HELP!What is happening?

Hi new here and to internet. Heavy drinker 35yrs, Feb16 admitted with severe COPD exac. ,hyponatraemia,peripheral oedema,cellulitis,UTI etc. After numerous tests and a couple of ascites drains discharged April /May in a chair with the words " untreatable,incurable and inoperable ". A nurse later told me the itching and delirium /confusion due to my "liver not working. " In July told I had decompensated Cirrhosis but still nobody told me what was happening, or what to expect. Next app. told bloods ok and liver compensating despite ascites,weight loss (again) and pain. I asked about tx but told too poorly. Basically I just want to know prognosis and outlook as I'm v.confused. I stopped drinking in Feb and I'm greatly improved. I read here regularly and find it v.helpful. All replies to this will be gratefully received . Good luck to all.

15 Replies

  • Hi Nikolaus, my best advice, if you haven't already, is get a referral to a Hepatologist, as soon as you can. I can't give you a prognosis but they could. Cirrhosis can't be cured but it may be possible to stabilise it with low salt diet and good nutrition, supplements, and medication, and many people do live with it for years. A Hepetologist may also be able to refer you for a proper assessment for a liver transplant which is the last option when the liver stops working (decompensated), but that is dependant on other medical tests to ensure you are physically and mentally strong enough for the surgery. With no disrespect intended to nurses in general I would not just accept the untreatable / inoperable verdict without a second opinion from a specialist.

    Apologies if you have done all that already. I had most of the symptoms you get with Cirrhosis, and eventually I was fortunate enough to receive a liver transplant, so if you have any specific questions I am happy to help. All the best, Chris.

  • Hi Chris, thanks for your reply and advice,I will be in touch. P.S 're. the "untreatable, inoperable..."bit, it was a professor who said that!

  • Hi Nicolaus first and foremost it's great that you have stopped drinking, please keep it up. You don't say how your diet is, or whether you are a smoker or not?. All the conditions you mentioned apart from the COPD are caused by liver failure. You say that your last bloodwork was showing improvement, which I reckon is due to you stopping the drink. You should sort out a decent diet( speak to the dietician) if possible at your hospital, quit smoking if you do, and last but not least exercise. I know that the exercise won't be easy due to the COPD but just do what you can. If you do all these things then you are giving your liver the best chance to try and recover. But in the end the best person for you is your doctor, preferably a hepatologist who you should insist on being referred to, Best of luck Ian

  • Hi Ian.Yes I do smoke and I've tried and better tried but is v.hard.My diet and appetite are improving. I have Fresubin protein and Shots,but again I'm v.confused about whether to eat any and all protein, all but beef or just vegetable only! Anyway,thanks for the the help, Nick

  • Hi , my husband was diagnosed with cirrhosis 6 years ago , was on the list but unfortunately suffered 2 strokes so the decision has been taken not to proceed with a transplant .He doesn't eat any animal protein and this has made a huge difference in terms of managing encephalopathy. He drinks hot water and lemon each morning and takes lactulose and rifaximin . Wishing you all the best 😊

  • Just thought I would add to my first reply. Not suggesting this would be right for anyone else, but when I was diagnosed with Cirrhosis I was advised to take vitamin supplements, Thiamine and Strong Vitamin B complex. I was prescribed Spironolactone to help with the ascites / oedema, and a beta blocker, Propranolol (to which I had a bad reaction) and then Carvedilol, to help with the portal hypertension that leads to oesophageal varices. I took Lactulose to help eliminate the toxins that cause Hepatic Encephalopathy. I also found it difficult to eat properly and was prescribed Fortijuce which I took twice a day.

    I am not suggesting for one moment that you should just take any of that without medical advice / prescription, but it might help for a discussion with your doctor. They don't like to prescribe Fortijuce because it is expensive and I had to get a dietician to write to my GP to get it, but it was very useful.

    I must confess I had all that that advice from a Consultant Gastroenterologist following a series of hour long private consultations, and tests (gastroscopy and ultrasound) paid for by my medical insurance, but once it was in place I had it on repeat prescription from my GP. It was the same consultant that referred me to a Hepatologist for transplant assessment. Hope that helps.

