the right thing. He's even mentioned taking his own life numerous times he was in so much pain and suffering but as Christians we don't go there. If anyone had to make a decision like this please let me know!!

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26 Replies
Kimlescam profile image
Kimlescam

Good Morning

I have never had to face what you are going through. My husband had end stage liver disease and had rejected a transplant.

My son and I convinced him to have one and he just made it in time.

I too felt alone at times and this site was a great help.

I hope you and your husband find peace and will be thinking of you.

You are both in my prayers.

Kim xxx

Poobear69 profile image
Poobear69 in reply toKimlescam

Such lovely words and reply.Hope you and your family are all well.

I am very sad to hear that you are in this awful situation. Be assured that this community wishes you all the strength, courage and love to face this difficult time in your lives. We are thinking of you.

My heart goes out to you both. I was where you are just over 8 years ago. My husband had liver and kidney failure and bronco pneumonia and was in ICU for the last 10 days of his life. He could tell months earlier he was going to die. The medical team were incredible and did everything they could for him but as his condition deteriorated they suggested to me that the kindest thing they could do would be to top up his dire morphine and let him go. I sat beside him holding his hand as his heart beat weakened til it stopped and he took his last breath. Although it was the hardest thing I've ever had to do, being there with him was best for us both.

I'm pleased for you that you have a faith which is helping you through such a difficult time and that your strength will carry you into a positive future and new chapter in your life when the time is right.

Laura x

in reply to

I am sorry to hear of your loss? I am glad you have someone near you as its hard to be alone with this situation. Can you share with me how did your husband progress from liver failure to kidney failure to pneumonia?

in reply to

Basically the alcohol destroyed his liver then while he was in the high dependancy unit his kidneys packed up so was transferred to ICU for dialysis, his lungs had been weakened for a several weeks which then became pneumonia. Alcohol is f****** poison it destroys major organs it destroys minds it kills and devastates families !! Why is it even legal !?

Porphyriamaniac profile image
Porphyriamaniac

I'm so sorry for what you are going through. I can't offer any advice but sending lots of love. Xxxxx

Identity75 profile image
Identity75

My heart goes out to you and your family. X

Hi.3 1/2 years ago, my mum had beaten cancer by a week when she was admitted to hosp.she spent the last 30 days in there with various health problems.in the last few days she got pnuemonia and we were asked if we wanted to keep her alive on meds and a machine , see how she goes.there was never going to be a happy ending for my mum,so we took the decision to let nature take its course.its an awful situation to be in and even worse to have to make that decision.mum was more than aware of what had been decided and she agreed it was for the best.no way on this earth,would she of wished to be kept alive on a machine.one by one, the feeding tubes were stopped and then removed.catheter and then the varios drips and canulas.it was all about dignity and privacy.dia-morphine for the last few hours until eventually she passed away.

My heart goes out to you and your husband and family at this very difficult time. Xx

Kristian profile image
Kristian

Thank you for posting.

My thoughts are with you and god bless.

Kristian

Smyally profile image
Smyally

So sorry for what you are going through. This is a wicked disease. My love and thoughts are with you x

Marydel63 profile image
Marydel63

It is probably the hardest thing for the two of you to do. The most important thing is knowing you are there for him. He for you. Those positive memories such as feeling the grass for the last time will give you comfort in the future. As the smell of the ocean gives me comfort thinking of the last time I took my mother to the beach , not even strong enough to walk. Having the chance to say goodbye, everyday that he is here is another chance at knowing you are there for him. I am praying for you both. It will be the hardest thing you do , but he will be at peace.

God Bless

Mary

Isabelle2 profile image
Isabelle2

I am so desperately sorry for you both. Like others I had to make a similar decision for my very very old mum, but it must terrible when it’s your husband, lover, soul mate. I hope that your last few moments together, however short or long, will be full of love and tenderness.

