Guest guest Posted January 8, 2009 Report Share Posted January 8, 2009 Hi everyone, My name is . I joined this forum awhile ago but have never posted anything. I pretty much just read a glean what good information you all have to offer. I was diagnosed with disease when I was 18, I am now 23. I have been on the Transplant List for about 2 years now. I am now expirencing brain fog immensely, and my hands and feet are extremely sensitive and hurt a lot of the time. I have cholesterol deposits on my hands also.The fatigue is getting greater and more frequent. I have had cholangitis attacks in the past. I am also extremely jaundice. My husband affectionately calls me his little lego person. I just had my labs drawn about 2 days ago, and I know my Meld score is 19 as of the moment without any added points. I was just curious as to what you all think of it and how soon do you think a transplant could get here based on these labs. These are all the Lab results that are out of range Bilirubin, Direct 8.2 Range < or = to .2 Bilirubin, Total 18.8 Range < or = to .2-1.2 Alkaline Phosphatase 1999 Range < or = to 33-115 AST 232 Range < or = to 10-30 ALT 243 Range < or = to 6-40 Thanks for your imput. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2009 Report Share Posted January 8, 2009 , I would talk to your doctor about trying some USRO. Its not as popular has it was because of a failed study in the use of high dose URSO, but a lot of us are still on it and find it crucial in keeping our LFT numbers down. I was diagnosed in 1989 but wasn't started on URSO until my numbers started to rise dramatically in 1999. Now 19 years later my numbers are better today than my first set of numbers just after diagnosis. Ian (52) PSC 89 Hi shaul,As of right now i am am on500mg of cipro 2x daily500mg of bactrim 1x daily500mg of flagly 1x daily200mg of Xifaxan 3x dailyplus folic acid, iron, calcium, and a multivitamin. I am really just curious as to where other people are stage wise in comparison to thier bloodwork. I had read on another post awhile back someone had put they were in stage four and their bloodwork was wayyyyyy less than what mine is and it scared me a little. I just have to keep reminded myself that we may all have the same disease but it presents it self differently in all of us.~ >> > Though I don't know the answers tp your question. You and your husband are in my thoughts and prayers. > Shaul> PSC UC > Sent via BlackBerry by AT & T> > Blood work > > > Hi everyone,> > My name is . I joined this forum awhile ago but have never > posted anything. I pretty much just read a glean what good > information you all have to offer. > > I was diagnosed with disease when I was 18, I am now 23. I have been > on the Transplant List for about 2 years now. I am now expirencing > brain fog immensely, and my hands and feet are extremely sensitive > and hurt a lot of the time. I have cholesterol deposits on my hands > also.The fatigue is getting greater and more frequent. I have had > cholangitis attacks in the past. I am also extremely jaundice. My > husband affectionately calls me his little lego person.> > I just had my labs drawn about 2 days ago, and I know my Meld score > is 19 as of the moment without any added points. I was just curious > as to what you all think of it and how soon do you think a transplant > could get here based on these labs. > > These are all the Lab results that are out of range> > Bilirubin, Direct 8.2 Range < or = to .2 > Bilirubin, Total 18.8 Range < or = to .2-1.2 > Alkaline Phosphatase 1999 Range < or = to 33-115> AST 232 Range < or = to 10-30> ALT 243 Range < or = to 6-40> > Thanks for your imput. > > -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2009 Report Share Posted January 8, 2009 , I would talk to your doctor about trying some USRO. Its not as popular has it was because of a failed study in the use of high dose URSO, but a lot of us are still on it and find it crucial in keeping our LFT numbers down. I was diagnosed in 1989 but wasn't started on URSO until my numbers started to rise dramatically in 1999. Now 19 years later my numbers are better today than my first set of numbers just after diagnosis. Ian (52) PSC 89 Hi shaul,As of right now i am am on500mg of cipro 2x daily500mg of bactrim 1x daily500mg of flagly 1x daily200mg of Xifaxan 3x dailyplus folic acid, iron, calcium, and a multivitamin. I am really just curious as to where other people are stage wise in comparison to thier bloodwork. I had read on another post awhile back someone had put they were in stage four and their bloodwork was wayyyyyy less than what mine is and it scared me a little. I just have to keep reminded myself that we may all have the same disease but it presents it self differently in all of us.~ >> > Though I don't know the answers tp your question. You and your husband are in my thoughts and prayers. > Shaul> PSC UC > Sent via BlackBerry by AT & T> > Blood work > > > Hi everyone,> > My name is . I joined this forum awhile ago but have never > posted anything. I pretty much just read a glean what good > information you all have to offer. > > I was diagnosed with disease when I was 18, I am now 23. I have been > on the Transplant List for about 2 years now. I am now expirencing > brain fog immensely, and my hands and feet are extremely sensitive > and hurt a lot of the time. I have cholesterol deposits on my hands > also.The fatigue is getting greater and more frequent. I have had > cholangitis attacks in the past. I am also extremely jaundice. My > husband affectionately calls me his little lego person.