Decompensated Cirrhosis and follow up ... - British Liver Trust

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Decompensated Cirrhosis and follow up consultant appointment for husband

Squirrel77 profile image
22 Replies

Hi,

I’ve been lurking for a while but this is my first post.

My husband was in hospital in May 2021 after a variceal bleed, he was having tests done before this as they suspected Cirrhosis, and after admission he admitted he had alcohol problems, and they treated him with banding, and he had previously had ascites too.

He had a consultant appointment with Gastro team, just after his discharge, and she said to give up the alcohol (with support) and then a transplant could be an option once they have a clearer picture in a year to 18 months if it would be helpful, and has had 2 ultrasounds since, the first showed scarring (we had a letter from the consultant stating scarring was present as expected) and then the most recent in June said no change from the last scan. This is the first appointment since then.

He had bloods done in August with the GP as part of his annual check up, and his bloods were all good, his sugars are well within the healthy range now, and the doctor said he has really turned it around by giving up the alcohol and his health has improved massively, the only thing to keep doing is to lose a little more weight.

We are so nervous about the appointment next week and what to expect, he is so much healthier now since giving up the alcohol, whereas before he was sleeping a lot, struggled with excercise, and other health problems.

He is on Thiamine, beta blockers and another low dose of medication for addiction, and has no symptoms at the moment.

I know no one can give us the answers, but can his liver become compensated again, and is giving up alcohol and staying a healthy weight the most important things to keep doing?

Thank you for any advise, friends and family know about the addiction now and have been supportive, but I know they don’t have the same understanding as people who have been through it.

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22 Replies
AyrshireK profile image
AyrshireK

Yes, it's entirely possible that his liver may have become compensated with his continued abstinence.

My hubby is 10+ years on from his initial diagnosis of decompensated liver disease (his due to auto immune liver disease rather than alcohol). He was listed for t/p in 2014 but stabilized enough to come off list and is still going ok. Well compensated for years now.

Squirrel77 profile image
Squirrel77 in reply to AyrshireK

thank you for your reply, I’ve been trying not to google too much, but it’s not easy!

redpoint72 profile image
redpoint72 in reply to Squirrel77

Hello love. Yes it certainly is possible to become compensated,after being decompensated. I am currently classed as compensated. It sounds as though your hubby has done really well, well done to him.....not easy.. I to had a variceal bleed,banded,very scary time. Also ascites, several drains were done. Its good to be able to reach out to folk who have gone through it first hand,we all fully understand!!!!. I'm on thiamine, carvedilol, furosemide, lansoprazole.....giving up the alcohol is the most important thing he has to do....and he has done great on that front. I've not touched alcohol in nearly 4 years now myself!!!!. Although I've lower leg fluid accumulating, unfortunately. My bloods have never fully settled to where they should be,even after nearly 4 years of no drink. Your lucky to have supportive family and friends.

Take care love. Chris

Squirrel77 profile image
Squirrel77 in reply to redpoint72

thank you Chris, he has done very well to give up the alcohol, and it’s not been easy for him, well done to you too, nearly 4 years is great.

Mamaof2kids profile image
Mamaof2kids in reply to AyrshireK

my liver itself has been raised slightly 2 blood tests and they have no idea why but was thennnromal again 15 to 20 points on ast levels but it was around 42 and atl around 52 at highest and they have no idea scares me as I don’t drink daily at all and hardly take any Tylenol only took a few Bauer for pain in tooth weeks before the one blood test they still have no clue as had ultrasound was normal no fatty liver and the rest normal just my ana test positive to show I have a chance to have auto issues but have no other signs so they don’t know scares myself as my cousin died of liver failure at 33 Last month and I’m still in shock as she was like my sister

Squirrel77 profile image
Squirrel77 in reply to Mamaof2kids

I hope you can get some answers, it’s not easy is it when you don’t know what’s happening.

lonmallin50 profile image
lonmallin50

yes if your bloods are showing good keep up the good work well done for packing in i packed in 9months ago still got de compensated liver its lucks like your husband caught it quick good luck

Squirrel77 profile image
Squirrel77 in reply to lonmallin50

thank you, and good luck to you too.

