Guest guest Posted July 25, 2007 Report Share Posted July 25, 2007 Hi, I am new to the group. My son Jordan was diagnosed last June with PSC and UC and we were told he would probably need a transplant within a year. Urso and asacol have been extremely beneficial. Now his labs look pretty much normal and his latest MRCP of his bile ducts looked better than it did a year ago. I have made it through the donor evaluation and was ready to schedule the transplant until the recent labs and MRCP. The surgeons are discussing Jordan's case today to help us decide whether to proceed with the transplant or to wait and see how long Jordan can go, they said maybe 5 years or more. It seems his PSC is in remission right now. Being on all the drugs after transplant versus the risk of cancer with no transplant (which the dr. say is pretty rare for someone Jordan's age- he is 16). Plus the fact that I can't be a possible donor forever. We are leaning more toward putting the transplant on hold. Any thoughts? Thanks for taking the time. cindy -------------- Original message -------------- Hi Sally;Welcome to the group. I'm very sorry to hear about your husband's PSC and portal vein blood flow problems. It is possible that your husband's sclerosing cholangitis could be caused by an obstruction of the portal vein, as described in this article:Sclerosing Cholangitis: A Focus On Secondary CausesRupert Abdalian and E. HeathcoteHEPATOLOGY 2006; 44:1063-1074.http://usagiedu.com/articles/ssc/ssc.pdf(look under the section called "portal biliopathy")If your husband does not have inflammatory bowel disease (most PSC patients do have ulcerative colitis, Crohn's or indeterminate colitis) then this might be another reason for suspecting a "secondary" cause of your husband's sclerosing cholangitis. This would certainly be something to bring up with your husband's doctor next week.I hope that the portal vein obstruction c an be resolved. IF this is the cause of your husbands's sclerosing cholangitis, then you should be encouraged that overcoming the portal vein obstruction may lead to "partial or complete regression of bile duct abnormalities", as described in the article above.Best regards,Dave (father of (22); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
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