Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Hi Dawn, Welcome to the group. Right now you seem to be taking the appropriate medications. At first your GI doctor will work with your internist in treating this but eventually they will probably send you to a liver specialist. My husband Phil has had UC for 30 years and was diagnosed with PSC 12/98. He had 4 consecutive bouts with cholangitis where he ran a fever (over 101) and turned jandiced. (The best place to check for Jaundice is in the whites of the eyes). He can or cannot have some pain associated with it. Most of his pain came from a gallbladder full of stones. (That was removed) but he did have one more attack since. He now gets on and off pain between his shoulder blades that moves up his neck to his head. More people complain of URQ(upper right quadrant) pain though. Usually the day before the attach of cholangitis (infection of the bile duct) he just feels real UCKY as he would say and I can tell by the expression on his face. These reoccuring infections can be very serious and sometimes deadly so that is why he was referred to the liver specialist and has gone through the testing in order to be put on a TX (transplant list). You have to be on the list for quite some time before receiving a transplant. Right now the worst thing for him is that he gets fatigued very easily. He has a hard time getting up in the morning and has to rest by afternoon. He started out on State disability which has gone into Social Security Disability (If he had a job that he had been on for a number of years they would probably work around him but he lost his job a month before he was DX(diagnosed) so finding a job at 56, when you can't work a full day and never know when you're going to be tired or at the doctors or even in the hospital has made it impossible to look for work. He is trying to start a home-based business that he can work at when he feels like it. Others in the group have been able to maintain their jobs even while being very sick. When he gets a cholangitis attack we have found that the best thing to do is get to ER and have the GI contacted. They admit him and give he about 3 days of IV antibiotics and that seems to do the trick. He has been infection free since March 23rd. Also the doctors feel that he has had this disease for at least 10 years by the fact that he bile ducts are so constricted. His liver seems to be okay so far. Sorry to be so lengthy. Hope this helps. I find that Phil seems to have more of your husbands attitude. Like if you don't think about it, it will go away. You'll get plenty of love, support and understanding from this group. Peg, wife of Phil (56), UC 30 yrs, Dx PSC 12/98, working toward listing, Santa Clarita, CA dscala1193@... wrote: > Hello - > > I am a new member to this group and would like to give you some info > about myself. > > I am 29 yrs old and live in NYC. I was diagnosed with PSC almost a > year ago, shortly after the birth of my 1st child. I really didn't > take this too seriously until recently when I started doing research on > the disease. I think the doc who diagnosed me " softened " the blow a > little too much when he told me about it. > > I also have ulcerative colitis (for about 10 yrs). I am taking Asacol > for the UC and Actigall for the PSC. I get my liver function (blood > test) every three months, and so far they have been normal. > > I joined this group to get more information about the disease and > treatments. I would like to know what are the symptoms others are > experiencing and what treatments you are using. Also, I would like to > know if anyone knows of specialists in my area (I currently am seeing > just my gastroenterologist). > > I also joined for the support. It is hard to talk about this disease > with my family because they don't understand what I am going through. > Also, I think my husband downplays the disease becasue he doesn't want > to deal with it. > > Thanks for listening and I appreciate any info you can give me. > Dawn. > > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Hi Dawn - We are from Staten Island, and my husband was diagnosed with PSC last year. He sees Dr. Hillel Tobias, (Concorde Medical Group on East 30th Street and Third) who is a hepatologist affiliated with NYU. We have been very satisfied with his services so far. He has been up front with any information we request. As far are softening the blow, we had the exact same experience with the gastroenterologist we were seeing here on the island, it was as if he didn't want to actually come out with the exact diagnosis, or the details associated with it, and like yourself I did my own research to find out the facts. That was when we decided to go into Manhattan to a liver specialist, and we were referred to Dr. Tobias by a friend of my husband's at work. He has been kind and patient with us, and I feel comfortable that for now at least my husband is getting the best care we could find. A friend of mine whose husband was transplanted sees a hepatologist at Mt. Sinai, I think his name is Bodenheimer, but I may be wrong. Our insurance did not cover the Mt. Sinai docs. In any event, this group will help you alot as far as practical information and support from people who are going through the same experiences. Please feel free to e-mail me personally @ rnurse987@... for any additional info on Dr. Tobias, if you wish. Welcome to the group. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Dawn Welcome to our group... My son Tyler who will be 17 next week has PSC,AIH,Crohns and Rhuematoid Arthritis...This is a good place for info and support...You will learn much more here than any docs office...although Ty's docs at CHOP are great . It is really benificial to talk to people who are like you...I even get to talk to other moms going thru this with their kids....We need alot of support.... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Dawn Welcome to our group... My son Tyler who will be 17 next week has PSC,AIH,Crohns and Rhuematoid Arthritis...This is a good place for info and support...You will learn much more here than any docs office...although Ty's docs at CHOP are great . It is really benificial to talk to people who are like you...I even get to talk to other moms going thru this with their kids....We need alot of support.... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Dawn, Welcome to the group. Although, I'm sorry to hear that you have this disease, I'm glad that you found us, and hope that you will be very happy here. I am also seeing a gastroenterologist for this disease, and it seems to be going really well. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Dawn, Welcome to the group. Although, I'm sorry to hear that you have this disease, I'm glad that you found us, and hope that you will be very happy here. I am also seeing a gastroenterologist for this disease, and it seems to be going really well. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Dawn, Welcome to the group. Although, I'm sorry to hear that you have this disease, I'm glad that you found us, and hope that you will be very happy here. I am also seeing a gastroenterologist for this disease, and it seems to be going really well. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Hi Dawn, You have come to the right place. I just joined this group a few weeks ago and they have been wonderful. I am 34, was diagnosed with PSC in 1997. I will be starting the workup to be placed on the tx list. I get alot of nausea, upper right quadrant pain, fatigue and back pain usually near my shoulder blades. My liver at this time is working well but my biliary ducts are a real mess. I also take Actigall. My doctor(a liver specialist) told me 2 years ago that this disease could take years to progress. My disease has moved rather quickly though. It is an unpredictable disease. The best thing for you to do is to be educated and to know what to look for so you are starting out on the right foot. Good Luck. PSC97 > >Reply-To: egroups >To: egroups >Subject: Re: New Member >Date: Sun, 03 Oct 1999 20:21:25 -0700 > >Hi Dawn, >Welcome to the group. Right now you seem to be taking the appropriate >medications. At first your GI doctor will work with your internist in >treating this but eventually they will probably send you to a liver >specialist. My husband Phil has had UC for 30 years and was diagnosed with >PSC 12/98. He had 4 consecutive bouts with cholangitis where he ran a >fever >(over 101) and turned jandiced. (The best place to check for Jaundice is in >the whites of the eyes). He can or cannot have some pain associated with >it. Most of his pain came from a gallbladder full of stones. (That was >removed) but he did have one more attack since. > >He now gets on and off pain between his shoulder blades that moves up his >neck to his head. More people complain of URQ(upper right quadrant) pain >though. Usually the day before the attach of cholangitis (infection of the >bile duct) he just feels real UCKY as he would say and I can tell by the >expression on his face. These reoccuring infections can be very serious >and >sometimes deadly so that is why he was referred to the liver specialist and >has gone through the testing in order to be put on a TX (transplant list). >You have to be on the list for quite some time before receiving a >transplant. > >Right now the worst thing for him is that he gets fatigued very easily. He >has a hard time getting up in the morning and has to rest by afternoon. He >started out on State disability which has gone into Social Security >Disability (If he had a job that he had been on for a number of years they >would probably work around him but he lost his job a month before he was >DX(diagnosed) so finding a job at 56, when you can't work a full day and >never know when you're going to be tired or at the doctors or even in the >hospital has made it impossible to look for work. He is trying to start a >home-based business that he can work at when he feels like it. Others in >the group have been able to maintain their jobs even while being very sick. > >When