Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 Maggie-The way my brother's doctors explained it to us:You remove the disease by replacing the liver, bile ducts etc. HOWEVER, since there is no rhyme or reason for the disease, it can come back. So, yes the disease is gone, but his body is still his, and therefore, it is possible to have a recurrence of the disease.. Simply because they don't know what causes the disease and since his body manifested it, just because we take away the disease, there is a chance his body could develop it again. Just something they have to tell you. There are many cases where patients do not develop PSC again. But it can happen.My brother was transplanted December 12, 2007. He is a picture of health today. As far as his liver transplant went, he was truly blessed. He is healthy FINALLY gained weight. I kept a blog of his story, you are welcome to go and read it, www.savedusty.blogspot.com. I do warn, there are some graphic pictures of his old liver on the blog.Good luck to you and . You have an amazing supportive group here that has been through everything in some way. in TexasBrother, , 32, PSC, tx 12-12-07Subject: transplant questionTo: Date: Friday, March 27, 2009, 3:29 PM Hi Everyone, I have a question about transplant. The transplant doctor told us that once gets transpanted he will no longer have PSC. They are going to do a complete transplant of liver and bile ducts. I noticed a lot of you have been transplanted. Do you still have PSC? Do you still have cholangitis attacks? Thanks and prayers to Everyone, Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 Maggie-The way my brother's doctors explained it to us:You remove the disease by replacing the liver, bile ducts etc. HOWEVER, since there is no rhyme or reason for the disease, it can come back. So, yes the disease is gone, but his body is still his, and therefore, it is possible to have a recurrence of the disease.. Simply because they don't know what causes the disease and since his body manifested it, just because we take away the disease, there is a chance his body could develop it again. Just something they have to tell you. There are many cases where patients do not develop PSC again. But it can happen.My brother was transplanted December 12, 2007. He is a picture of health today. As far as his liver transplant went, he was truly blessed. He is healthy FINALLY gained weight. I kept a blog of his story, you are welcome to go and read it, www.savedusty.blogspot.com. I do warn, there are some graphic pictures of his old liver on the blog.Good luck to you and . You have an amazing supportive group here that has been through everything in some way. in TexasBrother, , 32, PSC, tx 12-12-07Subject: transplant questionTo: Date: Friday, March 27, 2009, 3:29 PM Hi Everyone, I have a question about transplant. The transplant doctor told us that once gets transpanted he will no longer have PSC. They are going to do a complete transplant of liver and bile ducts. I noticed a lot of you have been transplanted. Do you still have PSC? Do you still have cholangitis attacks? Thanks and prayers to Everyone, Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 Maggie-The way my brother's doctors explained it to us:You remove the disease by replacing the liver, bile ducts etc. HOWEVER, since there is no rhyme or reason for the disease, it can come back. So, yes the disease is gone, but his body is still his, and therefore, it is possible to have a recurrence of the disease.. Simply because they don't know what causes the disease and since his body manifested it, just because we take away the disease, there is a chance his body could develop it again. Just something they have to tell you. There are many cases where patients do not develop PSC again. But it can happen.My brother was transplanted December 12, 2007. He is a picture of health today. As far as his liver transplant went, he was truly blessed. He is healthy FINALLY gained weight. I kept a blog of his story, you are welcome to go and read it, www.savedusty.blogspot.com. I do warn, there are some graphic pictures of his old liver on the blog.Good luck to you and . You have an amazing supportive group here that has been through everything in some way. in TexasBrother, , 32, PSC, tx 12-12-07Subject: transplant questionTo: Date: Friday, March 27, 2009, 3:29 PM Hi Everyone, I have a question about transplant. The transplant doctor told us that once gets transpanted he will no longer have PSC. They are going to do a complete transplant of liver and bile ducts. I noticed a lot of you have been transplanted. Do you still have PSC? Do you still have cholangitis attacks? Thanks and prayers to Everyone, Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 I had my transplant 10-17-2007. At this time I am PSC free. My Transplant Center changes the internal plumbing a little bit in order to reduce the risk of recurrence of PSC. A loop of small bowel is attached directly to the new bile duct using Roux-en-Y. According to various sources the rate of recurrent PSC after transplant is somewhere between 2% and 40%. My original research, just prior to my transplant, indicated that it was around 12%, but since then I have found conflicting numbers. I am taking no medication for PSC and have textbook lab values. I do not have cholangitis attacks, URQ pain, or any other PSC symptom. From: [mailto: ] On Behalf Of Maggie Roussel Sent: Friday, March 27, 2009 3:29 PM To: Subject: transplant question Hi Everyone, I have a question about transplant. The transplant doctor told us that once gets transpanted he will no longer have PSC. They are going to do a complete transplant of liver and bile ducts. I noticed a lot of you have been transplanted. Do you still have PSC? Do you still have cholangitis attacks? Thanks and prayers to Everyone, Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 My transplant center says that to avoid a reoccurrence they will do a low dose of prednisone for the rest of my life… Does anyone know how long it takes to reoccur if it is going to? ============ According to various sources the rate of recurrent PSC after transplant is somewhere between 2% and 40%. My original research, just prior to my transplant, indicated that it was around 12%, but since then I have found conflicting numbers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 My transplant center says that to avoid a reoccurrence they will do a low dose of prednisone for the rest of my life… Does anyone know how long it takes to reoccur if it is going to? ============ According to various sources the rate of recurrent PSC after transplant is somewhere between 2% and 40%. My original research, just prior to my transplant, indicated that it was around 12%, but since then I have found conflicting numbers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 Thanks to both of you for the question and the answer...I've been meaning to ask that same questions.....but fatigue and Brain fog for some reason....made me forget... I'm taking this weekend off to sleep! Don B. PSC / UC 11-08 From: Maggie Roussel <maggier111763@ yahoo.com>Subject: transplant questionTo: @ yahoogroups. comDate: Friday, March 27, 2009, 3:29 PM Hi Everyone, I have a question about transplant. The transplant doctor told us that once gets transpanted he will no longer have PSC. They are going to do a complete transplant of liver and bile ducts. I noticed a lot of you have been transplanted. Do you still have PSC? Do you still have cholangitis attacks? Thanks and prayers to Everyone, Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 Thanks to both of you for the question and the answer...I've been meaning to ask that same questions.....but fatigue and Brain fog for some reason....made me forget... I'm taking this weekend off to sleep! Don B. PSC / UC 11-08 From: Maggie Roussel <maggier111763@ yahoo.com>Subject: transplant questionTo: @ yahoogroups. comDate: Friday, March 27, 2009, 3:29 PM Hi Everyone, I have a question about transplant. The transplant doctor told us that once gets transpanted he will no longer have PSC. They are going to do a complete transplant of liver and bile ducts. I noticed a lot of you have been transplanted. Do you still have PSC? Do you still have cholangitis attacks? Thanks and prayers to Everyone, Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 Thanks to both of you for the question and the answer...I've been meaning to ask that same questions.....but fatigue and Brain fog for some reason....made me forget... I'm taking this weekend off to sleep! Don B. PSC / UC 11-08 From: Maggie Roussel <maggier111763@ yahoo.com>Subject: transplant questionTo: @ yahoogroups. comDate: Friday, March 27, 2009, 3:29 PM Hi Everyone, I have a question about transplant. The transplant doctor told us that once gets transpanted he will no longer have PSC. They are going to do a complete transplant of liver and bile ducts. I noticed a lot of you have been transplanted. Do you still have PSC? Do you still have cholangitis attacks? Thanks and prayers to Everyone, Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 > >> Does anyone know how long it takes to reoccur if it is going to? > I do not know of a specific time line for PSC to reoccur. I had my transplant in May 2006, and was dx with the return of PSC in Nov 2008. I was so surprised that this could happen two and a half years post transplant. My transplant team said they were concerned that it returned that soon but there was not an explanation as to what the timing should be. I can only encourage anyone who is pre-transplant to take one day at a time and when it comes time for transplant not to allow yourself to dwell in the " what ifs. " It drives you crazy and takes away from the LIFE that you have been waiting to live. I never thought of PSC returning, I made sure I never said " my disease " following transplant, and yes when they told me it returned I was devastated. I had to get to point of acceptance and enjoying life and I am happy to say that since stopping working three months ago and eliminating any stressful factors in my life, I took a blood test today and three of the four liver enzymes are normal for the first time in EIGHT years!! My Alk Phos is at 102 and needs to be a minimum of 91, so I am happy with 102 compared to the 600 it was in November. I am taking urso again, I do not like that idea but I take it. Living with PSC for five years and being so sick, it just is not worth the worry of rPSC when it comes to transplant time. Life is so great following transplant and you feel so happy and grateful that negative and now I know....stress, can be just as bad on your body. I