Does anyone have experience with Cirrh... - British Liver Trust

British Liver Trust

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Does anyone have experience with Cirrhosis?

Jimbo32
Jimbo32

Good morning, hopefully someone can help me out.

My Dad has recently been diagnosed with decompensated cirrhosis of the liver. He’s 70 years old and a lifelong drinker and smoker. He has all the symptoms of late stage alcoholic liver disease (Jaundice, ascites, loss of appetite etc) but also appears very tired and his concentration isn't great either. He can’t walk more than 25 meters or so and it’s getting harder to hold a conversation, he’s also eating almost nothing and the weight is dropping off quickly. These are all recent developments within the last month or so and very out of character. He looks very sick.

My questions are, assuming he stays away from alcohol

Is this condition likely to improve? If not, how long can he survive? Are we talking days or years? How can I get him to eat something? What’s the best way to care for him?

I’ve not got much help from hospital staff or doctors on this and I can see why they're reluctant to speculate as far as life expectancy goes. I imagine its highly personalized anyway but please be as blunt as possible. I know you guys aren’t doctors so anecdotal answers are welcome. I just want to know what to expect.

Thanks, in advance

25 Replies
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Sorry you find yourself in this situation and that Dad is so very poorly. As you rightly say none of us are medics and can only speak from personal experiences or learned knowledge.

Sadly, it would sound like Dad is nearing the brink. If he could remain sober and start eating little and often (protein and carbohydrates) he might rally a little though I wouldn't expect huge miracles. Would your doctors consider prescribing him some supplementary drinks - Ensure or Fortisip? These contain lots of the protein, minerals, calories and things that Dad needs even though he can't manage to eat.

Loss of appetite with alcoholism is common as the drinker gets their calories from the booze rather than food ALSO having ascites is going to squish his other internal organs including the stomach making it uncomfortable or near on impossible to take quantities of food. He probably also has a damaged stomach lining from portal hypertension. Ascites is more than likely pushing his diaphragm upwards thereby squashing his lungs and resulting in his breathing difficulties (there is also a late stage complication called hepato-pulmonary disorder which might be contributing to breathing issues). Confusion and chronic fatigue are also common in end stage liver disease as toxins build up and affect brain function.

He really is very, very poorly which you know but doctors will not be able to put any sort of timescale on how long he can last, it really is an individual situation. Some people on here have practically been on life support through alcohol related liver disease and having gotten sober have rallied others have very sadly passed away even after being sober as the damage was so far advanced. It might be a situation where you have to ask doctors about the end of life care plan and where you go from here.

Look after yourself in all this too, it is probably going to be a fairly harrowing time as you go forward and I am so sorry to be a bearer of sad words. If you've not read it already the BLT has a page about cirrhosis and how it manifests etc. It might give you some additional guidance going forward or at least let you know a bit of what is going on. It's at:- britishlivertrust.org.uk/li...

All the very best to you, do look after yourself.

Katie x

Jimbo32
Jimbo32 in reply to AyrshireK

Thank you Katie, I appreciate your candour. He has Fortisip in the fridge but cant really get it down that well. Ill read the page you sent and cross my fingers.

Thanks again

Well said ,i couldn't add anything more apart from i was in that position, and I'm a lot healthier now with a quality of life and siber for 6 years.

I reach the stage of decompensated liver disease and put on transplant list called 3 times but livers unsuitable,during that time by abstaining from alcohol i stabalised and returned to compensated,on a personnel level the age of your dad it doesn't look to bright and to make him as comfortable as possible in the finale day's.thinking of you.

Jimbo32
Jimbo32 in reply to blue-moon_1

Thanks mate and well done for getting healthy

Hidden
Hidden

Hi

Just to let you know I'm thinking of you, it must be so hard for you. Take care

Sorry to hear about your dad. Have they not suggested he goes on the transplant waiting list?

I was in a similar position last year. My cirrhosis went from compensated to decompensated very quickly. That's when I started developing many symptoms of end stage liver disease (muscle wastage, encelopathy, weight loss, no appetite, jaundice, etc). It took around 4 months from the initial symptoms to the transplant. I feel I could have carried on for several more months but I was so unwell that the thought of being like that for much longer was really affecting me emotionally, not to mention the daily struggles.