  • im on exactly same meds chris i never miss a dose and yes lactulose is very important for toxin removal,,,,but i need to improve my diet,,all the best matt

  • Hi Chris.In response to your reply I too get all your meds with the exception of cardevilol and propanalol which I've been on before during one of my "warning episodes ",obviously unheeded! I also take questran for the itching.I've been asking for tamoxifen for the gynaecomastia and gabapentin for the neuropathy in my feet and L. legs but they aren't keen because of interactions which is understandable I suppose. If I could have my time again I'd never touch a drop,all the pain and upset it has caused!!!

  • Oh ok, sorry probably can't add a great deal to that for you then. Only since my transplant I also get neuropathic pain in my feet, or at least that's what they believe it is. Intense sharp stabbing and burning pains that come and go suddenly, mostly in the evening. It's really weird because I never had it before. I do take a low dose of Gabapentin which does seem to help. Pre-transplant I tried various things for the itching and the only thing that helped, albeit temporarily, was to put cold packs onto the affected area and soak my feet in ice cold water. The medication I was given for it, I think it was Chlorphenamine and Ursodeoxycholic Acid, didn't seem to work for me at all, although the Chlorphenamine was good for getting to sleep.

  • Hi Chris. Hope I didn't come across wrong with my last reply. As regarding the neuropathy I think if the pain were constant I would go mad or worse, it's excruciating. I too have tried various attempts at pain relief including amitriptyline, all to no avail.This and the itching to my mind are possibly the worst symptoms. I'm glad the ice works for you. Could you (or anyone else) tell me what mental and medical tests (particularly the respiratory )are used before consideration for a tx.Thanks

  • There were various respiratory tests when my hubby was assessed at Edinburgh. He was in the respiratory lab for ages doing peak flows, lung capacity and all sorts plus there is the heart & lungs exercise test which is either a treadmill or bike whilst you are wired up to all sorts of monitoring for heart and lungs, he had a mask on to measure various things during exercise.

    One of the first tests they did was an arterial blood gas test.

    Speaking with anaesthetists they did seem to lay a lot of emphasis on not smoking - my hubby never has though he was worried his life time of work welding might have affected his lungs but it didn't seem to have done.

    It's all to do with the risk of anaesthetics and prolonged use of oxygen whilst the surgery goes on (for up to 10 hours sometimes) and also post op when you might need to be sedated for a lengthy period.

    As regards the mental tests, he saw a psychologist before his assessment and there is usually social work and other input during the assessment to assess your support network and coping strategies etc. There was no obvious testing of this just observational and through discussions. If there is any history of drug or alcohol usage being involved then I understand that staff trained in addiction and such like also have an input though we didn't have to go through any of that.

    Wishing you all the best, Katie

  • No you didn't, not at all. I was five days in the hospital having tests for transplant assessment. From what I remember they included peak flow, and a measure of respiratory gasses where you ride an exercise bike wearing a mask that measures them. I also had ECG, chest X-rays, loads of blood tests, a muscle strength measurement with a device you squeeze with your hands. I had ultrasound, MRI, and arterial blood gasses. I don't remember any specific psychological testing only a brief chat with a psychology nurse who asked a few questions about lifestyle and support at home. I also saw consultants, surgeon, anethesist, and transplant co-ordinator. It was very thorough. I may have forgotten a couple but that was the bulk of them.

  • I too have so many problems here. Throbbing and numbness, I can deal with. The cramp attacks are too much for me. Have been to doctors, neurologists many times and have a further appointment on 25.10. Many different medications including all those mentioned in previous correspondence from other members. I have come to the stage of giving up and living with it. I cry/scream most nights in pain. Apparently it could be side effects from the anti-rejection meds. (in my case Cyclosporine - neurol) I can only feel for those who go through this too and would be grateful if anyone can share their experience of any successful treatment. xxx

  • Hi all,

    With regards to all the medications being discussed in this post, please only take the medications prescribed to you by your own doctor, and discuss taking any other 'over the counter' medications with your GP in the first instance.

    Best wishes,


  • Firstly,thanks to all for help and advice.Can anyone tell me if alcoholic cirrhosis is progressive or does the scarring stop after you stop drinking?

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