he gets a cholangitis attack we have found that the best thing to do >is >get to ER and have the GI contacted. They admit him and give he about 3 >days of IV antibiotics and that seems to do the trick. He has been >infection free since March 23rd. Also the doctors feel that he has had >this >disease for at least 10 years by the fact that he bile ducts are so >constricted. His liver seems to be okay so far. > >Sorry to be so lengthy. Hope this helps. I find that Phil seems to have >more of your husbands attitude. Like if you don't think about it, it will >go away. You'll get plenty of love, support and understanding from this >group. > >Peg, wife of Phil (56), UC 30 yrs, Dx PSC 12/98, working toward listing, >Santa Clarita, CA > >dscala1193@... wrote: > > > Hello - > > > > I am a new member to this group and would like to give you some info > > about myself. > > > > I am 29 yrs old and live in NYC. I was diagnosed with PSC almost a > > year ago, shortly after the birth of my 1st child. I really didn't > > take this too seriously until recently when I started doing research on > > the disease. I think the doc who diagnosed me " softened " the blow a > > little too much when he told me about it. > > > > I also have ulcerative colitis (for about 10 yrs). I am taking Asacol > > for the UC and Actigall for the PSC. I get my liver function (blood > > test) every three months, and so far they have been normal. > > > > I joined this group to get more information about the disease and > > treatments. I would like to know what are the symptoms others are > > experiencing and what treatments you are using. Also, I would like to > > know if anyone knows of specialists in my area (I currently am seeing > > just my gastroenterologist). > > > > I also joined for the support. It is hard to talk about this disease > > with my family because they don't understand what I am going through. > > Also, I think my husband downplays the disease becasue he doesn't want > > to deal with it. > > > > Thanks for listening and I appreciate any info you can give me. > > Dawn. > > > > > > ------------------------------------------------------------------------ > > > > eGroups.com home: /group/ > > - Simplifying group communications > > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > ______________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Hi Dawn, You have come to the right place. I just joined this group a few weeks ago and they have been wonderful. I am 34, was diagnosed with PSC in 1997. I will be starting the workup to be placed on the tx list. I get alot of nausea, upper right quadrant pain, fatigue and back pain usually near my shoulder blades. My liver at this time is working well but my biliary ducts are a real mess. I also take Actigall. My doctor(a liver specialist) told me 2 years ago that this disease could take years to progress. My disease has moved rather quickly though. It is an unpredictable disease. The best thing for you to do is to be educated and to know what to look for so you are starting out on the right foot. Good Luck. PSC97 > >Reply-To: egroups >To: egroups >Subject: Re: New Member >Date: Sun, 03 Oct 1999 20:21:25 -0700 > >Hi Dawn, >Welcome to the group. Right now you seem to be taking the appropriate >medications. At first your GI doctor will work with your internist in >treating this but eventually they will probably send you to a liver >specialist. My husband Phil has had UC for 30 years and was diagnosed with >PSC 12/98. He had 4 consecutive bouts with cholangitis where he ran a >fever >(over 101) and turned jandiced. (The best place to check for Jaundice is in >the whites of the eyes). He can or cannot have some pain associated with >it. Most of his pain came from a gallbladder full of stones. (That was >removed) but he did have one more attack since. > >He now gets on and off pain between his shoulder blades that moves up his >neck to his head. More people complain of URQ(upper right quadrant) pain >though. Usually the day before the attach of cholangitis (infection of the >bile duct) he just feels real UCKY as he would say and I can tell by the >expression on his face. These reoccuring infections can be very serious >and >sometimes deadly so that is why he was referred to the liver specialist and >has gone through the testing in order to be put on a TX (transplant list). >You have to be on the list for quite some time before receiving a >transplant. > >Right now the worst thing for him is that he gets fatigued very easily. He >has a hard time getting up in the morning and has to rest by afternoon. He >started out on State disability which has gone into Social Security >Disability (If he had a job that he had been on for a number of years they >would probably work around him but he lost his job a month before he was >DX(diagnosed) so finding a job at 56, when you can't work a full day and >never know when you're going to be tired or at the doctors or even in the >hospital has made it impossible to look for work. He is trying to start a >home-based business