Guest guest Posted August 6, 2008 Report Share Posted August 6, 2008 Hi all, I'm new to the group. A dear friend of mine was recently diagnosed with PSC. She does not have colitis but has suffered from celiac disease which has always been symptomatic in a rash and not in intestinal difficulties. She has had the results for a month and was finally told today by the Dr. that she needed to see a specialist and get on a liver transplant list. He only casually gave her the name of a Liver specialist. The diagnosing Dr is a gastroenterologist. He has also not really answered how far along she is in the disease. She had a sudden onset of major pain and jaundice. Does anyone have any good recommendations for the best Dr for this. We are in the Metro Detroit, Michigan area but are willing to travel to see the best. Thanks! Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2008 Report Share Posted August 6, 2008 Hi Liz, and welcome to the group. I do not have a Dr recommendations (since I live on the west coast of Canada), but I want to encourage your friend. I was quite jaundice and sick when I was diagnosed 19 years ago, but have been without major symptoms since. Such that my wife, who used to get very worried when ever I sneezed, recently told me she no longer believes my Liver will be the death of me (she now believes I will out live her). Ian (52) PSC 89 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2008 Report Share Posted August 6, 2008 Hi Liz, and welcome to the group. I do not have a Dr recommendations (since I live on the west coast of Canada), but I want to encourage your friend. I was quite jaundice and sick when I was diagnosed 19 years ago, but have been without major symptoms since. Such that my wife, who used to get very worried when ever I sneezed, recently told me she no longer believes my Liver will be the death of me (she now believes I will out live her). Ian (52) PSC 89 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2008 Report Share Posted August 6, 2008 Hi Liz, and welcome to the group. I do not have a Dr recommendations (since I live on the west coast of Canada), but I want to encourage your friend. I was quite jaundice and sick when I was diagnosed 19 years ago, but have been without major symptoms since. Such that my wife, who used to get very worried when ever I sneezed, recently told me she no longer believes my Liver will be the death of me (she now believes I will out live her). Ian (52) PSC 89 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2008 Report Share Posted August 6, 2008 Liz, Since it was advised that your friend get on the liver transplant list she should see a specialist associated with a liver transplant program - in Michigan either at Henry Ford or University of Michigan hospitals. In the US I think that Dr Lindor of the Mayo Clinic in Rochester, MN (http://www.mayoclinic.org/bio/10207414.html) is recognized as one of the experts on PSC. You can find a link to all 128 US liver transplant programs at http://www.unos.org/whoWeAre/transplantCenters.asp . I admit to a bias toward UofMich hospital since I have received 3 liver transplants there. I see Dr Marrero and feel that he provides me with excellent post transplant care. I do think that UofMich tends to be a bit medically conservative - relying on the tried and true rather than jumping to use any experimental treatments. I know someone who did not meet UofMich's or Mayo's criteria for transplant but were successfully transplanted at another center. So if you're told it can't be done, it most likely means they can't do it and you should look elsewhere. Tim R > I'm new to the group. A dear friend of mine was recently diagnosed > with PSC. ... She has had the results for a month and was > finally told today by the Dr. that she needed to see a specialist and > get on a liver transplant list. ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2008 Report Share Posted August 6, 2008 Liz, Since it was advised that your friend get on the liver transplant list she should see a specialist associated with a liver transplant program - in Michigan either at Henry Ford or University of Michigan hospitals. In the US I think that Dr Lindor of the Mayo Clinic in Rochester, MN (http://www.mayoclinic.org/bio/10207414.html) is recognized as one of the experts on PSC. You can find a link to all 128 US liver transplant programs at http://www.unos.org/whoWeAre/transplantCenters.asp . I admit to a bias toward UofMich hospital since I have received 3 liver transplants there. I see Dr Marrero and feel that he provides me with excellent post transplant care. I do think that UofMich tends to be a bit medically conservative - relying on the tried and true rather than jumping to use any experimental treatments. I know someone who did not meet UofMich's or Mayo's criteria for transplant but were successfully transplanted at another center. So if you're told it can't be done, it most likely means they can't do it and you should look elsewhere. Tim R > I'm new to the group. A dear friend of mine was recently diagnosed > with PSC. ... She has had the results for a month and was > finally told today by the Dr. that she needed to see a specialist and > get on a liver transplant list. ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 Tim, I just started following this support group and I also see Dr. Marrero. I have been his patient since 2000 and always wondered what anybody else thought of him. I have been stented twice in 2003-2004, but I am holding steady right now. I am not on the transplant list because he didn't feel it was warranted at the time. He is so easy going that I wasn't sure if he was an aggressive enough doctor. Was he your doctor pre-transplant as well? I am heartened to hear that you are comfortable with him. When were you diagnosed and when did you get your transplants? I appreciate any feedback on their program... Steve UC 1994/ PSC 2000 Re: Best Doctor Liz, Since it was advised that your friend get on the liver transplant list she should see a specialist associated with a liver transplant program - in Michigan either at Henry Ford or University of Michigan hospitals. In the US I think that Dr Lindor of the Mayo Clinic in Rochester, MN (http://www.mayoclinic.org/bio/10207414.html) is recognized as one of the experts on PSC. You can find a link to all 128 US liver transplant programs at http://www.unos.org/whoWeAre/transplantCenters.asp . I admit to a bias toward UofMich hospital since I have received 3 liver transplants there. I see Dr Marrero and feel that he provides me with excellent post transplant care. I do think that UofMich tends to be a bit medically conservative - relying on the tried and true rather than jumping to use any experimental treatments. I know someone who did not meet UofMich's or Mayo's criteria for transplant but were successfully transplanted at another center. So if you're told it can't be done, it most likely means they can't do it and you should look elsewhere. Tim R > I'm new to the group. A dear friend of mine was recently diagnosed > with PSC. ... She has had the results for a month and was > finally told today by the Dr. that she needed to see a specialist and > get on a liver transplant list. ... ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 Tim, I just started following this support group and I also see Dr. Marrero. I have been his patient since 2000 and always wondered what anybody else thought of him. I have been stented twice in 2003-2004, but I am holding steady right now. I am not on the transplant list because he didn't feel it was warranted at the time. He is so easy going that I wasn't sure if he was an aggressive enough doctor. Was he your doctor pre-transplant as well? I am heartened to hear that you are comfortable with him. When were you diagnosed and when did you get your transplants? I appreciate any feedback on their program... Steve UC 1994/ PSC 2000 Re: Best Doctor Liz, Since it was advised that your friend get on the liver transplant list she should see a specialist associated with a liver transplant program - in Michigan either at Henry Ford or University of Michigan hospitals. In the US I think that Dr Lindor of the Mayo Clinic in Rochester, MN (http://www.mayoclinic.org/bio/10207414.html) is recognized as one of the experts on PSC. You can find a link to all 128 US liver transplant programs at http://www.unos.org/whoWeAre/transplantCenters.asp . I admit to a bias toward UofMich hospital since I have received 3 liver transplants there. I see Dr Marrero and feel that he provides me with excellent post transplant care. I do think that UofMich tends to be a bit medically conservative - relying on the tried and true rather than jumping to use any experimental treatments. I know someone who did not meet UofMich's or Mayo's criteria for transplant but were successfully transplanted at another center. So if you're told it can't be done, it most likely means they can't do it and you should look elsewhere. Tim R > I'm new to the group. A dear friend of mine was recently diagnosed > with PSC. ... She has had the results for a month and was > finally told today by the Dr. that she needed to see a specialist and > get on a liver transplant list. ... ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 Tim, I just started following this support group and I also see Dr. Marrero. I have been his patient since 2000 and always wondered what anybody else thought of him. I have been stented twice in 2003-2004, but I am holding steady right now. I am not on the transplant list because he didn't feel it was warranted at the time. He is so easy going that I wasn't sure if he was an aggressive enough doctor. Was he your doctor pre-transplant as well? I am heartened to hear that you are comfortable with him. When were you diagnosed and when did you get your transplants? I appreciate any feedback on their program... Steve UC 1994/ PSC 2000 Re: Best Doctor Liz, Since it was advised that your friend get on the liver transplant list she should see a specialist associated with a liver transplant program - in Michigan either at Henry Ford