Advice needled

👋 everyone. My name is Lynnie and I was recently diagnosed with Stage 4 cirrhosis of liver. First thing, is this the exact same thing as end stage liver disease? I also have a chronic hepatitis c. Also, I am a recovering drug addict and alcoholic. I have 16 months clean with the assistance of a medicine called subutex. My fibroscan was 24.5. My liver enzymes were elevated and platelets were low at 120. I just wanted to hear if anyone has a similar past and see if you could share any information that might help me. Thanks in advance for sharing your storied with me.

4 Replies

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  • I think this could mean end stage liver disease. But have you been referred to a hepotologist?? If not please go to your GP and request this. They can tell you all you need to know. And do further testing if need be. Well done for remaining abstinent. Xx

  • This news was all from the hepotologist. She seems like a great doctor. I was just blown away when she said the stage 4 and didn't even hear anything past that. Thank you for your reply

  • Stage 4 Cirrhosis is the same as End Stage (though it doesn't at all mean you are near the end ........... it's a very scary tag to give something).

    For information on cirrhosis which makes sense and goes into all its in and outs have a look at the British Liver Trust page at:- britishlivertrust.org.uk/li...

    Now that you have a diagnosis of cirrhosis there are clinical protocols for managing and monitoring the condition. You should get blood tests at a minimum 6 monthly interval and also a 6 monthly ultrasound scan to check for any lesions appearing in the liver (with both Hep C and Alcohol induced cirrhosis you are a higher risk of developing tumours in the liver which can be effectively treated if caught within these 6 month scans). Also, it would be hoped you would be seeing a proper specialist.

    Now that you're addressing your alcohol and drug issues (WELL DONE) are they looking to treat your Hep C ? There are lots of folks on here who have successfully cleared Hep C with some of the newer treatments. It is a must to get rid of that ASAP to prevent a worsening of your liver condition.

    Also, has transplant ever been discussed as a possibility. It would be better to clear the virus first then give you a fresh start with a new liver. If you are clean and sober of drugs and drink you wouldn't be barred from transplant and it might be an option. If I were you I would certainly be asking the question about referral to transplant unit even to 'touch base' at this stage. Your liver isn't going to repair to any massive degree and will inevitably only get worse over time due to damage done.

    All the best to you, Katie :)

  • Thank you very much for your reply. I was seeing the hepotologist in hope of being treated for the hep C. I am concerned because my insurance won't pay for treatment for the hep C at stage 4. Doctor didn't discuss transplant yet. I do have an ultrasound scan scheduled in Sept. , so I am encouraged that she is following the protocol. I do have to go by the hospital once a month for alcohol / drug screen so maybe this is to establish history of clean test for transplant. Thanks again for all the help

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