I'm also relatively young (33) and my cirrhosis was caused by a long term hepatitis B & D coinfection which must have undoubtedly been made worse by the odd binge drinking in my younger and more recent years.

I wish your dad all the best. It's a horrible situation to be in but I hope he pulls through.

Jimbo32
Jimbo32 in reply to k-dog

Thanks mate, me too! i'v been pushing him to look at transplants but the doc has said not to risk invasive surgery. Not sure if that means they think he's too weak for an op?

Well done on getting your transplant!

AyrshireK
AyrshireK in reply to Jimbo32

I am afraid to say that advanced age is regarded as a contraindication to transplant listing and in some centres 70 (65 in others) is treated as the cut off age unless you were talking a very fit, active and sprightly 70 year as many are in this day and age - when my hubby was assessed there was a 71 year old chap in having an assessment. The patient has to be fit enough to endure the lengthy operation and the gruelling recovery period afterwards - hearts and lungs and other organs need to be in good health. Malnutrition and too low a BMI is also contraindicatory as the patient just wouldn't have enough reserves to get through the procedure etc.

People who have alcohol related liver disease have to have a proven minimum 6 month period of abstinence before they are considered for transplant assessment.

Sorry to say that Dad has probably missed the boat as regards transplant.

Again, sorry to be so negative.

Katie xx

Jimbo32
Jimbo32 in reply to AyrshireK

Hi katie. Yea i kind of suspected that. Having seen him last night he was very weak and im not sure hes well enough for the op. So strange how quickly this all came on.

Hi there, I'm sorry to hear about your dad. I'm in a similar situation. My dad was still working up until a few months ago and now he has been in hospital for almost 5 months on and off. He started off looking a ghastly colour and was very cold and swollen tum. He went to the doc and they told him to wear mits!!! Anyway, he had an infection and this triggered his decompensated liver stage. My dad has only progressively got worse :( they are currently considering the transplant list after assessment but I fear time is running out for him.

My dad takes lactulose and rifaximin to try and eliminate the bacteria build up in his bowel and mop up the ammonia that causes the brain toxicity. He is on profilactive antibiotics to prevent infections building in his ascites. He has to have regular blood checks to check for anaemia and treated with transfusions. A high calorie diet for four dad is a must, try and make sure he is getting enough protein as his muscles will need it to prevent from wasting. It's a struggle I know but fortijuice, fortisip, ensure, scandishake are all things that will

Help build him up. The hardest thing I find to deal with is the hepatic encephalopathy in my dad. :( he gets very confused and is really drowsy and withdrawn now. He asked where I was the other day and I was sat in front of him :(. My dad is 65, he hasn't touched alcohol in 2 years and doesn't smoke however he was both of these :(. It is very difficult but me and my mum are just praying my lovely dad gets on that list and he finds a match very soon. I wish you all the best and get in touch as would be good to chat for support.

Jimbo32
Jimbo32 in reply to Mcmaddy

Sorry to hear about your dad, hepatic encephalopathy must be a nightmare. i understand the struggle getting the food down. Got my dad to eat a few bits of food last night so ill take that as a win.

Hope your dad gets better mate

Hi Jimbo32. My mum was diagnosed with decompensated cirrhosis in November. She's 71 and a life-long alcoholic(she doesn't drink now,of course). She was admitted to hospital and was jaundiced,she had ascites,oedema,her mind seemed as though it was gone and she even had pressure sores through refusing to move out of a chair for 2 days! I was told by the liver specialist that her condition could not be treated. A liver transplant was off the cards as she would not survive it. The specialist advised me on a no resuscitation option as she was so far gone. She was in hospital a month and came home to live with us. She was receiving no treatment and all they were doing were sorting out the pressure sores and keeping her as comfortable as possible. Her ascites did start getting worse at one point and her oedema was so bad that her legs were leaking terribly. She was on spironolactone at first and then the GP changed it to furosemide. Her ascites are now under control, her mind is back to normal. She still has oedema but not nearly as bad. She has two Ensure drinks a day but is eating better than ever. She has no medication apart from the afore mentioned water tablets and daily thiamine. She has no hospital visits - to be honest , I think the hospital sent her home to die. She sees a district nurse once a month but that's just to keep an eye on the pressure sore situation(they've been healed for a long time). To be honest, her recovery is amazing. I know she's not going to get better but she's doing well. Anything is possible so try and keep your spirits up.