pray all goes well, enjoy each and every day to the fullest!! Tammy PSC 01, TX 5-4-06, UC 11-08. rPSC 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2009 Report Share Posted March 27, 2009 > >> Does anyone know how long it takes to reoccur if it is going to? > I do not know of a specific time line for PSC to reoccur. I had my transplant in May 2006, and was dx with the return of PSC in Nov 2008. I was so surprised that this could happen two and a half years post transplant. My transplant team said they were concerned that it returned that soon but there was not an explanation as to what the timing should be. I can only encourage anyone who is pre-transplant to take one day at a time and when it comes time for transplant not to allow yourself to dwell in the " what ifs. " It drives you crazy and takes away from the LIFE that you have been waiting to live. I never thought of PSC returning, I made sure I never said " my disease " following transplant, and yes when they told me it returned I was devastated. I had to get to point of acceptance and enjoying life and I am happy to say that since stopping working three months ago and eliminating any stressful factors in my life, I took a blood test today and three of the four liver enzymes are normal for the first time in EIGHT years!! My Alk Phos is at 102 and needs to be a minimum of 91, so I am happy with 102 compared to the 600 it was in November. I am taking urso again, I do not like that idea but I take it. Living with PSC for five years and being so sick, it just is not worth the worry of rPSC when it comes to transplant time. Life is so great following transplant and you feel so happy and grateful that negative and now I know....stress, can be just as bad on your body. I pray all goes well, enjoy each and every day to the fullest!! Tammy PSC 01, TX 5-4-06, UC 11-08. rPSC 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 Anita, I was on Prednisone for seven months post-transplant, now just on Prograf and Cellcept. I have not found statistics on when PSC might return. I am going to live each day to the fullest and hope it doesn’t return. I agree with Tammy, stress can be a negative factor. The good news is, no matter whose data you take concerning return of PSC, it is better than 50-50 it will not return. Every time my mind starts to wander in the wrong direction, I remember this. From: [mailto: ] On Behalf Of Anita Oakley Sent: Friday, March 27, 2009 8:05 PM To: Subject: RE: transplant question My transplant center says that to avoid a reoccurrence they will do a low dose of prednisone for the rest of my life… Does anyone know how long it takes to reoccur if it is going to? ============ According to various sources the rate of recurrent PSC after transplant is somewhere between 2% and 40%. My original research, just prior to my transplant, indicated that it was around 12%, but since then I have found conflicting numbers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 Anita, I was on Prednisone for seven months post-transplant, now just on Prograf and Cellcept. I have not found statistics on when PSC might return. I am going to live each day to the fullest and hope it doesn’t return. I agree with Tammy, stress can be a negative factor. The good news is, no matter whose data you take concerning return of PSC, it is better than 50-50 it will not return. Every time my mind starts to wander in the wrong direction, I remember this. From: [mailto: ] On Behalf Of Anita Oakley Sent: Friday, March 27, 2009 8:05 PM To: Subject: RE: transplant question My transplant center says that to avoid a reoccurrence they will do a low dose of prednisone for the rest of my life… Does anyone know how long it takes to reoccur if it is going to? ============ According to various sources the rate of recurrent PSC after transplant is somewhere between 2% and 40%. My original research, just prior to my transplant, indicated that it was around 12%, but since then I have found conflicting numbers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 Stress is something that really worries me. I work for Microsoft and have just started taking Excel support cases again. They can be really high stress. I am already feeling it. So I wonder what that’s doing to me pre-transplant… Not gonna do this post-transplant. I’ll have to stay lower stress. From: [mailto: ] On Behalf Of Joe Berry Sent: Saturday, March 28, 2009 9:01 AM To: Subject: RE: transplant question Anita, I was on Prednisone for seven months post-transplant, now just on Prograf and Cellcept. I have not found statistics on when PSC might return. I am going to live each day to the fullest and hope it doesn’t return. I agree with Tammy, stress can be a negative factor. The good news is, no matter whose data you take concerning return of PSC, it is better than 50-50 it will not return. Every time my mind starts to wander in the wrong direction, I remember this. From: [mailto: ] On Behalf Of Anita Oakley Sent: Friday, March 27, 2009 8:05 PM To: Subject: RE: transplant question My transplant center says that to avoid a reoccurrence they will do a low dose of prednisone for the rest of my life… Does anyone know how long it takes to reoccur if it is going to? ============ According to various sources the rate of recurrent PSC after transplant is somewhere between 2% and 40%. My