Guest guest Posted February 5, 2005 Report Share Posted February 5, 2005 I was diagnosed with PSC, UC, Type II Diabetes and Autoimmune Hepatitis in March 2004. Hospitalized for 7 days while doctors tried to determine what was happening to me. I was on verge of liver failure at the time. Was brought to hospital because of sever itching. Doctors kept looking for me to yellow in color, but I did not turn yellow. Was diagnosed with everything but PSC at that point. Went to Mayo Clinic in Rochester MN for 5 days and diagnosed with all above and PSC. Liver cat scans showed that from March 2004 to December 2004 that the small tiny dots on my liver were now large spots and are fingering thick throughout the inside of the liver. Guide wires were sent in the liver through an ERCP and two blockages were supposed to be ballooned open but only one could be opened. Guide wire could not get through the second blockage. I am going back to Mayo Clinic in March 2005 for more tests and monitoring and was asked to join a study on increased dosages of URSO. Study is to be 4 years long and I am thinking of doing it. Has anyone else heard of the European study and the results? Also, what should I be looking for with my liver...is it going to be getting worse? How close to needing a transplant am I compared to others? Is it 5 years? 10 years? or no one knows the answer? Need some help in determining what I should do and what I should expect. Thank you. Mark J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2005 Report Share Posted February 7, 2005 Mark, First... don't panic. ;-) If you've got PSC, Mayo is one of the best places in the world to be. I'm on the list at the University of Wisconsin and they frequently consult with Mayo. As far as prognosis goes, only the experts can tell you that. I imagine they'll be doing many of the same tests on you again next month for comparison purposes to monitor the progression of the disease. At this point, the best things for you to do are be diligent with your meds and take good care of your general health. Several people here are currently participating in high-dose Urso trials and have had no ill effects. Like I said, you've got some of the best GIs and Heps in the world at your disposal. Be an educated, informed, involved patient... but let them do what they do best. Peace, Bill Wise PSC '00, Listed Tx 11/04 Quote Link to comment Share on other sites More sharing options...
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