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primary sclerosing cholangitis

Posted , 4 users are following.

leanne20
leanne20

I'm a 25 year old woman and have been diagnosed with Crohns disease and Colitis aswell as psc since I was 19.A week before christmas I was told that i would need a liver transplant.At the moment i have jaundice where its affected the colour of my skin not just the colour of my eyes.I'm more worried about the transplant and how long I will have to recover from it.

0 likes, 5 replies

5 Replies

  • martinePSCSupport
    martinePSCSupport

    Posted

    Hi leanne, I am sorry to hear that your PSC has progressed. Different patients have different recovery times after liver transplant with PSC. We do know that PSC patients to VERY well after transplant and it has been described as a 'new lease of life' by our medical advisers. Have you been able to speak to anyone else with PSC or who has already had a transplant?
  • leanne20
    leanne20

    Posted

    i have heard that people recover differently because some are stronger than others.I haven't spoken to anyone else with psc or have had a liver transplant.
  • martinePSCSupport
    martinePSCSupport

    Posted

    Hi again!

    Google PSC Support. There are a lot of us out there.

    Martine

  • martinePSCSupport
    martinePSCSupport

    Posted

    The website for the charity PSC Support is www.pscsupport.org.uk We offer support to anyone affected by Primary Sclerosing Cholangitis. (Sorry I didn't put the website before. I needed to check I was allowed first.)
  • sandi1
    sandi1

    Posted

    Hi, Leanne. I see Martine has already posted up letting you know about PSC Support UK. They're a great resource. You can also find pre-and post-tx PSCers through PSC Partners Seeking a Cure's sites. Here are some links to those:

    www.pscpartners.org

    tinyurl.com/pscpartnersfacebook

    tinyurl.com/PSCPClosedGroup

    Everyone is a bit different with PSC, but outcomes for transplant are relatively good. How quickly you recover can depend on any number of factors, but I know there are plenty of PSCers out there willing to share their stories with you. Some have recovered astonishingly quickly and others have taken quite a while to get back on their feet; but all agree that they feel much better after tx than they did before.

    I hope this helps!

    S

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