original research, just prior to my transplant, indicated that it was around 12%, but since then I have found conflicting numbers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 Stress is something that really worries me. I work for Microsoft and have just started taking Excel support cases again. They can be really high stress. I am already feeling it. So I wonder what that’s doing to me pre-transplant… Not gonna do this post-transplant. I’ll have to stay lower stress. From: [mailto: ] On Behalf Of Joe Berry Sent: Saturday, March 28, 2009 9:01 AM To: Subject: RE: transplant question Anita, I was on Prednisone for seven months post-transplant, now just on Prograf and Cellcept. I have not found statistics on when PSC might return. I am going to live each day to the fullest and hope it doesn’t return. I agree with Tammy, stress can be a negative factor. The good news is, no matter whose data you take concerning return of PSC, it is better than 50-50 it will not return. Every time my mind starts to wander in the wrong direction, I remember this. From: [mailto: ] On Behalf Of Anita Oakley Sent: Friday, March 27, 2009 8:05 PM To: Subject: RE: transplant question My transplant center says that to avoid a reoccurrence they will do a low dose of prednisone for the rest of my life… Does anyone know how long it takes to reoccur if it is going to? ============ According to various sources the rate of recurrent PSC after transplant is somewhere between 2% and 40%. My original research, just prior to my transplant, indicated that it was around 12%, but since then I have found conflicting numbers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 Stress is something that really worries me. I work for Microsoft and have just started taking Excel support cases again. They can be really high stress. I am already feeling it. So I wonder what that’s doing to me pre-transplant… Not gonna do this post-transplant. I’ll have to stay lower stress. From: [mailto: ] On Behalf Of Joe Berry Sent: Saturday, March 28, 2009 9:01 AM To: Subject: RE: transplant question Anita, I was on Prednisone for seven months post-transplant, now just on Prograf and Cellcept. I have not found statistics on when PSC might return. I am going to live each day to the fullest and hope it doesn’t return. I agree with Tammy, stress can be a negative factor. The good news is, no matter whose data you take concerning return of PSC, it is better than 50-50 it will not return. Every time my mind starts to wander in the wrong direction, I remember this. From: [mailto: ] On Behalf Of Anita Oakley Sent: Friday, March 27, 2009 8:05 PM To: Subject: RE: transplant question My transplant center says that to avoid a reoccurrence they will do a low dose of prednisone for the rest of my life… Does anyone know how long it takes to reoccur if it is going to? ============ According to various sources the rate of recurrent PSC after transplant is somewhere between 2% and 40%. My original research, just prior to my transplant, indicated that it was around 12%, but since then I have found conflicting numbers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 > >> Does anyone know how long it takes to reoccur if it is going to? > > > > > I do not know of a specific time line for PSC to reoccur. I had my transplant in May 2006, and was dx with the return of PSC in Nov 2008. I was so surprised that this could happen two and a half years post transplant. My transplant team said they were concerned that it returned that soon but there was not an explanation as to what the timing should be. >>>>> This sounds a lot alike s posting I found on the J-pouch group..a person had been told that having a pouch created was doomed to fail--all pouchs fail. I can tell you for anyone here with a pouch that there is no specific length of time until a pouch fails. I have had mine for over 25 years, and after a scope was told that my pouch looks like brand new. I also agree in the philosophy to just live one day at a time and don't let PSC run your life. I was diagnosed June 2008. And did not let it ruin my life plans. I have since started nursing school in January 2009, and plan to continue life as if I don't have PSC, except to take my meds, eat healthy, and get the tests that my GI wants me to get. I will have ERCPs done in May and December of both this year 2009 and 2010, just so that I can make sure that I don't have things building up in my duct that could cause me to have a cholangitis attack while I in school. My GI and I are just being proactive to make sure that I can make it through school and hopefully not have any attacks. After I was diagnosed in June of last year I had a cholangitis attack in August, September and October. But once we got my URSO at the right dose and I make sure that I drink lots of water and eat healthy. I have not had any attacks. I will continue to live my live as if I don't have PSC, and not worry about any problems including my possible need of a transplant until that time comes. Just my two cents, Beth B--Thornton,CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 > >> Does anyone know how long it takes to reoccur if it is going to? > > > > > I do not know of a specific time line for PSC to reoccur. I had my transplant in May 2006, and was dx with the return of PSC in Nov 2008. I was so surprised that this