that he can work at when he feels like it. Others in >the group have been able to maintain their jobs even while being very sick. > >When he gets a cholangitis attack we have found that the best thing to do >is >get to ER and have the GI contacted. They admit him and give he about 3 >days of IV antibiotics and that seems to do the trick. He has been >infection free since March 23rd. Also the doctors feel that he has had >this >disease for at least 10 years by the fact that he bile ducts are so >constricted. His liver seems to be okay so far. > >Sorry to be so lengthy. Hope this helps. I find that Phil seems to have >more of your husbands attitude. Like if you don't think about it, it will >go away. You'll get plenty of love, support and understanding from this >group. > >Peg, wife of Phil (56), UC 30 yrs, Dx PSC 12/98, working toward listing, >Santa Clarita, CA > >dscala1193@... wrote: > > > Hello - > > > > I am a new member to this group and would like to give you some info > > about myself. > > > > I am 29 yrs old and live in NYC. I was diagnosed with PSC almost a > > year ago, shortly after the birth of my 1st child. I really didn't > > take this too seriously until recently when I started doing research on > > the disease. I think the doc who diagnosed me " softened " the blow a > > little too much when he told me about it. > > > > I also have ulcerative colitis (for about 10 yrs). I am taking Asacol > > for the UC and Actigall for the PSC. I get my liver function (blood > > test) every three months, and so far they have been normal. > > > > I joined this group to get more information about the disease and > > treatments. I would like to know what are the symptoms others are > > experiencing and what treatments you are using. Also, I would like to > > know if anyone knows of specialists in my area (I currently am seeing > > just my gastroenterologist). > > > > I also joined for the support. It is hard to talk about this disease > > with my family because they don't understand what I am going through. > > Also, I think my husband downplays the disease becasue he doesn't want > > to deal with it. > > > > Thanks for listening and I appreciate any info you can give me. > > Dawn. > > > > > > ------------------------------------------------------------------------ > > > > eGroups.com home: /group/ > > - Simplifying group communications > > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > ______________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Hi Dawn, You have come to the right place. I just joined this group a few weeks ago and they have been wonderful. I am 34, was diagnosed with PSC in 1997. I will be starting the workup to be placed on the tx list. I get alot of nausea, upper right quadrant pain, fatigue and back pain usually near my shoulder blades. My liver at this time is working well but my biliary ducts are a real mess. I also take Actigall. My doctor(a liver specialist) told me 2 years ago that this disease could take years to progress. My disease has moved rather quickly though. It is an unpredictable disease. The best thing for you to do is to be educated and to know what to look for so you are starting out on the right foot. Good Luck. PSC97 > >Reply-To: egroups >To: egroups >Subject: Re: New Member >Date: Sun, 03 Oct 1999 20:21:25 -0700 > >Hi Dawn, >Welcome to the group. Right now you seem to be taking the appropriate >medications. At first your GI doctor will work with your internist in >treating this but eventually they will probably send you to a liver >specialist. My husband Phil has had UC for 30 years and was diagnosed with >PSC 12/98. He had 4 consecutive bouts with cholangitis where he ran a >fever >(over 101) and turned jandiced. (The best place to check for Jaundice is in >the whites of the eyes). He can or cannot have some pain associated with >it. Most of his pain came from a gallbladder full of stones. (That was >removed) but he did have one more attack since. > >He now gets on and off pain between his shoulder blades that moves up his >neck to his head. More people complain of URQ(upper right quadrant) pain >though. Usually the day before the attach of cholangitis (infection of the >bile duct) he just feels real UCKY as he would say and I can tell by the >expression on his face. These reoccuring infections can be very serious >and >sometimes deadly so that is why he was referred to the liver specialist and >has gone through the testing in order to be put on a TX (transplant list). >You have to be on the list for quite some time before receiving a >transplant. > >Right now the worst thing for him is that he gets fatigued very easily. He >has a hard time getting up in the morning and has to rest by afternoon. He >started out on State disability which has gone into Social Security >Disability (If he had a job that he had been on for a number of years they >would probably work around him but he lost his job a month before he was >DX(diagnosed) so finding a job at 56, when you can't work a full day and >never know when you're going to be tired