Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 -----Original Message----- I see a lot of literature talking about a transplant in 9 to 12 years, however, are most people stage 4 when they are diagnosed? My son was diagnosed stage 4 – Cirrhosis – 5 ½ years ago and he is still doing fairly well. Welcome to the group. Barb in Texas - Together in the Fight, Whatever it Takes! Son (Ken) 31 - UC 91 & PSC 99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 teri I don't believe most people are at 4 when they find their disease. As frustrating as it is there is no way to tell the time frame and order for symptoms. Your husbands lab could be relatively normal and he could be real sick. That is what happened to my son. He was 11 at diagnosis and at 19 his bili, protime and other labs was barely above normal. He had esphogeal varices, bled badly 4 times and got emergently tx. This disease sucks but the best thing to do is for your husband to listen to his body and let the Dr know when new symptoms came up. Martiterlthi wrote: Hi. My husband has been diagnosed with stage 4 PSC. I have been looking for information relating to a basic timeline or a basic progression of the disease. I see a lot of lierature talking about a transplant in 9 to 12 years, however, are most people stage 4 when they are diagnosed? There is a lot of literature about the symptoms and impact of the disease, but is there something that gives one a sense of what order these arrive? Thanks for helping someone new to all this! Yahoo! Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 I'm afraid about the only thing that is consistent in the progression of PSC is that it's not consistent. There are people on this forum that have had PSC for over 30 years and are still doing well. There are also some that have progressed to transplant in the space of a couple of years. The standard rule of thumb is 10 years from diagnosis to transplant, but as in all things, there is a wide variation. I was diagnosed in 2000 via ERCP. I've never been assigned a " stage " , but I've been asymptomatic (no elevated LFTs, no jaundice, no pruritis no pain, etc.) since 2001 after balloon dilatation and stenting of my CBD. No doubt about it - not knowing what's coming next (or when) is the worst part of it! Arne 54 - UC 9/77 - PSC 4/00 Alive and (mostly) well in Minnesota -----Original Message----- From: [mailto: ] On Behalf Of terlthi Hi. My husband has been diagnosed with stage 4 PSC. I have been looking for information relating to a basic timeline or a basic progression of the disease. I see a lot of lierature talking about a transplant in 9 to 12 years, however, are most people stage 4 when they are diagnosed? There is a lot of literature about the symptoms and impact of the disease, but is there something that gives one a sense of what order these arrive? Thanks for helping someone new to all this! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 I'll second that!!! All of that!!! (MO) PSC & UC 1984, pancreatitis 1997 Quote Link to comment Share on other sites More sharing options...
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