> > I just had my labs drawn about 2 days ago, and I know my Meld score > is 19 as of the moment without any added points. I was just curious > as to what you all think of it and how soon do you think a transplant > could get here based on these labs. > > These are all the Lab results that are out of range> > Bilirubin, Direct 8.2 Range < or = to .2 > Bilirubin, Total 18.8 Range < or = to .2-1.2 > Alkaline Phosphatase 1999 Range < or = to 33-115> AST 232 Range < or = to 10-30> ALT 243 Range < or = to 6-40> > Thanks for your imput. > > -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2009 Report Share Posted January 8, 2009 , I would talk to your doctor about trying some USRO. Its not as popular has it was because of a failed study in the use of high dose URSO, but a lot of us are still on it and find it crucial in keeping our LFT numbers down. I was diagnosed in 1989 but wasn't started on URSO until my numbers started to rise dramatically in 1999. Now 19 years later my numbers are better today than my first set of numbers just after diagnosis. Ian (52) PSC 89 Hi shaul,As of right now i am am on500mg of cipro 2x daily500mg of bactrim 1x daily500mg of flagly 1x daily200mg of Xifaxan 3x dailyplus folic acid, iron, calcium, and a multivitamin. I am really just curious as to where other people are stage wise in comparison to thier bloodwork. I had read on another post awhile back someone had put they were in stage four and their bloodwork was wayyyyyy less than what mine is and it scared me a little. I just have to keep reminded myself that we may all have the same disease but it presents it self differently in all of us.~ >> > Though I don't know the answers tp your question. You and your husband are in my thoughts and prayers. > Shaul> PSC UC > Sent via BlackBerry by AT & T> > Blood work > > > Hi everyone,> > My name is . I joined this forum awhile ago but have never > posted anything. I pretty much just read a glean what good > information you all have to offer. > > I was diagnosed with disease when I was 18, I am now 23. I have been > on the Transplant List for about 2 years now. I am now expirencing > brain fog immensely, and my hands and feet are extremely sensitive > and hurt a lot of the time. I have cholesterol deposits on my hands > also.The fatigue is getting greater and more frequent. I have had > cholangitis attacks in the past. I am also extremely jaundice. My > husband affectionately calls me his little lego person.> > I just had my labs drawn about 2 days ago, and I know my Meld score > is 19 as of the moment without any added points. I was just curious > as to what you all think of it and how soon do you think a transplant > could get here based on these labs. > > These are all the Lab results that are out of range> > Bilirubin, Direct 8.2 Range < or = to .2 > Bilirubin, Total 18.8 Range < or = to .2-1.2 > Alkaline Phosphatase 1999 Range < or = to 33-115> AST 232 Range < or = to 10-30> ALT 243 Range < or = to 6-40> > Thanks for your imput. > > -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 , I agree. I was put on Urso in 1990 when I was diagnosed and remained almost symptom free until 2007. My LFT’s remained really close to normal range during that period. I had no side-effects. I credit Urso for allowing me to live a normal life for so long. Joe From: [mailto: ] On Behalf Of Ian Cribb Sent: Thursday, January 08, 2009 10:36 PM To: Subject: Re: Re: Blood work , I would talk to your doctor about trying some USRO. Its not as popular has it was because of a failed study in the use of high dose URSO, but a lot of us are still on it and find it crucial in keeping our LFT numbers down. I was diagnosed in 1989 but wasn't started on URSO until my numbers started to rise dramatically in 1999. Now 19 years later my numbers are better today than my first set of numbers just after diagnosis. Ian (52) PSC 89 On 1/8/09, tbtravia <tbtravia (AT) yahoo (DOT) com> wrote: Hi shaul, As of right now i am am on 500mg of cipro 2x daily 500mg of bactrim 1x daily 500mg of flagly 1x daily 200mg of Xifaxan 3x daily plus folic acid, iron, calcium, and a multivitamin. I am really just curious as to where other people are stage wise in comparison to thier bloodwork. I had read on another post awhile back someone had put they were in stage four and their bloodwork was wayyyyyy less than what mine is and it scared me a little. I just have to keep reminded myself that we may all have the same disease but it presents it self differently in all of us. ~ > > > Though I don't know the answers tp your question. You and your husband are in my thoughts and prayers. > Shaul > PSC UC > Sent via BlackBerry by AT & T > > Blood work > > > Hi everyone, > > My name is . I joined this forum awhile ago but have never > posted anything. I pretty much just read a glean what good > information you all have to offer. > > I was diagnosed with disease when I was 18, I am now 23. I have been > on the Transplant List for about 2 years now. I am now expirencing > brain fog immensely, and my hands and feet are extremely sensitive > and hurt a lot of the time. I have cholesterol deposits on my hands > also.The fatigue is getting greater and more frequent. I have had > cholangitis attacks in the past. I am also extremely jaundice. My > husband affectionately calls me his little lego person. > > I just had my labs drawn about 2 days ago, and I know my Meld score > is 19 as of the moment without any added points. I was just curious > as to what you all think of it and how soon do you think a transplant > could get here based on these labs. > > These are all the Lab results that are out of range > > Bilirubin, Direct 8.2 Range < or = to .2 > Bilirubin, Total 18.8 Range < or = to .2-1.2 > Alkaline Phosphatase 1999 Range < or = to 33-115 > AST 232 Range < or = to 10-30 > ALT 243 Range < or = to 6-40 > > Thanks for your imput. > > -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 , I agree. I was put on Urso in 1990 when I was diagnosed and remained almost symptom free until 2007. My LFT’s remained really close to normal range during that period. I had no side-effects. I credit Urso for allowing me to live a normal life for so long. Joe From: [mailto: ] On Behalf Of Ian Cribb Sent: Thursday, January 08, 2009 10:36 PM To: Subject: Re: Re: Blood work , I would talk to your doctor about trying some USRO. Its not as popular has it was because of a failed study in the use of high dose URSO, but a lot of us are still on it and find it crucial in keeping our LFT numbers down. I was diagnosed in 1989 but wasn't started on URSO until my numbers started to rise dramatically in 1999. Now 19 years later my numbers are better today than my first set of numbers just after diagnosis. Ian (52) PSC 89 On 1/8/09, tbtravia <tbtravia (AT) yahoo (DOT) com> wrote: Hi shaul, As of right now i am am on 500mg of cipro 2x daily 500mg of bactrim 1x daily 500mg of flagly 1x daily 200mg of Xifaxan 3x daily plus folic acid, iron, calcium, and a multivitamin. I am really just curious as to where other people are stage wise in comparison to thier bloodwork. I had read on another post awhile back someone had put they were in stage four and their bloodwork was wayyyyyy less than what mine is and it scared me a little. I just have to keep reminded myself that we may all have the same disease but it presents it self differently in all of us. ~ > > > Though I don't know the answers tp your question. You and your husband are in my thoughts and prayers. > Shaul > PSC UC > Sent via BlackBerry by AT & T > > Blood work > > > Hi everyone, > > My name is . I joined this forum awhile ago but have never > posted anything. I pretty much just read a glean what good > information you all have to offer. > > I was diagnosed with disease when I was 18, I am now 23. I have been > on the Transplant List for about 2 years now. I am now expirencing > brain fog immensely, and my hands and feet are extremely sensitive > and hurt a lot of the time. I have cholesterol deposits on my hands > also.The fatigue is getting greater and more frequent. I have had > cholangitis attacks in the past. I am also extremely jaundice. My > husband affectionately calls me his little lego person. > > I just had my labs drawn about 2 days ago, and I know my Meld score > is 19 as of the moment without any added points. I was just curious > as to what you all think of it and how soon do you think a transplant > could get here based on these labs. > > These are all the Lab results that are out of range > > Bilirubin, Direct 8.2 Range < or = to .2 > Bilirubin, Total 18.8 Range < or = to .2-1.2 > Alkaline Phosphatase 1999 Range < or = to 33-115 > AST 232 Range < or = to 10-30 > ALT 243 Range < or = to 6-40 > > Thanks for your imput. > > -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 What is your INR and creatine lab results. Where you live can make a difference in when you are transplanted. I am sure you are talking to your transplant center. What was your last meld score and how long ago was it done? PSC 5/07 Listed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Take a look at your labs again please what is your creatine level - this is one that counts toward your MELD score and tells how your kidneys are working. Also look at your INR-this counts toward your MELD too, the numbers you gave are high and if your INR was 29 you would be in serious trouble for bleeding. Maybe you just have a blockage and that is why your billi is high. Has your doc suggested an ERCP or MRI to see what is going on? The other numbers you listed are not related to your MELD score. PSC 5/07 Stage IV Listed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Take a look at your labs again please what is your creatine level - this is one that counts toward your MELD score and tells how your kidneys are working. Also look at your INR-this counts toward your MELD too, the numbers you gave are high and if your INR was 29 you would be in serious trouble for bleeding. Maybe you just have a blockage and that is why your billi is high. Has your doc suggested an ERCP or MRI to see what is going on? The other numbers you listed are not related to your MELD score. PSC 5/07 Stage IV Listed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Take a look at your labs again please what is your creatine level - this is one that counts toward your MELD score and tells how your kidneys are working. Also look at your INR-this counts toward your MELD too, the numbers you gave are high and if your INR was 29 you would be in serious trouble for bleeding. Maybe you just have a blockage and that is why your billi is high. Has your doc suggested an ERCP or MRI to see what is going on? The other numbers you listed are not related to your MELD score. PSC 5/07 Stage IV Listed Quote Link to comment Share on other sites More sharing options...
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