Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 My husband has been diagnosed with PSC since 2005, although we suspect he has had for 10yrs plus. He went for his 6 month workup at the University Hospital in Cleveland today. He is currently listed there but only with a MELD of 6. There were some complications with the Ultrasound so the tech was unable to send the results to the Dr. to read, so the Dr. came in to read the pictures. They stated they should not be talking in " front " of him like that, but they had no choice. has a cyst on his liver which we knew about but this time around they stated to him that they see a " discoloration " in the liver. asked more questions but they told him it could be a # of things and not to worry. Any ideas? Maybe his PSC is just progressing more? His worst symptoms to date are the fatigue and the ITCHING! One more question - his Dr. stated that his intense itching is actually a good sign. He said " as weird as that may sound, those who are further along with liver damage, usually don't itch " . Is that true? Thanks Husband - Crohn's '88; PSC '05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 Hi I'm sorry to hear about your husband. As far as the itching goes, I think that's pretty "normal" for people with liver disease. My MELD score is an 8 and I itch but I also know that when my itching gets really bad it is because my bilirubin level has increased. Has your husband been seeing his doctor for a long time?Serbrina-UC ' 01/PSC ' 04Sent via BlackBerry by AT&TFrom: "hockeymom1714" Date: Tue, 10 Feb 2009 23:57:50 -0000To: < >Subject: Ultrasound My husband has been diagnosed with PSC since 2005, although we suspect he has had for 10yrs plus. He went for his 6 month workup at the University Hospital in Cleveland today. He is currently listed there but only with a MELD of 6. There were some complications with the Ultrasound so the tech was unable to send the results to the Dr. to read, so the Dr. came in to read the pictures. They stated they should not be talking in " front " of him like that, but they had no choice. has a cyst on his liver which we knew about but this time around they stated to him that they see a " discoloration " in the liver. asked more questions but they told him it could be a # of things and not to worry. Any ideas? Maybe his PSC is just progressing more? His worst symptoms to date are the fatigue and the ITCHING! One more question - his Dr. stated that his intense itching is actually a good sign. He said " as weird as that may sound, those who are further along with liver damage, usually don't itch " . Is that true? Thanks Husband - Crohn's '88; PSC '05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 Hi I'm sorry to hear about your husband. As far as the itching goes, I think that's pretty "normal" for people with liver disease. My MELD score is an 8 and I itch but I also know that when my itching gets really bad it is because my bilirubin level has increased. Has your husband been seeing his doctor for a long time?Serbrina-UC ' 01/PSC ' 04Sent via BlackBerry by AT&TFrom: "hockeymom1714" Date: Tue, 10 Feb 2009 23:57:50 -0000To: < >Subject: Ultrasound My husband has been diagnosed with PSC since 2005, although we suspect he has had for 10yrs plus. He went for his 6 month workup at the University Hospital in Cleveland today. He is currently listed there but only with a MELD of 6. There were some complications with the Ultrasound so the tech was unable to send the results to the Dr. to read, so the Dr. came in to read the pictures. They stated they should not be talking in " front " of him like that, but they had no choice. has a cyst on his liver which we knew about but this time around they stated to him that they see a " discoloration " in the liver. asked more questions but they told him it could be a # of things and not to worry. Any ideas? Maybe his PSC is just progressing more? His worst symptoms to date are the fatigue and the ITCHING! One more question - his Dr. stated that his intense itching is actually a good sign. He said " as weird as that may sound, those who are further along with liver damage, usually don't itch " . Is that true? Thanks Husband - Crohn's '88; PSC '05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 Hi I'm sorry to hear about your husband. As far as the itching goes, I think that's pretty "normal" for people with liver disease. My MELD score is an 8 and I itch but I also know that when my itching gets really bad it is because my bilirubin level has increased. Has your husband been seeing his doctor for a long time?Serbrina-UC ' 01/PSC ' 04Sent via BlackBerry by AT&TFrom: "hockeymom1714" Date: Tue, 10 Feb 2009 23:57:50 -0000To: < >Subject: Ultrasound My husband has been diagnosed with PSC since 2005, although we suspect he has had for 10yrs plus. He went for his 6 month workup at the University Hospital in Cleveland today. He is currently listed there but only with a MELD of 6. There were some complications with the Ultrasound so the tech was unable to send the results to the Dr. to read, so the Dr. came in to