Isabelle xx

Ok so my my husband was transferred back to our town hospital..we didnt have a good visit today as everything we talked about caused conflict or made him angry. I seriously don't know if it's HE or what last thing he told me was fuck off, get out of my house/our house,both our names but he bought it. Anyway he said we're done, i'm done with you. So i left him at the city hospital. Now back in home hospital the doctor wants to start him back on Lactulose so i said yes if it helps his HE yes. He was very aggressive and had violent tendencies towards the nursing staff before so the doctor also said should he be like that he has no option but to sedate him and send him to long term care. He hasn't called me and i haven't called him. I figure he needs to get it together first. Where and when he's dying now I have no clue. But the rollercoaster con't. I do fear for my safety is all I know. I do pray for long term care, I seriously don't know how much more i can take!

in reply to

This is the encephalopathy talking, not the real him although that does not make it any easier to bear. Have you had chance to properly speak to the medical team about their plan for him/prognosis. You need some support too - you could try calling the an - anon helpline 0207 403 0888 - it is for the relatives/carers of those who have alcohol misuse problems. There is our helpline too - 0800 652 7330

regards

I felt so much sadness reading your post and thank God for sites like this with people who understand what you’re going through and how you are feeling.

I’m pleased that you and your husband have both had the chance to talk together properly because that is so important , I had that chance with my father and although it is heartbreaking I think it is also a blessing .

God bless you both and help you through this difficult time. Please keep writing because I’m positive that lots of people on here will be able to relate and bring you comfort.

Elaine xx

GrannyDoll61 profile image
GrannyDoll61

Heartbreaking time for you.Hope the lactulose brings your real husband back if only for a wee while.You matter too and don't loose touch of that. Love and hugs xxx

catrinamakes profile image
catrinamakes

My heart goes out to you both. I'm so sorry to hear this , I hve been in a similar situation been in hospital told me my organs were failing , I asked them is this it and they said so yes ,we can do know more , they expected me to die within the week . Fortunately I made it through, but the 5 months I was in hospital I was horrible to my husband at times, when I look back I was angry with myself, but took it out on him and the waking nightmare we're so real and very scary. I hope you get some support for your self and that you can spend that precious time together. We are all thinking of you , please keep in touch , as you need the strength of support.

Thinking of you both

Catrina

Hubbie2 profile image
Hubbie2

I have been there it's a horrible disease. My husband was in and out hospital we all agreed when he got to the time he had had enough to stop all treatments and let him go. This happened on the 7th of Feb. They tried giving him treatment but it was obvious nothing was working so I asked the doctors to stop and they agreed. That was about half 3 and he died peacefully at 9 o'clock that night. My thoughts and prayers are with you and I'm so sorry you and it husband have to go through this. Xx

in reply toHubbie2

Did they even stop Lactulose if he was on it?

Poobear69 profile image
Poobear69

I’m not religious but my journey to date has been blessed. Miracles do happen. Me typing this to you today is a miracle. Prepare yourselves yes, do not give up the fight though until the winner of the battle is revealed. All during my my journey to where I am now was coloured by a real sense of calm and somewhat “heavenly”. I donned a suit of armour as a soldier does going to battle. I won this battle but I know there may be many more. I will not negotiate with this disease. I will stand tall and fight in. Your post has sincerely touched me and I wish you both the very best. Please “don your suits of armour” and go to battle. You both sound exce

Kingsleybones profile image
Kingsleybones

Bless you both. I will be thinking of you.

Poobear69 profile image
Poobear69

Wonderful undiduals. Good luck,

sunnysmile profile image
sunnysmile

Oh my goodness. I am speechless and feel helpless for you. Emotion is running way up there. I don't know enough about HE but enough to know it changes the person in a big way. You must be distraught. You also must be of strong character to be dealing with this and will remain so and will in time look back on the good memories of old.

Please take care in the final journey and I pray for a peaceful slide to a higher realm where you both will find comfort.

My best to you both.

Gwen x

So I gave my husband a day to cool off, I couldn't wait any longer to see him. I sat in his room as he slept. He woke up with help from the nurse, turned and saw me sitting there. He started crying and said he was so sad. He said he went from wanting to kill me (for what i have no idea) to standing himself on the highway and wanting to get hit by a truck. We visited and cried for a bit. I left, only to see a fragile, weak and lifeless looking man. Doctor is keeping him for observation and just giving him Lactulose and other meds I have yet to find out. He's been pooping black greenish looking feces. What the next few days days hold I don't know. I feel so sorry for him. I wish he could come to some kind of acceptance of his health situation. I know it's easier said than done. I've watched and sat with 3 other family members as they passed away so for me it wouldn't be too hard, I don't know and I won't know until it happens. I just pray he would develop something that takes his mind as to know you've only got so much life must be so HARD. I can't imagine. I look forward to your replies and posts. Thank you all!

Andiball profile image
Andiball

Ur in my thoughts and prayers xx

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