Diagnosed Aug 2014

Hi All, I am new to this site and wanted to share my story, read your story's and hopefully gain some more knowledge. I was diagnosed with decompensated liver disease (Cirrhosis) through years of alcohol abuse back in August 2014. My wife insisted I went to the Docs as I was so yellow with jaundice I could have passed for one of the simpsons. After the initial bloods, ultrasounds I was told that I was very ill and was admitted to hospital - (Billurubin 328, albumin 28, alt 65), Ascites, bleeding from gums, nose, backside, bruises the size of footballs, swelling in my legs and ankles. My wife had noticed 18 months before this came to a head that things were wrong, ie my stomach enlarging for no reason, sleeping pattern changing, personality change, no sex drive but I would not listen. From Aug until Dec I was in and out of hospital, I was having regular drains for the fluid every 2 weeks taking of up to 8 litres each time, fluid was coming out of my feet and ankles they were that swollen, I got SBP and then Sepsis and the docs said they didn;t think I would be leaving the hospital at the end of November. My Ascites was not being controlled by medication as my sodium levels were dropping and I was becoming confused. Since being treated for the SBP and sepsis I have been on regular antibiotics and have turned a corner. In the last 3 months my LFT's are almost back to normal, my ascites is almost under control, there is no longer talk of liver transplant. The only issue that is a constant now is that I have no energy or strength and I can not sleep properly. I have no muscle left in me and am concentrating on a high protein diet, I am seeing the physio people nest week at the hospital. I realise I am lucky to be alive and have been sober since the day I was told by the doctor that there was something seriously wrong with me (8 Months now) but I would just like to have some energy to do a little of what I used to do. Have any of you had a similar road and any words of advice would be most welcome. Thank you Steve

10 Replies

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  • Hi there, I have just read your post and congratulations on making it through. I could have been listening to my own conditions. I too went through the same .I know what it is to feel tired all the time. The way I look at it now is take one day at a time sweet Jesus. Congrats again.

  • You are doing all the right things... It will take a while so give it all a chance... The British Liver Trust website has lots of advice on how to look after your liver...

    Congratulations on being given a new lease of life!

    Pear

  • Hi, congratulations, you are doing brilliantly well! Actually, you may be able to advise me with something! I am aware of the muscle wastage and lack of sleep issues and also the bleeding gums. Seeing the physio should help alot regarding they can give you advice on how best to build up your muscles again; show you the correct exercises etc. I'm sure even just walking would help, 10 minutes a day at first, perhaps lighter exersizes at first for the arms and legs too. Re the lack of sleep, i have some indirect experience with this and to be honest, i really do not have any answers. I know, its horrendous; i guess you could try all the usual things, relaxation tapes, warm baths before bed. If it is really bad, perhaps a referral to a sleep specialist (although this is nigh on impossible on the NHS). I think the lack of sleep is one of the worst things as its bound to leave you with no energy. Sorry i cannot be of more help there. One thing i would like to ask you, re the bleeding gums? Did this ever stop? Would the dentist treat you? Well done!

  • Thank you all for your comments. Susieanna the bleeding has stopped mostly, the only time it starts again is if I take something say the odd paracetomol for the achng when it's at it's worst which my doctors has ok'd, then I bleed form everywhere again as above but only for a short time. For the sleeping my Doc changed me off of Zoplicone and has put me on Mirtazapine which seems to be having some effect as least I am getting a few hours as before I was up constantly. I take 100mg spironolactone daily does anyone know if the ascites will go completely, my last drain was back in December 14.

  • Hi

    Thanks for sharing your story, so similar to mine. If you read my post of Friday, you'll see you can turn it around. Stick to advised diet and muscle will return and energy, it's early days. I bought myself an exercise bike and initially could hardly get on the thing let alone pedal - now I do about 3 miles a day. My ascites went of their own accord. Best wishes A.

  • Hutch almost 2 years now since I was placed in a induced coma after 3 Varices bleeds in 5 weeks. Amazingly I survived and being told I will never work again caused me more pain than my illness. Although I did suffer from BI due to oxygen deficiency and other ailments. It took me a year to go outside and now I will go for a short walk every couple of days, but afterwards I have to rest for hours. So you have to be patient as it's a long road ahead. PS I haven't or even wanted any alcoholic drink whatsoever since 8th March 2013

  • Like a lot of the comments your path sounds like my own, its been 4 years now and still suffer the itching and lack of strength. Also my get up and got has gone but comes back to visit!

    Overall I feel a lot better than I did, struggle on and take each day as it comes and slowly I hope like me you get into at lease a tolerable state

    Good luck

    David

  • The good news is that you made some fast recovery, looks good, do not give up hope.

  • hi there, don't know much about effects of cirrhosis but good luck in your recovery-however-with respect to muscle wastage. Maybe look at these exercise plates-they work wonders for a friend of ours who has parkinsons-really helps the muscles without the effort. cheers

  • My husband has just been diagnose with cirrhosis from alcoholism he has had 7 liters drained last week he is very weak no energy,please keep me updated I am new to this thank you Benita

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