Lost and in despair

I haven't posted for ages. I've spent mostvof the time hoovering between and and utter despair. Hubby was admitted to hospital with internal bleeding from a vein he had had banded. Was a 50/50 chance of survival. We were warned if he survived he might not be the same person he was and that if he arrested they would not do cpr or put him on life support. This was utter devastation for me and my family. He recovered and the only side effect we noticed was slightly shorter fuse! I can live with that. His abdomen started to swell and he complained of feeling bloated and uncomfortable. Hospital admitted him to drain as it's as this was what they had diagnosed but there wasn't any. It turns out it's water retention for which he has now been prescribed some medication. Eases it a little but stomach still distended. Consultants appointment early January - liver failure with possible heart failure. No magic wand to say what time scale, nothing we can do to keep things at this stage.

Advance cirrhosis with decompensation means what in layman's terms???

I feel that I am on a ticking time bomb and can't relax cos I don't know when. I can't relax, don't want to leave him, can't sleep. I hate this disease!!!!

5 Replies

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  • Hi,

    It must be an incredibly difficult time for you, there are many followers on here who have been in your situation and can offer you guidance and support.

    In addition, The British Liver Trust have a publication on Cirrhosis that you may find useful to read, please note this is for general information and all specific advice needs to come from the medical specialists looking after your husband.

    britishlivertrust.org.uk/wp...

    It sounds like you need more clarification and understanding regarding your husbands diagnosis. You are within your rights to ask for another appointment with the speciaist so you can discuss all your questions.

    It may also be a good idea to make an appointment with your own GP and see what services and help are avaliable in the community for your husband, and also support for yourself.

    If you need to talk our helpline is open from 10am to 3pm Monday to Friday on 08006527330

    Warm wishes,

    Rebecca

  • I am sorry you are going though such a bad time, I have decompensated Cirrhosis and portal vein thrombosis and have banding done several times. I am on Propranolol to help reduce the need for banding and also on spironolactone to reduce my fluid.

    To help, I avoid adding salt to my diet, have foods only low in salt. I don't drink alcohol; I haven't since I was diagnosed Oct 2013. I don't smoke again gave up when I was dx. I eat 6-7 small meals a day, 3 lots of protein o support my liver and the carbs to support my energy. I sleep when I can and drink plenty of water.

    I am sorry I don't have a lot of experience with what you are going through. I am sure there are other people that will offer advice. I will you and your Husband all the luck in the world!!

  • My husband has decompensated liver and heart failure he had heart attack 12mths ago. He has ascites drain every month but his diuretics have been upped so fluid isnt as bad as it was. He also has a small tumour on liver (hcc) which is being monitored. All i can say is take each day at a time stick to a healthy diet no processed foods he follows a low sodium diet to help with fluid retention he also eats a few nuts a day and limited red meat and eats only chicken fish in moderation and beans pulses grains etc this i think has helped him and was advised by hepatologist to drink coffee there is info on british liver web site re study carried out about benefits of coffee on liver hope this helps and he also drinks water xx

  • sorry to read your post .I have compensated cirrhosis that I have had 9 years now this year .think my luck is running out now as I have several symptoms I have my first ever appointment on 28 Feb at liver unit .oh have though and still do have a low sodium diet .lots of protein .almond and hemp seed milk .I am also on prescribed vitamin D.as I am deficient and b12 and thiamine .I agree with Rebecca , go and see the consultant or doctor to clarify how things are long term .wishing you all.tbe best

  • My liver was decompensated when I was diagnosed a little over two years ago. With abstinence from alcohol and the right diet it is now recompensated and as normal as a cirrhosed liver is ever going to get (unfortunately stress caused me to hit the bottle again last summer and I'm still working on stopping again, but my last ultrasound revealed no further damage - but I'm just extremely lucky and that luck can't last forever). It isn't looking good for your husband, admittedly, but it can be turned around. He'll never be well, of course, but he doesn't have to die. I sincerely hope that he will listen to what his consultant tells him, and wish you all the best xxx

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