I was diagnosed in May 2019 with Cirrhosis and my Hepatologist told me it was Compensated and I would be monitored in the liver clinic every 6 months (the pandemic put paid to that plan). I've subsequently had two endoscopies which show six varices, one of which shows some evidence of past bleeding.
Over time I’ve developed oedema such that I’ve been unable to put on socks or shoes.
I’ve also developed ascites which has not been drained and is managed by diuretics.
13 days ago I was admitted to hospital after a period of unexplained vomiting during the night/early hours.
The doctors diagnosed spontaneous bacterial peritonitis and I was given 10 days of IV antibiotics, IV potassium, IV plasma and various supplements.
I was discharged yesterday after a near 12 day stay, with a follow-up appointment in the clinic in 16 days.
My discharge letter refers to my condition as De-Compensated.
Can this be managed with medication or is a transplant the only option to prolong/save my life?
Thanks for reading this.
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IanM1957
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Good question, But I don't have an answer. BUT I have read on here and many other sites about people who became decompensated and then went back to compensated..
I'm compensate for 8 years so far and I have yet to cross the de-compensated bridge.. Had some banding for bleeds bit no edema as of yet.
I think it's all a crap shoot as to what happens. All we can do is follow doctors orders.
How is your MELD? That's the only barometer here in the US to get on the transplant list.. Luckily my MELD has pretty much always been an 8.. I believe it's about 15 when they start looking at transplants.
Hi Ian. I was diagnosed with decompensated cihrossis in August 2021. I was put on lactulose, docusate, rifaximin and spironolactone. I gave up drinking completely at that point. I've just turned 60. I have now been taken off rifaximin but am still on docusate and laculose. Spironolactone they took me off earlier this year but I'm now back on it although in a halved dose. I now have compensated cihrossis and as long as I don't touch alcohol, I should be OK. I have liver scans every six months to check my liver as apparently people like me have a slightly higher risk of cancer. My situation is a bit complicated as I was taken into hospital with a top of the neck femur fracture. I also tested positive for Covid in A & E too. I now have a titanium rod in my right leg from my knee into my right hip. I had had a liver ultrasound done 2 months before my femur fracture which just showed that I had a fatty liver. I developed hepatic encephalopathy whilst in hospital and went into a coma 2 days after major surgery on my right leg. I have no recollection of anything for the next five weeks. I was in ITU with nigh on both liver and kidney failure. I developed both jaundice and ascites. Had the fluid drained. Nearly died twice and they sold my 28 year old son to think about putting me in palliative care. The consultant put a "do not resuscitate" order on me without consulting my son. I got pneumonia twice too. I came round 5 days after the DNR order. Knew what had happened regarding the leg fracture and who the prime minister was and was told if I ever touched a drink again I would die. No question - I would die. They told me I only had 20% of my liver functioning. Now, as said, this is a bit of a different situation. I saw the hematologist in November 2022 (4 months after being admitted with the femur fracture) and I asked some questions. My body had been protecting my liver, but when faced with major surgery and Covid it had to divert its resources elsewhere. I told her I'd never had ascites before or jaundice either. Anyway she said I'd probably live to be about 80. I had a friend who died of cihrossis - she was only 57. Apparently a pretty nasty and I imagine painful way to die.
Are you are lactulose, docusate and rifaximin? And are you having the ascites drained. I don't think diuretics such as spironolactone really work on this. I also get swollen ankles and feet. So me, from having decompensated cihrossis - I now have compensated cihrossis. I take milk thistle too. Any other questions, I'd be more than happy to help. My situation clearly had other circumstances added to it. I'm very shocked that my "fatty liver" could have deteriorated to such a degree so fast. I do hope that you are OK and get better soon. I'm rooting for you. Best wishes Golly x
Hi golly123. Thank you for your detailed response, when I was first diagnosed I was pescribed Carvedilol to maintain/reduce portal vein hypertension. I was later put on Bumetanide and Spironolactone for oedema and ascites. Whilst in hospital the dose of Spironolactone was quadrupled to 20 mg per day and I was put on Lactulose - whilst in hospital I lost 2 stones in weight. I hope things become clearer at my clinic appointment in 2 weeks.
Hi Ian. So lovely to hear back from you. I hope things become clearer at your next appointment. The waiting is one of yhe worst things I found. Just kind of want answers now and the NHS take their tome. That's an awful lot of weight to lose. I do hope you will be OK. If I can help with any more advise or anything, I'm here for you OK. Hope all goes well. My very best wishes Golly x
If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
Sorry to hear of your troubles and hope you are feeling better. I am in the US, so protocols are a bit different, but the disease is the same.
I was diagnosed with decompensated cirrhosis with ascites, portal hypertension, and mild varices. My MELD was in the 30s. After 6 months sobriety I was requiring paracentesis and was sent for transplant evaluations. During that time, my health continues to improve. By 9 months of sobriety I was also following a strict low sodium diet and of fish, eggs fruits and veggies.
Eventually I improved enough to not need transplant. My status has changed to “compensated.” I am now 2 years without drink and my MELD is 8.
From my other support boards, it seems if autoimmune is more the issue, it is tougher to go from decompensated to compensated. I’ve seen many who make the lifestyle changes (no drink, low sodium) maintain compensation status for a long time even after being in deaths door… like I was.
I wish the best in your journey. Let us know how you are doing!
Hi Zengal79, thank you for your reply, well done on your progress. I had been following a low sodium diet prior to my hospitalisation, had not drunk alcohol (had never been much of a drinker - my cirrhosis was caused by non alcoholic fatty liver disease)
wow, a meld of 8 after a 30. That’s very impressive! I started at 8 and it’s gone up a few points over a year. It’s weird too because I haven’t drank in over 2 years.
