End stage alcoholic cirrhosis remarkab... - British Liver Trust

British Liver Trust
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End stage alcoholic cirrhosis remarkable improvement.

steven11
steven11

Hi,

Just thought my wife's story might give hope and positivity.

Carol was hospitalised in April 2014 with massive abdominal ascites, leg oedema, malnourishment and a alcoholic cirrhosis liver and all other associated symptoms.

During that stay they drained about 30 litres of fluid, sorted her meds and she came home. There followed a summer comprised of a couple of spells in hospital due to blood test results (high potassium twice). Her Consultant felt that the way forward was transplant. Carol passed Addenbrooks assessment and to cut the story short, between September and the new year she was called four times for transplants that didn't happen

Carol still struggled with the ascites(stopped diuretics due to blood results) and her lowest point was in December when she almost lost her life due to Spontaneous Bacterial Peritinitis caused by infected abdominal fluid.

Now the good part!!

New year 2015 saw a remarkable turnaround. Slowly but surely she started getting better. She was having weekly and occasionally twice weekly blood tests that went direct to her medical team and tweaks were made as necessary to her mess. By March she was taken off the transplant list. Her diuretics were gradually reduced to a maintenance dose( 50mg spironolactone).

I cannot believe how well she now is. Her hair is healthy and bouncy and she positively glows. Her last ever alcoholic drink was new year 2014

Hope I haven't bored anyone

But I'm thrilled to have her back.

25 Replies
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congrats steve! Im a firm believer in that all young and healthy people should have a good read of these boards sometime, it should make think what is most important in life.

Great story. All the best

Just proves it's never too late. Best wishes to both of you x

What an amazing couple. You've had such terrifying times to get to the place your at now . Hope the progress continues and you are now able to plan your future.

Good luck

L13d

Wonderful story of hope and the clear affection you have for your wife. Being shown love and understanding, having the determination to change the lifestyle choices that made you ill, along with getting good medical care, are the keys to recovery. Continued good luck- you sound like a wonderful couple

Dear Steven,

This is a wonderful story - thank you so much for sharing... Congratulations to you and your wife. It is clear that you have been a pillar of support for her...

Sending you both super cyber hugs,

Pear

Congratulations on the improved health and good luck. I have a question if you could answer ---- the high potassium levels, what did they attribute that to as I haven't read where that is liver related. What were the levels (3.5-5.2 normal on our labs)? thanks

steven11
steven11 in reply to mr68gto

Hi,

All I know is that these episodes happened during diuretic treatment for her Ascites. I recall on one occasion her potassium was at 8. Her spironolactone was stopped immediately and she was admitted as an emergency although she felt ok. I think the condition was called hyperkalemia.

mr68gto
mr68gto in reply to steven11

Thanks - mine is high, not that high but I think kidney related, yes it is hyperkalemia.

That's excellent news. Best wishes to you both :)

Do you think coming of the drink was the key factor my husband stopped the drink nearly a year ago and last week he had 13 litres of fluid out cannot seem to reduce the ascites his arms are full of red blotches we are still hoping best wishes to your wife wonderful news

steven11
steven11 in reply to Phoenixv

I suppose we're all different but my wife's Ascites was the last thing to improve. She was very strict with her salt intake, laid off processed foods etc. so far as reducing salt, process foods are a no no.

She was alcohol free for 12 to 13 months when the changes happened. She was on strong vitamin b, Thiamin, spironolactone, midodrine, folic acid, rifaximin(antibiotic to keep you regular and keep encephalopathy at bay), lanzoprasol, that's from memory.

Basically her disease went from decompensated to compensated which I didn't think was possible.

She believes that a vital factor was the close links between her and the team and the regular blood tests that allowed them to tweak her meds. Plus her fighting spirit.

