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.

11 Replies

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  • 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 😊

  • 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!!!

  • 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

  • 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,

    Rebecca

  • 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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