Hi Ian,When you are diagnosed at decompensated stage it means, your liver won't repair itself and the symptoms you have been having are showing that your liver is beginning to not work properly. If you download the documents supplied via the British Liver Trust that will give you lots of help. My mum was diagnosed at decompensated stage with ascites. She was too frail for a transplant but she did live for another five years. I would talk with your consultant about where you are, I hope you can get some answers soon, I would also encourage you to ring the liver trusts nurse helpline as they would be able to give you some help. Sending you furry hugs from afar xx
Hi 2022minks, I'm sorry you lost your Mum to this. I am working on a list of questions to ask when I have my appointment on 24 February. I will definitely read the information on the B L T website and wil phone the nurse helpline
I’m sorry to hear what you’ve been through and what you are going through however you are going through it which is a win in itself. Keep going and try to remain positive if you can. This is what I try to do.
Some of us wonderful humans get a raw deal in life for some reason. Hopefully it will make those of us battling through stronger.
I’m decompensated since July 2022. ARLD cirrhosis. Since lost 4st 8lbs but my dietician has put me on protein drinks etc.
My symptoms were: vomiting, nausea, ascities, extreme fatigue, nose and gum bleeds, severe hemaroids, random pains, stomach cramps, stiff sides tummy.
Medication: spironalactone 200mg, frusamide 80mg (dueretics as you know) a multivitamin and lactalose as needed.
How I feel now in February 2023: vomiting, nausea stopped . Nose bleeds stopped. Random pain not bothering me at the moment. Appetite keeps improving, hemaroids much improved.
Still having trouble with ascities but no drainage yet (hoping for this not to happen). Now that I can take these drinks like fresubin and fortini I hope I will gain some muscle mass and weight again. Endoscopy and sigmoidoscopy were clear thankfully. No other tests were done apart from ultrasound back in July when diagnosed. Still plagued with fatigue and a bit itchy but not in a very bad way. Ankles haven’t swelled but I’ve been told that might happen. My next goal is to try & go for a walk in the fresh air when I have the energy. I suppose I’m just telling you all this because things are very slowly improving.
I do not drink alcohol anymore and remained in recovery for years. Relapsed during Covid, no meetings and dealing with trauma in my life. Low sodium diet (everything has salt in) so it’s taken time for the palate to adjust. Cooking yourself is the only way but as we know when you’re so sick you just can’t do it.
From what I research and what I read on here it is possible Ian to in some cases manage it with your medical team. Hepatologist and dietician are key people here. The have never mentioned transplant to me as yet and I am hoping to keep improving and not need it but it’s always there at the back of my head.
The other 2 things I would be watching out for are liver cancer and kidney failure with the dueretics. As I understand it I will be in clinic every 6 months unless I get very sick all of a sudden and scheduled for ultrasound again in March or April.
Stay positive if you can and keep asking your questions here. I hope you get answers.
Hi Chick_atee, Thank you for your detailed and helpful response. Prior to my recent hospitalisation I was taking Carvedilol, 50 mg Spironolatone and 2 mg Bumetanide. The Spironolactone Has been increased to 200 mg. My feet and lower legs are now more or less normal and the size of my abdomen has decreased, I lost 20lb in hospital and am losing about 2lb a week since being discharged. You're right about some of us having a raw deal, since May 2019 when the cirrhosis was diagnosed I've had lung cancer, diagnosed with diverticulosis, type 2 diabetes and several colon polyps but , hey ho, life goes on. Take care, regards Ian
That is so much for you. Well done on pushing through. I am sorry to hear of all your other health problems. Hoping you will improve. It’s good the leg swelling is gone and ascities improving.
Hi Ian, Just checking in and seeing how you are doing, and whether you got more confirmation or advice from your doctors. I really did all my research for my mum through the British Liver Trusts downloadable booklets, they were my go to in discovering what was or could potentially happen. I think you just have to keep faith in life, and I know for you and others, this disease is not an easy ride, all you can do is be monitored and try to adapt to a healthier lifestyle to help your liver. Medication and testing is there to offset potential problem areas from arising. I hope you have a support network around you xx
Hi 2022minks, thank you for your message, I'm so sorry it's taken me so long to reply, truth is I've only recently been discharged from hospital after a near 3 week stay for treatment of Spontaneous Bacterial Peritonitis, yet another "lovely" side effect of decompensated cirrhosis. Another symptom I now have, since my liver can no longer filter toxins out of my blood, is a build upo of posonous ammonia in my brain which causes mental confusion, occasional shaking and the inability to stand or walk for long without tiring and/or falling over. Apart from that things are reasonably well and I hope they are for you too.
Hi Ian. How are you getting on today. I'm female aged 60. I keep hearing about a MELD score. As far as I can tell, all I've have done are scans. Not sure what they did to test me when I was in a coma though. I've just changed painkillers and the new ones are Dulexotine. The hepatic consultant says I'm fine to take them even though it warns people with liver damage to be cautious. Same with amytriptaline. Apparently when i came out of the coma in 2021 August, I was told I only had 20 percent of my liver functioning and that I would die if I ever drank again. I don't see why I haven't got a meld score. Do you have any ideas. How are you doing with all off this. You sound like you are having a very bad time of it. I totally admire your positivity and cheerfulness. Best wishes Golly (Jo) x
Hi Golly, the MELD (Model for end stage liver disease) score or more commonly in the UK - UKELD score (United Kingdom Model for end stage liver disease) is a calculation done by doctors based on the results from various blood tests (serum sodium, serum bilirubin. serum creatine and INR/blood clotting time). It is used as a guide for doctors as to possible life expectancy and transplant neediness.
In 11 years of his diagnosis of cirrhosis including transplant assessment listing/delisting my hubby has never been told his score. Many folks who do get told it end up fretting the scores rather than getting on and living life.
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