Good luck

Phoenixv
Phoenixv in reply to steven11

Thank you for that Steve I appreciate any help we can get

Artemis61
Artemis61 in reply to steven11

This has given me alot of hope. My brother was in a similar situation last year, he's stopped drinking and had made an unexpected recovery (the dr's gave him a 20% chance if survival). His bloods and liver function are nearly normal and his liver is slowly regenerating 🤞. He was diagnosed as decompensated liver disease so I really hope that he can move from that to compensated 🙏🙏. Take care.

scoobydoo10
scoobydoo10 in reply to Phoenixv

I had my last drink 21 month's ago at my worst they were draining 16 litres every other week. Over the last two and a half months it has been reduced by a litre every two weeks and am down to 11 now. I'm pretty sure that skin conditions are very common as I can just accidentally hit a part of my body and a big red blotchy rash will occur. What I have found that when I think that I am at my very worst and can't take it anymore I suddenly start to improve. I don't think I have answered your question but I do think that your husband is going through the same thing as me right now and his condition will improve I certainly hoping that it will. Stopping the drinking is huge while battling this desease won't cure the desease depending on what stage your husband is at but it will definitely help with all the symptoms that go along with it. Good Luck and my prayers go out to you and your family.

Amazing! Hope things continue to improve.....and well done to your wife.

Congrats to both of you, Great story, You're wife has done amazing. Very similar to my predicament, I was in Addenbrooks (c 4 liver ward) in

2013 with ascites, H. E, and peripheral odeama amongst other things. I havn't touched a drink since. Still on meds, (Spiro 100mg)

Lactulose and vitamins. So I know

that there is light at the end of the tunnel, You just have too keep positive and want to get better.

Again Congratulations and all the best in the future.

Good news is never boring.

Hi what made all that happen my husband stopped drinking last October they have given home 2 years to live I asked about the pump for the Ascites but they said he would not stand the op I asked about his hypertension they said nothing for that they said they would put him on the transplant list but he would not get one because of his age 71 and his blood group is O so is everyone's not enough livers to go round I have just had to organise his drainage again myself because the docs are not coming back to me I am at my wits end and feeling a bit isolated it is only what I read on this web page that keeps me going because there is always hope and I am really pleased for you both.

Best wishes

Carol

scoobydoo10
scoobydoo10 in reply to Phoenixv

Just wondering if there was any family or friends willing to see if they are a match? My son is being tested right now and will be my living donor if he is a match. I have a very big family and even a twin sister but nobody has offered to step up if my son isn't. I can understand that his age may be a factor but at this day and age people can now live well into their 90's, my Mother is 91 years old and is in pretty good health. I'm hoping this situation turns around for you and your husband.

Thank you so much for sharing this. My husband has just been diagnosed with cirrhosis and all we have been told so far is that there is no chance of a liver transplant and go elsewhere for more help. So I've been looking on the net, re his symptoms and it's been all doom and gloom. Your wife's story has given me some hope for the future.

Hidden
Hidden

Hi, I am so pleased for you and hope you continue to be well. Does it mean you do not need a transplant? I have have had very similar problems and complications with ascites perintonitis and similar tweaking of meds (diagnosed last November), all my symptoms appear to be improving and I have been hoping all along to get better so I do not need a transplant. But the medics stress that overall test results are constantly improving but the Liver is the same. Does anyone know of people's Cirrosis getting better? What can we do in addition to following abstinence from alcohol and following a healthy liver diet? Best wishes x

scoobydoo10
scoobydoo10 in reply to Hidden

I now know that once you have been diagnosed with stage 4 chorrohiss there is no cure but by abstaining from alcohol your symptoms will improve but will still need to have a transplant to become healthy again.

That’s amazing news Steven! I’m thrilled for you all. Im five weeks transplant. I too am an alcoholic recovery, I can hand on heart say that my life and my loved ones lives have been transformed since transplant. Best wishes to you both.

Hi Steven11

I hope you don’t mind me replying to your post after such a long time, I am new to this forum and came across your post, I have been diagnosed with cirrhosis and am struggling with this, looking for answers and hopefully a positive outcome, I found your positive and news about your wife very positive and inspiring, I hope you don’t mind but could I ask you how your wife is doing

Thank you

Deb

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