read the pictures. They stated they should not be talking in " front " of him like that, but they had no choice. has a cyst on his liver which we knew about but this time around they stated to him that they see a " discoloration " in the liver. asked more questions but they told him it could be a # of things and not to worry. Any ideas? Maybe his PSC is just progressing more? His worst symptoms to date are the fatigue and the ITCHING! One more question - his Dr. stated that his intense itching is actually a good sign. He said " as weird as that may sound, those who are further along with liver damage, usually don't itch " . Is that true? Thanks Husband - Crohn's '88; PSC '05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 I don't know about the itching. That's one symptom my husband has never had. Currently his liver is FULL of stones, he is incredibly swollen and retaining fluid. Fortunately right now he's not too yellow (he's always sort of yellow). We go Thursday for the first part of the work up to get him listed. A month ago when he was in the hospital his MELD score was between 18-24. I'm not sure what it is right now. Best wishes for you and your husband. I pray that the " discoloration " they saw is nothing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 > ... One more question - his Dr. stated that his intense itching is > actually a good sign. He said " as weird as that may sound, those who > are further along with liver damage, usually don't itch " . Is that > true? For me it was. My most intense itching occurred about 5 years prior to my '98 transplant, after which it quieted down and wasn't too bad even though my bilirubin kept creeping up until it was around 18 a few months before transplant. Tim R, ltx 4/4/98, 6/18/07 & 7/7/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 > ... One more question - his Dr. stated that his intense itching is > actually a good sign. He said " as weird as that may sound, those who > are further along with liver damage, usually don't itch " . Is that > true? For me it was. My most intense itching occurred about 5 years prior to my '98 transplant, after which it quieted down and wasn't too bad even though my bilirubin kept creeping up until it was around 18 a few months before transplant. Tim R, ltx 4/4/98, 6/18/07 & 7/7/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 That is what happened in my case too. My itching was most severe early on and I did not have any during the few months prior to transplant when my biliruben was spiking at 20 and the average was around 15, Joe PSC & UC - 1990; Liver Transplant - 2007 > ... One more question - his Dr. stated that his intense itching is > actually a good sign. He said " as weird as that may sound, those who > are further along with liver damage, usually don't itch " . Is that > true? For me it was. My most intense itching occurred about 5 years prior to my '98 transplant, after which it quieted down and wasn't too bad even though my bilirubin kept creeping up until it was around 18 a few months before transplant. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 That is what happened in my case too. My itching was most severe early on and I did not have any during the few months prior to transplant when my biliruben was spiking at 20 and the average was around 15, Joe PSC & UC - 1990; Liver Transplant - 2007 > ... One more question - his Dr. stated that his intense itching is > actually a good sign. He said " as weird as that may sound, those who > are further along with liver damage, usually don't itch " . Is that > true? For me it was. My most intense itching occurred about 5 years prior to my '98 transplant, after which it quieted down and wasn't too bad even though my bilirubin kept creeping up until it was around 18 a few months before transplant. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 his Dr. stated that his intense itching is actually a good sign. He said "as weird as that may sound, those who are further along with liver damage, usually don't itch". Is that true?>>> I don't have an answer to your other questions and actually don't know if the itching question/answer is true. For me I never itched, early or late in the process. I do have a high pain tolerance which is a very good thing so maybe there was some mild for me itching which I just ignored.. Sorry I'm not more help. Blessings, Barby - KS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 his Dr. stated that his intense itching is actually a good sign. He said "as weird as that may sound, those who are further along with liver damage, usually don't itch". Is that true?>>> I don't have an answer to your other questions and actually don't know if the itching question/answer is true. For me I never itched, early or late in the process. I do have a high pain tolerance which is a very good thing so maybe there was some mild for me itching which I just ignored.. Sorry I'm not more help. Blessings, Barby - KS Quote Link to comment Share on other sites More sharing options...
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