or University of Michigan hospitals. In the US I think that Dr Lindor of the Mayo Clinic in Rochester, MN (http://www.mayoclinic.org/bio/10207414.html) is recognized as one of the experts on PSC. You can find a link to all 128 US liver transplant programs at http://www.unos.org/whoWeAre/transplantCenters.asp . I admit to a bias toward UofMich hospital since I have received 3 liver transplants there. I see Dr Marrero and feel that he provides me with excellent post transplant care. I do think that UofMich tends to be a bit medically conservative - relying on the tried and true rather than jumping to use any experimental treatments. I know someone who did not meet UofMich's or Mayo's criteria for transplant but were successfully transplanted at another center. So if you're told it can't be done, it most likely means they can't do it and you should look elsewhere. Tim R > I'm new to the group. A dear friend of mine was recently diagnosed > with PSC. ... She has had the results for a month and was > finally told today by the Dr. that she needed to see a specialist and > get on a liver transplant list. ... ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 I just want to add to what's been said that my experience of traveling to Mayo Clinic and being a patient there has been incredibly positive. They make everything easy for you and worth your time. Best of luck to your friend, Ruth UC - 2000, Colectomy - 2007 (at Mayo), PSC - 2008 > > Hi all, > > I'm new to the group. A dear friend of mine was recently diagnosed > with PSC. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 I just want to add to what's been said that my experience of traveling to Mayo Clinic and being a patient there has been incredibly positive. They make everything easy for you and worth your time. Best of luck to your friend, Ruth UC - 2000, Colectomy - 2007 (at Mayo), PSC - 2008 > > Hi all, > > I'm new to the group. A dear friend of mine was recently diagnosed > with PSC. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 I just want to add to what's been said that my experience of traveling to Mayo Clinic and being a patient there has been incredibly positive. They make everything easy for you and worth your time. Best of luck to your friend, Ruth UC - 2000, Colectomy - 2007 (at Mayo), PSC - 2008 > > Hi all, > > I'm new to the group. A dear friend of mine was recently diagnosed > with PSC. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 I was a live donor for my husband on 10/16/2006 at Henry Ford Hospital in Detorit. We had the head of transplant, Dr Marwan Abouljoud.. He is excellant and I would highly recommend him. edmlizzie wrote: > Hi all, > > I'm new to the group. A dear friend of mine was recently diagnosed > with PSC. She does not have colitis but has suffered from celiac > disease which has always been symptomatic in a rash and not in > intestinal difficulties. She has had the results for a month and was > finally told today by the Dr. that she needed to see a specialist and > get on a liver transplant list. He only casually gave her the name of > a Liver specialist. The diagnosing Dr is a gastroenterologist. He has > also not really answered how far along she is in the disease. She had > a sudden onset of major pain and jaundice. Does anyone have any good > recommendations for the best Dr for this. We are in the Metro Detroit, > Michigan area but are willing to travel to see the best. > > Thanks! > > Liz > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 , I have seen Dr Marrero since he came to UofM in 2000 (after my first transplant in 1998). He was my doctor when recurrent PSC was diagnosed in 2002, when I was relisted in 2005 and when transplanted in 2007 (6/19 and 7/7). I was initially diagnosed in 1989 after 9 years of high LFTs. Dr Marrero does have a laid back manner, but he is very focused on giving his patients the best medical treatment possible. Tim R > > I just started following this support group and I also see Dr. Marrero. > I have been his patient since 2000 and always wondered what anybody else > thought of him. I have been stented twice in 2003-2004, but I am holding > steady right now. I am not on the transplant list because he didn't feel > it was warranted at the time. He is so easy going that I wasn't sure if > he was an aggressive enough doctor. Was he your doctor pre-transplant as > well? I am heartened to hear that you are comfortable with him. When > were you diagnosed and when did you get your transplants? I appreciate > any feedback on their program... > > Steve > UC 1994/ PSC 2000 > > -----Original Message----- > I admit to a bias > toward UofMich hospital since I have received 3 liver transplants > there. I see Dr Marrero and feel that he provides me with excellent > post transplant care. I do think that UofMich tends to be a bit > medically conservative - relying on the tried and true rather than > jumping to use any experimental treatments. Quote Link to comment Share on other sites More sharing options...
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