Guest guest Posted April 20, 2007 Report Share Posted April 20, 2007 Stage 0?? They must have a special classification just for Chad! That is great to hear. I've been asymptomatic for all 15 years that I've known I had PSC. I don't have a secret but have some suggestions that I think have helped me. 18 mo ago I learned that the left hepatic duct was blocked. It was diagosed by MRCP. This was a regularly scheduled one that I had postponed for 18 mo because I felt well and thought I was too busy to make the 6 hour roundtrip to Boston just for that. So I highly recommend pushing for CONSTANT VIGILANCE* by a non-invasive method every year or 2, because there can be serious problems that develop and can be irreversible by the time you find out. My left lobe is now out of action permanently. BUT, I've never been sick from PSC (although what doctors have done is another story). The right lobe was also thought to be one the way out, because there was a large stricture on that side too and the first two attempts to stent it failed. However last fall, with a new ERCP spy scope my endoscopist (Dr Doug Pleskow, Beth Israel-Deaconess, Boston, MA) was able to dilate it. Also 's plugging fish oil's anti-inflammatory role seems right on the nose: DHA is the component that is thought to work best (Dr Freedman's work), so try to find DHA or a fish oil high in DHA. My LFTs have gone in the right direction, and my Alk Phos is now... 107! I am convinced that high-dose Urso is a good thing, there are papers on the Files section at Yahoo to back you up. And of course exercise is good. Especially for women- bone density loss is a problem for me. Bone density probably is not a problem for Chad. Best, Martha (MA) 44 UC 1979, PSC 1992, asymptomatic *I'm not shouting, I'm just an overgrown kid who is excited about the new Harry Potter...My motto: it's never too late to have a happy childhood. > > Hello.... > My husband Chad is feeling so much better with no gallbladder to slow him down! > He got his biopsy results back today. they do confirm PSC, but the doctor said that he was between stage 0 & 1. he is referring him to Indiana University Med Center Hepatologists. > Has anyone had experience with these doctors? > What should we expect from them & what would be questions that we might need to ask? > > Thanks, > > Tammy (wife of Chad- diagnosed PSC today) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2007 Report Share Posted April 22, 2007 Sorry, me again! Chad is on that Ursodiol. if he takes it 2x a day he itches a lot. if he only takes it once a day, he doesn't itch as much. isn't that supposed to help the itching??? just curious! TammyMartha wrote: Stage 0?? They must have a special classification just for Chad!That is great to hear. I've been asymptomatic for all 15 years that I've known I had PSC. Idon't have a secret but have some suggestions that I think have helpedme. 18 mo ago I learned that the left hepatic duct was blocked. It wasdiagosed by MRCP. This was a regularly scheduled one that I hadpostponed for 18 mo because I felt well and thought I was too busy tomake the 6 hour roundtrip to Boston just for that. So I highlyrecommend pushing for CONSTANT VIGILANCE* by a non-invasive methodevery year or 2, because there can be serious problems that developand can be irreversible by the time you find out. My left lobe is nowout of action permanently. BUT, I've never been sick from PSC(although what doctors have done is another story).The right lobe was also thought to be one the way out, because therewas a large stricture on that side too and the first two attempts tostent it failed. However last fall, with a new ERCP spy scope myendoscopist (Dr Doug Pleskow, Beth Israel-Deaconess, Boston, MA) wasable to dilate it. Also 's plugging fish oil's anti-inflammatory role seems right onthe nose: DHA is the component that is thought to work best (DrFreedman's work), so try to find DHA or a fish oil high in DHA. MyLFTs have gone in the right direction, and my Alk Phos is now...107!I am convinced that high-dose Urso is a good thing, there are paperson the Files section at Yahoo to back you up. And of course exerciseis good. Especially for women- bone density loss is a problem for me.Bone density probably is not a problem for Chad. Best,Martha (MA)44UC 1979, PSC 1992, asymptomatic*I'm not shouting, I'm just an overgrown kid who is excited about thenew Harry Potter...My motto: it's never too late to have a happychildhood. >> Hello.... > My husband Chad is feeling so much better with no gallbladder toslow him down! > He got his biopsy results back today. they do confirm PSC, butthe doctor said that he was between stage 0 & 1. he is referring himto Indiana University Med Center Hepatologists.> Has anyone had experience with these doctors?> What should we expect from them & what would be questions that wemight need to ask?> > Thanks,> > Tammy (wife of Chad- diagnosed PSC today) Ahhh...imagining that irresistible "new car" smell? Check out new cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
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