Early liver cirrhosis

Hi soz about this but my first time here I have been diagnosed with early stage liver cirrhosis I was diagnosed through having several blood tests and a scan which showed I had a very course liver I am currently waiting to see the specialist they have made me three apps and they have cancelled them all for what ever reason they can think of which is frustrating because all I have read is they need to find the cause so they can start treatment I do not drink and I have had the hep immunization and been checked for that and that was neg and they have immunised me against pneumonia and the symptoms I have is mainly fatigue and red blotches on my top half of my body I also suffer with PTSD and depression and anxiety so this is making me nuts and I have 5 children and I want b around to see them get married and I am 35 anyway that's my story would really appreciate some advice if anyone has it will b greatly appreciated thank youxx

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  • Hi my name is sheila try not to let it get on top of you . It's a real worry at first I have pbc overlap with autoimmune hepatitis I had all tests done backwards and forwards at hospital mri scans and liver biopsy. They traced mine back to 15 years ago which nobody picked up .I have finally started treatment urso tabs and you just carry on enjoy your good days know it's hard with children but try rest up if you can on bad days but your not alone . There's always someone on to help with questions but pls try not to let it get to you have you started treatment yet .there's also lots of good advice on Internet .I was told by consultant to go into British liver trust and look up pbc good luck and take care sheila

  • Hi Marie it is a worry but try to do the best you can I have been diagnosed 2 years now mine is quite advanced, I first had high liver function tests, but the only way they could tell was with a biopsy that was what confirmed mine, good luck if doctors keep cancelling apps then get on to the specialist secretary. Annette

  • Hi Marie,

    I was 25 when I found out I had cirrhosis. It was quite advanced and the cause has always remained unknown. I ended up having a liver transplant last November.

    They tried every test under the sun to try and find the cause but didn't find anything conclusive.

    The point being that sometimes they never can tell what caused the cirrhosis. Sometimes it stops getting worse, and I had hoped that was the case for nearly 15 years when it flared up and I needed a transplant.

    Hopefully they'll identify a cause and treat that. Cirrhosis can't be reversed, but hopefully it won't get worse. fingers crossed.

  • I too have cirrhosis of the liver ( non alcoholic ) and they don't know what causing mine ..like yourself I've had numerous tests ..had transplant in 1989 and they couldn't tell me what caused my liver to fail but apparently the same is happening again 😊

  • Sorry to here that Jane. I'm hoping that doesn't happen to me but of course there's always a risk. Like you they had the opportunity to look when it was removed and couldn't identify the cause.

    Do they think you will need another transplant?

    I mean if it's slowly getting worse it could still last a lifetime right?

  • Hi, they have said it will be a 2nd transplant but your correct in the fact that they don't know how long, tests are deteriorating and hospital visits more regular , I've been with the qe since 1989 so feel in good hands 😊

  • Hi Marie, sorry to hear about all of your health problems. Sounds like you have had a rough time and having 5 children would certainly cause you extra worry and fatigue. My story started with PTSD from my early life causing me to drink and in 2010 had liver failure, then again failure in 2013. I too have cirhossis, and like you have blotches but mine are all over - some days they are red and angry and others they calm down a bit. I no longer drink. Like you, Ive had appointments cancelled and it is so frustrating as you just want to be seen and get answers to your health concerns. My liver damage can be felt by Dr when he has given me an abdo examination and Ive had ultrasounds but not yet a fibroscan which apparently is a more detailed scan of the liver, nor have I had biopsy, The tiredness gets me badly and I live on my own so I can totally sympathise with your worries with the responsibilities you have as Ive only got myself to look after but I get lonely. I was given some psychiatric medicine once and apparently years later I learned that it can seriously damage the liver quite quickly and it was strange that although I was drinking I was also on this medication for a while. Im waiting to see a hepatologist on 14th Sept for the 1st time. I usually have 6 monthly hospital appts with a gastroenterologist but I had a lot of support and got the courage to ask for a liver specialist and lucky I have this sept appt (if its not cancelled at last minute).

    You are not on your own by any means and I can understand your worries but hopefully you will get some answers. You can ask to see a Hepatologist as you are within your rights like I did to do so.

    A healthy diet low in salt is recommended but not always practical.

    Best wishes

    julie

  • Hi I'm Jane 46 ..had transplant in 1989 and I now have cirrhosis of the liver ( non alcoholic ) really hard some days and the thought of a 2nd transplant scares me but I'm a fighter..keep at it on here there are some amazing people who share their stories...I've only been on here about a week and spoke to quite a few people who can understand 😊

  • Hey marieb07

    Just checking on you. Have you been able to see a specialist for your liver problem, If yes - What is the status of things. I have been diagnosed with Hep B.

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