Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Hi Folks, Our family is learning more each day about PSC, and we have some questions for those with more first-hand experience. 1) What is considered the best facility for liver transplantation for PSC patients in the East: - Mayo Clinics in ville or Minneapolis? - The Starzl Transplantation Institute at Pittsburgh Presbyterian Hospital? - Other places? 2) Who are the most renown hepatologists that treat PSC patients? Where are they located? 3) Are there usually different doctors that do a liver transplant vs treat the patient prior to the transplant? 4) Does anyone have a highly recommended hepatologist in South Carolina? 5) Is hepatologist the right term? We use " liverologist " because we're not sure...! Thanks so much! Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 I'll take a shot at answers. 1) What is considered the best facility for liver transplantation for PSC patients in the East Mayo (Phoenix, Rochester or ville), Denver and Pittsburgh are considered to be top notch. All three of them have hosted our annual conferences (Denver, Pittsburgh, ville). Mayo, ville probably has the shortest wait time. I've not heard Rochester as being East , but it's well respected. There are others that do very well - hopefully someone else (with experience) will answer. 2) Who are the most renowned hepatologists that treat PSC patients? Where are they located? In the US, probably Dr. Lindor (Mayo, Rochester). He was the keynote speaker at the 2006 Pittsburgh conference. In the UK, Dr. Chapman. 3) Are there usually different doctors that do a liver transplant vs treat the patient prior to the transplant? To my knowledge, almost always different 4) Does anyone have a highly recommended hepatologist in South Carolina? Sorry, someone else will have to answer this one. 5) Is hepatologist the right term? We use " liverologist " because we're not sure...! Hepatologist. These are excellent questions - keep asking! Arne 57 - UC 1977 - PSC 2000 Alive and well in Minnesota ________________________________ From: [mailto: ] On Behalf Of carol.dellecker Hi Folks, Our family is learning more each day about PSC, and we have some questions for those with more first-hand experience. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2008 Report Share Posted June 11, 2008 Carol, Welcome to the group, but sorry you have to be here. I too live in South Carolina, Greenville, but just have a gastro, there are none here and to me that is amazing with a city the size of this, maybe someone else from other places in SC can answer this. Where in SC are you? I do know that there are several people from Charlotte NC, so if you are close to Charlotte they may be able to let you know of one there. Bettyann (SC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2008 Report Share Posted June 11, 2008 Hi, I am in Hershey PA and from what I am told Milton S. Hershey Medical Center is one of the best liver transplant hospitals in the North East. My doctors are great and work as a team. I have had two ERCP's done so far and am scheduled for the third on June 24th. From what I understand Dr. McGarrity will only do four ERCP's before going on to the next process. However since I already have sever Bile Duct Disease after the fourth ERCP is done I could possibly go on the transplant list at that time. My LFT's are not that bad so long as the stints are in place. At this time I am dealing with other issues as well. Rheumatoid Arthritis, itching, I am already on 750 mg of Urso three times a day. I really don't think it is working too well for me. My doctors said they find that when you are on this dose it usually works for the itching. I am still learning about this disease and have lots more to learn. This site has been very helpful in answering a lot of the question that I have. Joy Hershey, PA Loving the smell of chocolate, free calories Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 > > 4) Does anyone have a highly recommended hepatologist in South Carolina? ================= Sorry to be so long answering this one. We were out of town for a few days and I'm just getting around to the oldest emails! The only hepatologists in SC are in ton at MUSC. This spring I learned that they just added a new one which should alleviate the long wait to see one. I don't know where you are in SC (I'm in Greenville), you can also have access to hepatologists with transplant programs at Emory (Atlanta GA), Duke (Durham NC), Vanderbilt (Nashville TN), and also one in Charlotte NC. Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 > > 4) Does anyone have a highly recommended hepatologist in South Carolina? ================= Sorry to be so long answering this one. We were out of town for a few days and I'm just getting around to the oldest emails! The only hepatologists in SC are in ton at MUSC. This spring I learned that they just added a new one which should alleviate the long wait to see one. I don't know where you are in SC (I'm in Greenville), you can also have access to hepatologists with transplant programs at Emory (Atlanta GA), Duke (Durham NC), Vanderbilt (Nashville TN), and also one in Charlotte NC. Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
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