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Primary sclerosing cholangitis

Hi everyone!  Hope everyone is doing well or at least on a good path to get well.  Things with Jeffrey are going down the toilet faster than I can imagine.  Last month he was diagnosed with PSC.  Does anyone else here have this?  I can't believe this.  With everything I read, researched, investigated, I never once saw this disease mentioned at as consequence of UC.  Well since I first mentioned this, we have been to Weill-Cornell.  We had an apt with the translant team which went well.  My question.  Dr. Brown, the transplant doctor wants me to transfer all of Jeffrey's care to Weill Cornell.  We have appointments with Dr. Bosworth, GI, and Dr. Shukla in Surgery.  Has anyone used these folks, know anything about them, etc.  we have an apt with Dr. dietz in Cleveland, but Dr. brown thinks his team is just as good And it's not necessary to go out to cleveland.  I know that due to the PSC, it is best to have all of Jeff's care in one location so everyone is on the same page and using a transplant doctor in Cleveland is not feasible.  He needs to be monitored ever few months and that's impossible if we have to travel to Cleveland.  Anyway, I'm looking for opinions, thoughts...  Just IM me if you don't want to leave a public comment.  Thank you!

 

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