Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Hi... I am new here. I was diagnosed with sclerosing cholangitis back in 1994 and I never really took anything for it. I am now on 1500 mg of Urso every day and I have had several ERCP's in the last year. (Almost 1 every 2 - 3 months) I am just looking to hear stories from people who are dealing with the same things as I. How do you keep your energy up? Do you stick to a special diet? Have you had a transplant? How did you feel before and after? Anything would be very helpful. I don't know anyone else who deals with this sort of thing and I constantly have people assume that since I have a liver disease that I am an alcoholic or a drug addict. It is very frustrating. Thanks, Nikky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 Nikky, Welcome to the group. You will find many stories. Some have had transplants and are doing great. It does seem that once someone has a transplant and are doing well they tend not to stay in contact as much thru this group, but there is a group for those who are post transplant. On the other hand if they hare having issues they seem to reappear and need/want the support again. I tell people I have a disease of the bile ducts, and that has resulted is liver disease. You will find the group very helpful and informative, but remember each person progress differently and each person deals with having PSC differently,if they are the caregiver or the person with the disease. Good luck, PSC 5/07 Listed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 Nikky, Welcome to the group. You will find many stories. Some have had transplants and are doing great. It does seem that once someone has a transplant and are doing well they tend not to stay in contact as much thru this group, but there is a group for those who are post transplant. On the other hand if they hare having issues they seem to reappear and need/want the support again. I tell people I have a disease of the bile ducts, and that has resulted is liver disease. You will find the group very helpful and informative, but remember each person progress differently and each person deals with having PSC differently,if they are the caregiver or the person with the disease. Good luck, PSC 5/07 Listed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 Nikki I was dx in 1981, saw a doc regularly with blood tests and liver studies done 4 times a year. I didn't follow and special diet, just did what felt right, went for 16 years before needing to see the transplant team at University of Michigan. Got sicker and had several infections, acsites and ulcerative cholitis and finally a transplant in 2002. During that time when I talked about my liver disease, I would usually say "I have a bum liver and I didn't get it by going out one night and being stupid." People who were interested would ask some question and then I would explain about bile ducts and scarring and liver transplants. Once I was diagnosed, I never drank alchohol so my friends and family knew I didn't have a drinking problem. I also mention that it is a rare disease and no body really knows how I got it or how to treat it except with a liver transplant. People who are interested will talk about it and those who are not, will quickly change the topic. Life after tx is good. Each person manages differently. Medicare paid for my tx after I went on disability and continues to cover my immunosuppresents. I have stayed on disability to keep my other coverage. I don't have the level of energy and I tire easily, but its Ok. You will hear other stories and get advice. Mine is to find doctors who know about PSC and get connected with a transplant center, so they can begin to monitor you and the progression of your PSC. Take Care MizKit Get the Moviefone Toolbar. Showtimes, theaters, movie news, more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2008 Report Share Posted June 24, 2008 So, how did you know that you needed a transplant after 21 years ? Did the symptoms change. What signs were there that you were degressing? I am always so worried that they are not watching my son close enough and dismissing his pain from time to time. I know Albumin and Calcium, platelets are a factor besides LFT's, but any thing else that was an indication for y ou...? Please share. At Your Service, Stevie OStos sgedgaud@... cmp12305@... cmp12305@... Sent by: 06/21/2008 09:25 AM Please respond to To cc Subject Re: Sclerosing Cholangitis Nikki I was dx in 1981, saw a doc regularly with blood tests and liver studies done 4 times a year. I didn't follow and special diet, just did what felt right, went for 16 years before needing to see the transplant team at University of Michigan. Got sicker and had several infections, acsites and ulcerative cholitis and finally a transplant in 2002. During that time when I talked about my liver disease, I would usually say " I have a bum liver and I didn't get it by going out one night and being stupid. " People who were interested would ask some question and then I would explain about bile ducts and scarring and liver transplants. Once I was diagnosed, I never drank alchohol so my friends and family knew I didn't have a drinking problem. I also mention that it is a rare disease and no body really knows how I got it or how to treat it except with a liver transplant. People who are interested will talk about it and those who are not, will quickly change the topic. Life after tx is good. Each person manages differently. Medicare paid for my tx after I went on disability and continues to cover my immunosuppresents. I have stayed on disability to keep my other coverage. I don't have the level of energy and I tire easily, but its Ok. You will hear other stories and get advice. Mine is to find doctors who know about PSC and get connected with a transplant center, so they can begin to monitor you and the progression of your PSC. Take Care MizKit Get the Moviefone Toolbar. Showtimes, theaters, movie news, more! Quote Link to comment Share on other sites More sharing options...
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