could happen two and a half years post transplant. My transplant team said they were concerned that it returned that soon but there was not an explanation as to what the timing should be. >>>>> This sounds a lot alike s posting I found on the J-pouch group..a person had been told that having a pouch created was doomed to fail--all pouchs fail. I can tell you for anyone here with a pouch that there is no specific length of time until a pouch fails. I have had mine for over 25 years, and after a scope was told that my pouch looks like brand new. I also agree in the philosophy to just live one day at a time and don't let PSC run your life. I was diagnosed June 2008. And did not let it ruin my life plans. I have since started nursing school in January 2009, and plan to continue life as if I don't have PSC, except to take my meds, eat healthy, and get the tests that my GI wants me to get. I will have ERCPs done in May and December of both this year 2009 and 2010, just so that I can make sure that I don't have things building up in my duct that could cause me to have a cholangitis attack while I in school. My GI and I are just being proactive to make sure that I can make it through school and hopefully not have any attacks. After I was diagnosed in June of last year I had a cholangitis attack in August, September and October. But once we got my URSO at the right dose and I make sure that I drink lots of water and eat healthy. I have not had any attacks. I will continue to live my live as if I don't have PSC, and not worry about any problems including my possible need of a transplant until that time comes. Just my two cents, Beth B--Thornton,CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2009 Report Share Posted March 29, 2009 Beth, I'm new to the site and was diagnosed with PSC in Dec 2008 right before I had a colectomy. What isa a cholangitis attack?? In dec while in the hosp my ALK was 220, Bilirubin ok, and ALT a little high(80). I have no symptoms and feel fine. Keep m,yself in good shape, eat right, etc.sdMy last blood. Jusyt wondering thanks, Dundee Tom To: Sent: Saturday, March 28, 2009 8:48:43 PMSubject: Re: transplant question > >> Does anyone know how long it takes to reoccur if it is going to? > > > > > I do not know of a specific time line for PSC to reoccur. I had my transplant in May 2006, and was dx with the return of PSC in Nov 2008. I was so surprised that this could happen two and a half years post transplant. My transplant team said they were concerned that it returned that soon but there was not an explanation as to what the timing should be. >>>>>This sounds a lot alike s posting I found on the J-pouch group..a person had been told that having a pouch created was doomed to fail--all pouchs fail. I can tell you for anyone here with a pouch that there is no specific length of time until a pouch fails. I have had mine for over 25 years, and after a scope was told that my pouch looks like brand new.I also agree in the philosophy to just live one day at a time and don't let PSC run your life. I was diagnosed June 2008. And did not let it ruin my life plans. I have since started nursing school in January 2009, and plan to continue life as if I don't have PSC, except to take my meds, eat healthy, and get the tests that my GI wants me to get. I will have ERCPs done in May and December of both this year 2009 and 2010, just so that I can make sure that I don't have things building up in my duct that could cause me to have a cholangitis attack while I in school. My GI and I are just being proactive to make sure that I can make it through school and hopefully not have any attacks. After I was diagnosed in June of last year I had a cholangitis attack in August, September and October. But once we got my URSO at the right dose and I make sure that I drink lots of water and eat healthy. I have not had any attacks.I will continue to live my live as if I don't have PSC, and not worry about any problems including my possible need of a transplant until that time comes.Just my two cents,Beth B--Thornton, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2009 Report Share Posted March 29, 2009 Beth, I'm new to the site and was diagnosed with PSC in Dec 2008 right before I had a colectomy. What isa a cholangitis attack?? In dec while in the hosp my ALK was 220, Bilirubin ok, and ALT a little high(80). I have no symptoms and feel fine. Keep m,yself in good shape, eat right, etc.sdMy last blood. Jusyt wondering thanks, Dundee Tom To: Sent: Saturday, March 28, 2009 8:48:43 PMSubject: Re: transplant question > >> Does anyone know how long it takes to reoccur if it is going to? > > > > > I do not know of a specific time line for PSC to reoccur. I had my transplant in May 2006, and was dx with the return of PSC in Nov 2008. I was so surprised that this could happen two and a half years post transplant. My transplant team said they were concerned that it returned that soon but there was not an explanation as to what the timing should be. >>>>>This sounds a lot alike s posting I found on the J-pouch group..a person had been told that having a pouch created was doomed to fail--all pouchs fail. I can tell you for anyone here with a pouch that there is no specific length of time until a pouch fails. I have had mine for over 25 years, and after a scope was told that my