Discussions By Condition: Liver conditions

I'm 33 and was diagnosed with cirrhosis and end stage liver disease in March 2016.

Posted In: Liver conditions 13 Replies
  • Posted By: Anonymous
  • March 7, 2017
  • 08:28 PM

I had all the signs and symptoms of end stage liver failure including renal failure, extreme swollen abdomen, swelling so bad in my legs and feet I couldn't walk. Losing memory and thought process because of the toxins my liver wasn't processing. They said my only hope was a liver transplant but I had no insurance and I probably didn't have that long. The gave me blood transfusions, pulled liters of fluid from my abdomen, and put me on a lot of "fluid" pills to remove excess fluid. They said there was nothing else the could do kept me on the fluid pills and the meds to keep the toxins off my brain and sent me home and suggested I try getting on disability. It took months but I slowly got better. By the time I saw the disability doctor I looked fine and was denied so could not get on the list for a liver transplant. I still don't have insurance so can't afford to follow up with the liver specialist I saw in the hospital. I don't know what any of this means. They told me I was dying and now I seem ok but I thought once you were in end stage liver failure that was it. I don't know what to do any advice would be helpful. I don't know what to do.

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13 Replies:

  • How are you maybe the fluid tablets etc has helped I have heard that the liver is able to heal itself but not sure, anyway hope you are ok now, do not lose faith, cos it can move mountains. God Bless andkeep us posted
    HG
    Anonymous 1 Replies Flag this Response
  • That disease doesn't go away...
    Anonymous 1 Replies Flag this Response
  • I'm glad that you are feeling better and I hope your improved health continues.
    MilesD 0 Replies Flag this Response
  • Did you also change your lifestyle? If caught early enough it is possible to slow the progression and the liver can even begin to heal itself...
    "Reversing the problem
    Until recently, it was thought that a liver with cirrhosis could not be healed. This is usually the case because most diseases that cause scarring of your liver (fibrosis) are long-term and difficult to ‘cure’.However, recent research has shown that it may be possible to heal scarring and even cirrhosis where the liver disease causing this damage is able to be successfully treated.

    The treatment of Hepatitis B and C, as already mentioned, gives hope for the development of new drugs to combat scarring of the liver. More research, however, needs to be done before any
    new treatments become widely available.
    Anonymous 1 Replies Flag this Response
  • I hav been harming my self in my sleep wake up with massive bruises I'm on tablets fo anxiety and depression cause I haven't admitted half of what's goin on in my head because I have children and I'm petrified they will take them from me I don't know what to do I have suidcidal thoughts so times I can't sleep as I'm scared wot will happen next please hel me not good on computers so don't know if this is real or not
    Anonymous 1 Replies Flag this Response
  • Just a thought and it may in no way be relevant but worth a shot
    There is a type of autoimmune hepatitis not caused by a virus that can cause every symptom you listed and I've only se n in celiac patients
    It comes and goes for seemingly no apparent reason

    Any chance you may gut have celiac disease?
    Anonymous 1 Replies Flag this Response
  • Call Einstein Liver transplant center. They may be able to help you. The number is 215-456-8242. Hope this helps
    Anonymous 1 Replies Flag this Response
  • I hope that you are still doing well.
    MilesD 0 Replies Flag this Response
  • As a nurse, I've seen people with ESLF. The first was a woman who was virtually comatose the first day I had her. She had a G-tube and I recall giving her several shots of lactulose at a time. The next day, as I got off the elevator, she was walking arm in arm with her husband and was completely appropriate with memory intact. I had a fella in hospice, and as his ammonia level climbed, he would get really sqirrely and gave his poor wife a run for her money. He also became noticeably agitated. The other person I knew was my late husband. He has been gone for <4 months. He was never a big talker, so it was hard to know what he was going through in his mind. He seemed very appropriate all the time, but he did suffer forgetfulness. He had cirrhosis although he was never a big drinker... everyone asked. They said he only had two weeks, but he started getting dialysis & lived two years. He died in hospital of peritonitis. Do yourself a favor, get an advocate who will fight for you!!
    Anonymous 1 Replies Flag this Response
  • Did you also change your lifestyle? If caught early enough it is possible to slow the progression and the liver can even begin to heal itself...
    "Reversing the problem
    Until recently, it was thought that a liver with cirrhosis could not be healed. This is usually the case because most diseases that cause scarring of your liver (fibrosis) are long-term and difficult to ‘cure’.However, recent research has shown that it may be possible to heal scarring and even cirrhosis where the liver disease causing this damage is able to be successfully treated.

    The treatment of Hepatitis B and C, as already mentioned, gives hope for the development of new drugs to combat scarring of the liver. More research, however, needs to be done before any
    new treatments become widely available.
    Anonymous 1 Replies Flag this Response



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    Anonymous 1 Replies Flag this Response
  • My dad just found out last year he has construct heart failure, & this year he found out he has liver failure & His lungs are really bad & he has pulmonary fibrosis.. he doesn't want to do a lung or liver transplant.. how much longer could he live.. he is 63 going on 64 in September & was not an alcohol!!
    Anonymous 1 Replies Flag this Response
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