Guest guest Posted April 20, 2007 Report Share Posted April 20, 2007 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) 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...
Guest guest Posted April 20, 2007 Report Share Posted April 20, 2007 Hi Tammy; Our son has been treated at IU. He was first diagnosed with PSC at IU, following a liver biopsy and an ERCP. From the biopsy they were unable to determine whether he had PSC, but there was clear evidence on the ERCP (Endoscopic Retrograde Cholangiopancreatography). We went to Mayo clinic in Rochester, MN, for a second opinion. Mayo was able to interpret the biopsy samples (sent from IU to Mayo) and said it was stage 2 PSC. IU is certainly very good at ERCPs. Dr. Glen Lehman did the ERCP, and I understand he is considered a world expert in the procedure. My son was assigned to an excellent young hepatologist, Dr. Hwan Yoo at IU. Since then, Dr. Yoo has started his own gastroenterology/hepatology practice in Kokomo, IN, and our son has contined to visit him for routine check-ups and blood work. But we need to get our son reconnected with a hepatologist at IU in case of emergency. IU hepatologists will likely want to do blood work first to rule out other possibilities. I would suspect that if Chad has not had an ERCP they might want to schedule one? You didn't say whether Chad has already had an ERCP or MRCP, and whether or not he has had elevated serum liver enzyme levels? They will likely ask whether or not Chad has had a history of inflammatory bowel disease. After our son was diagnosed with PSC, the first thing they did was give him a colonoscopy, and then they found that he had ulcerative colitis, even though he had no obvious symptoms of this. Asacol has since markedy improved the appearance of his colon, and ursodiol has substantially improved his liver enzyme levels (fish oil may also have helped in this regard?). Rifampin has stopped his itching. Let me know if I can answer any other questions. Best regards, Dave (West Lafayette, IN) > 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? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2007 Report Share Posted April 21, 2007 Hello Tammy, I am sorry to hear of your husbands recent diagnosis. I have had PSC for 13 years and gone to IU the entire time. As I understand it, ERCP is the best method to determine staging of this disease. PSC progresses very differently from person to person. Dr. Lehman has performed my ERCP's and is very good. IU also performs numerous transplants. My hepatologist now is Dr. Naga Chalasani and he is well versed with PSC and aware of this support group & studies being performed in PSC research in the country. Best wishes to you and your husband Phil Drake PSC 93/n IN --- tammy VanCamp wrote: > 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) > > > --------------------------------- > Ahhh...imagining that irresistible " new car " smell? > Check outnew cars at Yahoo! Autos. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2007 Report Share Posted April 22, 2007 Dave, Thanks so much for the information... Chad see's Dr. Singh in Kokomo, IN (We live in Tipton County) He was recently diagnosed with UC... they did a lot of blood work & that's what started this whole thing & how he got diagnosed with this in the first place.... his ANA was positive & his Alk Phos was 850. The asocol & ursodiol & prednasone seem to be helping because when i took chad to the ER after his biopsy, the Alk Phos was 450! (after 2 weeks on the meds). He has not had the ERCP, but Dr Singh send the biopsy to IUmed pathologists for a 2nd opinion & they said he was between stages 0 & 1. Thanks again for the Dr info! Tammy wrote: Hi Tammy;Our son has been treated at IU. He was first diagnosed with PSC at IU, following a liver biopsy and an ERCP. From the biopsy they were unable to determine whether he had PSC, but there was clear evidence on the ERCP (Endoscopic Retrograde Cholangiopancreatography). We went to Mayo clinic in Rochester, MN, for a second opinion. Mayo was able to interpret the biopsy samples (sent from IU to Mayo) and said it was stage 2 PSC. IU is certainly very good at ERCPs. Dr. Glen Lehman did the ERCP, and I understand he is considered a world expert in the procedure. My son was assigned to an excellent young hepatologist, Dr. Hwan Yoo at IU. Since then, Dr. Yoo has started his own gastroenterology/hepatology practice in Kokomo, IN, and our son has contined to visit him for routine check-ups and blood work. But we need to get our son reconnected with a hepatologist at IU in case of emergency. IU hepatologists will likely want to do blood work first to rule out other possibilities. I would suspect that if Chad has not had an ERCP they might want to schedule one? You didn't say whether Chad has already had an ERCP or MRCP, and whether or not he has had elevated serum liver enzyme levels? They will likely ask whether or not Chad has had a history of inflammatory bowel disease. After our son was diagnosed with PSC, the first thing they did was give him a colonoscopy, and then they found that he had ulcerative colitis, even though he had no obvious symptoms of this. Asacol has since markedy improved the appearance of his colon, and ursodiol has substantially improved his liver enzyme levels (fish oil may also have helped in this regard?). Rifampin has stopped his itching. Let me know if I can answer any other questions.Best regards,Dave (West Lafayette, IN)> 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? 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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