Am new to all this! was diagnosed with chronic hep c last jan along with varices splenamegaly n portalhyprtension

Was diagnosed with hep in prison, then gallstones/gallbladder disease last feb, they told me i would need my gallbladder out, then went on to tell me i had varices n ciarrohsisis as well as the hep.Cos i was under escort at the time ,so they said to give the prison doc the dischsrge sheet n he would do the relevant things. to cut this short, he didnta! i got out end nov and went straight to rehab and found out how serious all this stuff is! The rehab is a T.C and involves a HEAVY scheduled day from 7 in the morning till 8.30 at night. im proper struggling with this at the mo,ive been there 16 wks and i get proper fatigued,also i keep getting confused easily,which im told by the liver nurse is part and parcel of my conditions.i cant take certain painkillers for the chronic pain i get. due to yhe varices i cant take nsaids and also cos of my previous addictions to stuff. im currently getting some good support from a hepc educator away from the rehab but ifeel very isolated and dont feel that some of the staff there,along with the doctor(who is a substance misuse specialist?gp) understand just what ive got going on or my condition. im at the hepatologist again on april 9 and as this will only be my second appt am hoping to find out a bit more stuff.my liver nurse has said to ask about getting referred to either birmingham or newcastle with regards a transplant.all this has proper burnt my head out!does anyone know where i could get other support around the wirral area(birkenhead) but not too late at night as i cant go out after 7 but they will mke an exception if its a proper support group... I live in hope!!?? xx

7 Replies

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  • Hi Paul

    Sorry to hear about your troubles. I had a liver transplant after many of the symptoms you describe. This was last April and it saved my life. I managed to get on the transplant list as I'd had a long standing disease unrelated to addiction issues.

    Are you at the stage where you could be alcohol and drug free for at least six months? Random testing to see you are sticking to it? That's your transplant ticket. Sounds like you need more information about your condition and the choices available to you. Hopefully others on this site will point you in the right direction. Good luck

    Nick

  • thanks for the comment nick, will be drug n ale free for 4mths 2moro, so will put it to my hepatologist on the 9th april, glad to hear your recovering well.

  • Hi Paul

    There is a very good online support network for people with Hep C here:

    hepcnomads.co.uk/

    They have members with all levels of liver disease caused by HCV right up to transplant and beyond. Its members are worldwide so whatever time of day you log on there is always someone online to offer support and answer your questions.

    Its easy to register, and then off you go!

    Bolly

  • ive now contacted the nomads and feel a bit better this week, although i do still feel like crap! does anyone have any ideas on how you can combat th fatigue and and brain fog, or is this summat i have to getr usede to? Hope not!!!!!!

  • Paul

    I have been diagnosed with hepatitis C and cirrhosis and find the hepctrust.org.uk a really useful site along with the hepcscotland site. Both really informative because there is some totally unreliable information out there. Unfortunately I have never been able to access the hepcnomads.co.uk site. Don't know why but so far have found the British Liver Trust and the hep c sites really helpful to me.

  • hi mate! have been in touch with hepctrust and yes!! they are great,as there is alot of unreliable info out there, even the doc at the rehab is not up to speed or aqware of just whats what regards hepc, ciarrohsis varices etc. n hes supposed to be a substance aBUSE /hep doctor! also the british livertrust sites are also good stuff, nice to know that there is some support out there.

  • Hi Cookie. Sorry to hear you have trouble getting onto the Hep C Nomads site. I suggest you try registering again, maybe with a different username?. Registrations have to be activated by admin (its just to block spammers). Admin members are volunteers so its possible your registration application got missed. But unless the IP address comes up with anything unusual your membership should get activated pretty much same day.

    Bolly

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