Guest guest Posted January 1, 2009 Report Share Posted January 1, 2009 Hi Barb Thanks for that, I see it the poll as a sort of a census. That in the first week of 2009 this is the state of the PSC discussion group, (wouldn't it be great if all 1,600 were able to respond). I agree, as you say, that we cannot count on it, as I was diagnosed 3 years ago, the specialist said he would not be surprised if I had PSC for 15 to 20 years! > > I hope no one is planning their future or banking on the results of any > of these polls. While they may be somewhat helpful, you can't count on > your course following any information found here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2009 Report Share Posted January 1, 2009 Just thinking about this subject. SInce my son never had a liver biopsy we were never told what stage he was in and I do wonder.I know that there doesn't seem to be anyway to tell the stage by the symptoms since some don't seem to have manysymptoms even late in the disease. So I am wondering if there is any data that could be added to the symptom data and then together give us a clueas to staging. Could we add different blood test results, length of time since diagnosis, and frequency of cholangitis attacks and anything else you can throw in thatwould graph out to some hint as to what stage people might be in?Before transplant, how many experienced most, some or none of the above?Would this be a possibility?In the meantime I feel a little like that maybe we are almost better off not knowing.LeeHi Barb.Best wishes for a great 2009.No, he didn't say and I didn't ask what stage I was. I feel pretty healthy and I think if I was told I was stage 3 or 4 it might negatively affect how I feel about the state of my health. So I am working on the principle that I am seen every 6 months and they can do the worrying about how ill (or not) I am and I will do everything possible to remain up to date with what is happening in the PSC world and try to remain healthy. Sounds like a good idea??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2009 Report Share Posted January 1, 2009 Just thinking about this subject. SInce my son never had a liver biopsy we were never told what stage he was in and I do wonder.I know that there doesn't seem to be anyway to tell the stage by the symptoms since some don't seem to have manysymptoms even late in the disease. So I am wondering if there is any data that could be added to the symptom data and then together give us a clueas to staging. Could we add different blood test results, length of time since diagnosis, and frequency of cholangitis attacks and anything else you can throw in thatwould graph out to some hint as to what stage people might be in?Before transplant, how many experienced most, some or none of the above?Would this be a possibility?In the meantime I feel a little like that maybe we are almost better off not knowing.LeeHi Barb.Best wishes for a great 2009.No, he didn't say and I didn't ask what stage I was. I feel pretty healthy and I think if I was told I was stage 3 or 4 it might negatively affect how I feel about the state of my health. So I am working on the principle that I am seen every 6 months and they can do the worrying about how ill (or not) I am and I will do everything possible to remain up to date with what is happening in the PSC world and try to remain healthy. Sounds like a good idea??? Quote Link to comment Share on other sites More sharing options...
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