End stage cirrhosis. ..is there hope? - British Liver Trust

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End stage cirrhosis. ..is there hope?

Kimbosabi profile image
15 Replies

Hi all I'm from Wales and my mum is currently in hospital very ill with complications of cirrhosis. This is the worst I've seen her. She was taken in 10 days ago with a heart rate of 180, sodium was 120, couldn't walk, was vomiting, not eating, jaundiced and basically looked awful. Her meld score was 26. I kno that's bad. I kno her outlook isn't good. If they stopped all medication I'm sure she would die. She has swollen varices but no bleeding. Acites that they can't treat yet due to her fast heart. She's still not much better. Her sodium and potassium has gone up but she's dehydrated and her kidneys are having trouble now. She's on 2 meds for her heart. She's breathless, still can't walk unaided or even lift her legs onto the bed. I'm scared for her as I think this is the end. She's usually better after a few days in hospital . This time is different. She's now got sickness and diareah again. Is there hope for her or should I be preparing for the worst?

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Kimbosabi
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15 Replies
Kristian profile image
Kristian

Hi there, have they checked for Sepsis?

I appreciate that there are many things that may overlap, particular with liver disease, but some of those things you describe flag up that possibility. I don't want to worry you unnecessarily and I would expect that the hospital will have already considered that. However, please do ask the question to be on the safe side and do so quickly. I am sure they will not mind in the slightest you asking.

Sepsis is very serious but can be treated, but the outcome very much depends on doing that quickly. It is still life threatening even with treatment, so hopefully it will be something else.

Is there hope? There's always hope, and that's sometimes all we have to cling to. Please keep doing so. It wont be a magic cure, but until there is no other outcome its the best thing we have. This time last year i was in a similar situation to your mum and i'm here writing this response to you. There are no guarantees though and i truly hope the outcome is positive for you both.

Kimbosabi profile image
Kimbosabi in reply to Kristian

Thank you Kristian. I did ask two days ago about that as my mum was telling her sister she had poison in the blood. The nurses reassured me she hasn't. They were on about toxins and how they were trying to rid her body of it. My mum is quite confused but I have spoken to her firmly about what is going on with her body. Without all the medical words. I'm quite up on this stuff. She seems sad this time and I don't think she wants to die. In June she refused point blank to stop drinking. I think she knows this time is different herself.

Kristian profile image
Kristian in reply to Kimbosabi

I must admit it does sound pretty serious. I therefore send you all my best wishes in the hope of a positive outcome.

LAJ123 profile image
LAJ123

Kimbosabi,

You do well to listen to Kristian as he has been through the very worst and survived.

In my case from diagnosis of cirrhosis at age 62, to my transplant was just 14 months.

At my worst I had spontaneous bacterial peritonitis, which is when the fluid (ascites) in the abdominal cavity becomes infected. My peritonitis resulted in near fatal sepsis. I was unable to walk or feed myself. During 2015 I endured a total of 80 days hospitalised, mostly with hepatic encephalopathy. This is when the toxins not removed by the liver, circulate through the brain causing confusion.

It is important that you understand that I was able to recover from a seemingly impossible situation to become well enough to be listed for a liver transplant.

I had my extremely successful transplant in March 2016.

As my liver disease was alcohol related, without total abstinence from alcohol none of this could have been possible. Until a proven 6 months alcohol free, nobody will be considered for transplant.

In January my sister was planning to come over from Australia to attend my funeral. Instead she was able to be at my wedding in August.

The message is - don't ever give up hope.

Wishing you well.

Jim

Kimbosabi profile image
Kimbosabi in reply to LAJ123

Fantastic news Jim. .well done to you, you should be very proud of yourself.

Well I seen my mum yesterday, her ascites is getting worse and her ankles are swollen. She struggled to sit up but once she did she didn't stop talking. She was telling me lots of things from her past she's never spoken of. I tried to leave a few times but she wanted me to stay so i did. I thought she seemed loads better.

Today my aunt visited and said she could hardly make out anything she was saying. She's alao been hiding food that she's supposed to be eating. It's like one step forward and two steps back

LAJ123 profile image
LAJ123 in reply to Kimbosabi

If it helps - I believed the queens name was Margaret and spent time looking under the bed and sheets for a white imaginary object. It was too much effort to sit out of bed in the chair.

It really seemed hopeless to all who knew me. The staff told them to expect the worst.

Last August I won a medal playing table tennis in the British Transplant Games as well as getting married.

I'm pleased you think you can see an improvement. Try to make sure that she is eating, getting fluids, taking her medication and moving as much as possible.

Wishing you all well.

Jim

Kimbosabi profile image
Kimbosabi

Jim was you quite well coming home from hospital? They are on about letting my mum home on the weekend but she's still full of acites and very ill. She can't even lift herself up from a lying position! I'm sure they are sending her home to die as she's not improving from what they have done so far

in reply to Kimbosabi

Hi

I'm thinking of you and hope your Mum starts to improve. Please take care. Lots of love Lynne xxxx

Kimbosabi profile image
Kimbosabi in reply to

Thank you Lynn. I've spoken to the doctors and it's really what I thought. She's not going to get better, there's nothing more they can do. She will be coming home soon with meds to keep her stable but how long for I don't kno.

She lost her brother today too of copd, she used to be very close to him but they fell out a while back. I'm not sure she even understands that he is gone forever😢he was also an alcoholic but that never took him in the end. It's been a sad day.x

in reply to Kimbosabi

I'm thinking of you all. You are all in my thoughts and prayers. Xx

Kimbosabi profile image
Kimbosabi

My mum passed away on Sunday the 14th of January 😢😢x

in reply to Kimbosabi

So sorry to hear that, it must be terrible losing your mum and uncle within 2 weeks of each other.

My thoughts are with you at this difficult time. Be strong, Klodian x

Kimbosabi profile image
Kimbosabi

Thank you klodian. Yes very difficult. I realise I hadn't updated this thread before she died. The day after my uncle passed she was very positive, walking around on the zimmaframe frame and talking to elderly patients. She said she wasn't drinking ever again. Then the day after she started bleeding from her backside. Yes it was ruptured varices. She was taken to theatre 2 days later and they were banded. She went downhill from there. She wasn't eating, not drinking much and stopped getting off the bed. It was impossible for her to move her own legs. From the following Monday her breathing was very bad and she struggled to talk. Then she just seemed to sleep more and more. Then the pain started. What an awful way to watch someone you love die. That was the first time I'd ever seen my mother want to live. And it was too late😢😢

Kristian profile image
Kristian in reply to Kimbosabi

Really sorry to hear that. Sending you all my best wishes.

davidp1 profile image
davidp1

Very sorry for your lose... It even upset me. They should print this post on the F***ing alcohol bottles just like they put warnings and photos on the f***ing cigarettes boxes. How many more lifes those things will claim :(

Sorry just had to release it...

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