Bs1524 profile image
Bs1524

it is possible, my husband was diagnosed in May 2019 at his annual check up the Heptologist stated he is compensated, Childs Pugh gone from C to A and he is ok to fly. He feels as he put it “Normal”. He has been taken of most meds apart from a beta blocker diuretic and Lansoparole. He hasn’t had the beta blocker as he doesn’t like the way it makes him feel and at his latest scan everything was good.

Squirrel77 profile image
Squirrel77 in reply to Bs1524

thank you, and good to hear your husband is feeling normal, that sounds like a good sign.

Mamaof2kids profile image
Mamaof2kids

my cousin who just turned 33 in sept died from failing liver since she supposedly didn’t quit the drinking and smoking so your husband in right direction and get the liver transplant if he needs just stay off the drinking is the best thing he can do to save any part of his liver

kensimmons profile image
kensimmons

There are patients that have live for over 20 (and even more) years after a cirrhosis diagnosis. As I read once "this is a disease where a lot is really up to the patient". Perhaps your husband can be one of them too. (No promises and of course I am not a doctor).

Here is an article about once success story.

newsweek.com/alcohol-nearly...

Squirrel77 profile image
Squirrel77 in reply to kensimmons

thank you, I know there are no guarantees but hopefully as he is doing everything right, he will be lucky.

Edna14 profile image
Edna14

Hi, definitely giving up and staying off alcohol is very important. My partner who was a heavy drinker gave up alcohol as soon as he was told he had cirrhosis. He then had over 12 years of compensated cirrhosis before his became decompensated requiring a transplant. We changed his diet too so he lost weight as well as not touching alcohol. I gave up drinking too to support him. We were told that it was possible for it to go back to being compensated but his didn’t. Abstaining from alcohol was one of the requirements of the transplant. Well done for being so supportive and good luck

Squirrel77 profile image
Squirrel77 in reply to Edna14

thank you, he knows giving up the alcohol is the biggest thing he can do to help, and he is still doing very well with that.

Keith01 profile image
Keith01

yes I lived a normal life after cirrhosis, the abstinence of alcohol is essential. I got really I’ll a year ago as somehow got infected by hepatitis E but again am turning it around as talk of a transplant made me focus . Need to exercise daily, easy in summer but not so easy now..eat healthy, and stay positive and he can live a normal life. Worth asking about hep b inoculation. Take care and God bless.

Squirrel77 profile image
Squirrel77 in reply to Keith01

thank you, I’ll make a note of the hep b to ask, well done for turning things around too.

KulG20 profile image
KulG20

Hi

I decompnstated three years ago was discharged then had 4 major bleeds in one night that meant another month in hospital where I had 12 pints of blood transfused, 3 days on sedation and being ventilated, statistically I shouldn’t be here now

This week my hepatology consultant said I look amazing, albumin production is at 90%, bilirubin is falling the reason I can’t put my finger on.

I had a low emotional week but it happens

Abstinence is the main thing

In therapy we are taught

“One is too many and a thousand is never enough “

So I learnt never let the one enter your life

Miracles can happen.

The most important thing that has helped me is is diet and meditation

If you like apps I use Calm it has so many things to help so many people I cannot recommend it to enough

It’s never over ❤️

Squirrel77 profile image
Squirrel77 in reply to KulG20

thank you, it’s not an easy journey is it, he knows he can’t even touch a drop and thankfully doesn’t want to.

Rshc profile image
Rshc

Hello! I am in a similar situation. My partner diagnosed 22.12.21 after becoming very ill suddenly and stopped drinking that same day. Diagnosed with decompensated cirrhosis and then after 6 months alcohol free they started discussing transplant with us as they said that at 6 month improvement usually slows, he was listed in October and his bloods have continued to improve so we are in a bit of a strange situation were we are hoping that he gets his transplant call but also kind of wondering if he may still improve some more.

Squirrel77 profile image
Squirrel77 in reply to Rshc

it’s not an easy journey is it, I hope your husband continues to improve.

Savealife123 profile image
Savealife123

Hi, I think I'm going through the same as you with my husband, I'm so worried, yes they said he has decompensated liver desease 😭

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