pouch looks like brand new.I also agree in the philosophy to just live one day at a time and don't let PSC run your life. I was diagnosed June 2008. And did not let it ruin my life plans. I have since started nursing school in January 2009, and plan to continue life as if I don't have PSC, except to take my meds, eat healthy, and get the tests that my GI wants me to get. I will have ERCPs done in May and December of both this year 2009 and 2010, just so that I can make sure that I don't have things building up in my duct that could cause me to have a cholangitis attack while I in school. My GI and I are just being proactive to make sure that I can make it through school and hopefully not have any attacks. After I was diagnosed in June of last year I had a cholangitis attack in August, September and October. But once we got my URSO at the right dose and I make sure that I drink lots of water and eat healthy. I have not had any attacks.I will continue to live my live as if I don't have PSC, and not worry about any problems including my possible need of a transplant until that time comes.Just my two cents,Beth B--Thornton, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2009 Report Share Posted March 29, 2009 Beth, I'm new to the site and was diagnosed with PSC in Dec 2008 right before I had a colectomy. What isa a cholangitis attack?? In dec while in the hosp my ALK was 220, Bilirubin ok, and ALT a little high(80). I have no symptoms and feel fine. Keep m,yself in good shape, eat right, etc.sdMy last blood. Jusyt wondering thanks, Dundee Tom To: Sent: Saturday, March 28, 2009 8:48:43 PMSubject: Re: transplant question > >> Does anyone know how long it takes to reoccur if it is going to? > > > > > I do not know of a specific time line for PSC to reoccur. I had my transplant in May 2006, and was dx with the return of PSC in Nov 2008. I was so surprised that this could happen two and a half years post transplant. My transplant team said they were concerned that it returned that soon but there was not an explanation as to what the timing should be. >>>>>This sounds a lot alike s posting I found on the J-pouch group..a person had been told that having a pouch created was doomed to fail--all pouchs fail. I can tell you for anyone here with a pouch that there is no specific length of time until a pouch fails. I have had mine for over 25 years, and after a scope was told that my pouch looks like brand new.I also agree in the philosophy to just live one day at a time and don't let PSC run your life. I was diagnosed June 2008. And did not let it ruin my life plans. I have since started nursing school in January 2009, and plan to continue life as if I don't have PSC, except to take my meds, eat healthy, and get the tests that my GI wants me to get. I will have ERCPs done in May and December of both this year 2009 and 2010, just so that I can make sure that I don't have things building up in my duct that could cause me to have a cholangitis attack while I in school. My GI and I are just being proactive to make sure that I can make it through school and hopefully not have any attacks. After I was diagnosed in June of last year I had a cholangitis attack in August, September and October. But once we got my URSO at the right dose and I make sure that I drink lots of water and eat healthy. I have not had any attacks.I will continue to live my live as if I don't have PSC, and not worry about any problems including my possible need of a transplant until that time comes.Just my two cents,Beth B--Thornton, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2009 Report Share Posted March 29, 2009 > > Beth, > > I'm new to the site and was diagnosed with PSC in Dec 2008 right before I had a colectomy. What isa a cholangitis attack?? In dec while in the hosp my ALK was 220, Bilirubin ok,  and ALT a little high(80). I have no symptoms and feel fine. Keep m,yself in good shape, eat right, etc.sdMy last blood. Jusyt wondering > > thanks, Dundee Tom > > For me a cholangitis attack is when my commone bile duct gets clogged up (mine is usally with sludge or tiny stones. The only lab that I know is high for me is usually my bilirubin--due to the fact that everytime I have had an attack at least my sclera in my eyes starts to turn yellow, 2 time though I was yellow all over. When I feel an attack coming on I get nauseau, vomiting, fever (about 101 or so), chills that are just the worst I have had--shake from head to toe with teeth chattering--even under 4 heavy blankets. RUQ pain that is about an 8/10. that can radiate up to my shoulder and across my back. When my GI does an ERCP he finds the blockage and clears it, and then I can start eating clears again. Until the blockage is cleared I am NPO (nothing by mouth not even water or ice chips). After my last attack he placed a stent that he removed a month later, that was actually starting to plug with sludge so that is when he decide to up my URSO to 1500 (500 3 times daily), and things seem to have settled down now. Now for me it is just to get through the stress of my first semester of nursing school. halfway there just seems a long way off....Yeah I know that I need to try to keep my stress levels down. Beth B Thornton,CO Quote Link to comment Share on other sites More sharing options...
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