Sorry about your mum and great to know shes getting a better quality of life. To be honest if i can get my Dad to that stage where hes up and about and enjoying life, that would be great.

Can i ask if the jaundice faded in her eyes? My dads are still quite yellow.

surveypass
surveypass in reply to Jimbo32

Yes the jaundice has gone. When she went into hospital her skin and eyes were very yellow. She couldn't walk at all in November and came home in December with a walker. She get's round the house fine without any help now. I know your dad isn't eating and my mum wasn't either. But gradually over the last few months her appetite has really picked up. I'm not saying things are great with my mum - she gets very depressed and has trouble sleeping and is ( and has always been) a very difficult person , but physically the changes have been incredible. Hopefully things can improve for your dad. My mum didn't start all this as a healthy person. She's got a long history of alcoholism and depression and has never taken good care of herself. so if my mum can improve like this , maybe your dad can to. Good luck with everything.

That's so great to hear! Honestly just knowing that things CAN get better helps a lot.

All the best to you and your mum

hi firstly I sympathise with the situation your father is in and indeed your whole family. my mum has been in last stage for over a year now and it is such an emotional roller coaster. We are now at our 4th time of being told she is ready to pass but each time she pulls back. Unfortunately she was in hospice for 2 1/2 months from mid April until the end of June. We where told she couldn't come home as her medical needs were too much for us as a family to cope with. my mum is 71 and non smoker or drinker. my father is 75 and it got so hard. she couldn't walk, eat, go to the bathroom. The worst is memory loss and hallucination. she is now in long term palliative care and we have just gone thru another episode were we were told she would pass within a week or two max. We are now in week 3 and last few days she is back up talking eating a small amount and able to go bathroom assisted by 2 people. It is a long hard process. my mum has been so unlucky with her health from the age of 60 and took many years to get this last diagnosis. We did get much info from hospital and just plodded along and dealt with each symptom as it came. It was only when she went on palliative care register that we got support and I have to say the help and advice and support for whole family has been fabulous. best wishes to your father and your family.

I am so sorry you are going through this. I went through this with my father and he did pass. I was his caregiver and it was so hard seeing him like that during his last months. He was sick for years from alcoholism and I'd say it really got bad in June 2016 and he became totally dependent on me not being able to do much for himself. All the symptoms you and everyone else listed he had. Tiredness, weakness, no appetite, horrible mood swings, encephalopathy, ascites, bathroom accidents, falling, low blood pressure, dizziness, bruising on his arms, memory/concentration problems, fine motor skills were gone, legs and feet were huge-they did seep. Ok you get the point. But that was June, in July they recommended hospice, he declined, in August he was in and out of ER & a nursing /rehabilitation center, then in sept he went into the hospital and never came out (passed 10-12-16). His kidneys failed. His MELD score was 35. Anything else you want to know I will share. I just wanted to tell you my dads timeline. I'm thinking of you I know how hard it is.

Hi all. Thanks for your messages. My dad didnt make it and passed away on Monday morning. Thanks for the support. Hope you and yours are ok.

Trust1
Trust1Administrator in reply to Jimbo32

Jimbo32,

Sincere condolences for the passing of your dad.

Warm wishes,

BLT

Miche49uk
Miche49uk in reply to Jimbo32

Hello Jimbo,

Very sorry to read this, my sincere condolences at this difficult time.

Take good care xx

Sorry to read this x

Sorry to hear of your Dad's passing. It is always sad to hear of people being lost to this horrid disease.

My thoughts with you and the rest of your family.

Katie x

I am sorry you had to go through all that misery and have your dad pass away. When I hear of the different phases of this disease and the misery it causes both the family and the patients, I can't understand why there is not more awareness of this disease as in cancer. All the symptoms came up on my daughter within a week and she didn't even know what was going on! Until she got to the hospital and I got a call, we were living in a different world. Because I am a reader, I found out quickly how poorly her condition was. Now I'll do everything to bring her back from this hell. I wish cirrhosis of the liver was advertised more. It could help many people who choose to drink..

I'm so sorry :( it is so hard :( xx thoughts are with you..

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