or at the doctors or even in the >hospital has made it impossible to look for work. He is trying to start a >home-based business that he can work at when he feels like it. Others in >the group have been able to maintain their jobs even while being very sick. > >When he gets a cholangitis attack we have found that the best thing to do >is >get to ER and have the GI contacted. They admit him and give he about 3 >days of IV antibiotics and that seems to do the trick. He has been >infection free since March 23rd. Also the doctors feel that he has had >this >disease for at least 10 years by the fact that he bile ducts are so >constricted. His liver seems to be okay so far. > >Sorry to be so lengthy. Hope this helps. I find that Phil seems to have >more of your husbands attitude. Like if you don't think about it, it will >go away. You'll get plenty of love, support and understanding from this >group. > >Peg, wife of Phil (56), UC 30 yrs, Dx PSC 12/98, working toward listing, >Santa Clarita, CA > >dscala1193@... wrote: > > > Hello - > > > > I am a new member to this group and would like to give you some info > > about myself. > > > > I am 29 yrs old and live in NYC. I was diagnosed with PSC almost a > > year ago, shortly after the birth of my 1st child. I really didn't > > take this too seriously until recently when I started doing research on > > the disease. I think the doc who diagnosed me " softened " the blow a > > little too much when he told me about it. > > > > I also have ulcerative colitis (for about 10 yrs). I am taking Asacol > > for the UC and Actigall for the PSC. I get my liver function (blood > > test) every three months, and so far they have been normal. > > > > I joined this group to get more information about the disease and > > treatments. I would like to know what are the symptoms others are > > experiencing and what treatments you are using. Also, I would like to > > know if anyone knows of specialists in my area (I currently am seeing > > just my gastroenterologist). > > > > I also joined for the support. It is hard to talk about this disease > > with my family because they don't understand what I am going through. > > Also, I think my husband downplays the disease becasue he doesn't want > > to deal with it. > > > > Thanks for listening and I appreciate any info you can give me. > > Dawn. > > > > > > ------------------------------------------------------------------------ > > > > eGroups.com home: /group/ > > - Simplifying group communications > > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > ______________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Hi Dawn, I'm sure you'll find this group informative and supporting. I'm a 52 year old who had a liver transplant 18 months ago today. The first signs of my PSC appeared when I was 33, but dx wasn't done for another 9 years. (PSC wasn't widely recognized back then). Diagnosis of PSC is getting better, so you probably have no overt symptoms and may not have any for years (a justification used for " softening the blow " ). No studies have yet demonstrated a treatment which will slow or reverse PSC, Actigall/Ursol definitely helps keep LFT low, Milk thistle and SAMe have testimonial support for relieving symptoms of fatigue. When strictures in ducts become a problem ERCPs can be done to force open the narrowings, allowing bile to flow. Your Actigall treatment will probably prevent formation of stones which can lodge in the biliary tree and cause acute infections (cholangitis) or pancreatitis. Late in the course of PSC fatigue and jauntice seem to overtake everyone. Constant pain and/or itching are sometimes encountered and frequently hard to relieve. As Peg mentioned, cholangitis is one condition for which you should seek treatment. Indications are flu like symptoms with fever and chills which last briefly (12 to 36 hours) and recur regularly. Treatment varies from IV antibiotics to constant oral antibiotics to antibiotics when you have symptoms. I think you will have many years to enjoy with your family before PSC becomes an overt presence in your life. I hope that your husband can provide the support needed in the trials that you both will face if no progress is made in stopping PSC. Tim ltx 4/4/98 --- dscala1193@... wrote: > I joined this group to get more information about the disease > and treatments. I would like to know what are the symptoms > others are experiencing and what treatments you are using. > > I also joined for the support. It is hard to talk about this > disease with my family because they don't understand what I am > going through. Also, I think my husband downplays the disease > becasue he doesn't want to deal with it. > > Thanks for listening and I appreciate any info you can give > me. > Dawn. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Hi Dawn, I'm sure you'll find this group informative and supporting. I'm a 52 year old who had a liver transplant 18 months ago today. The first signs of my PSC appeared when I was 33, but dx wasn't done for another 9 years. (PSC wasn't widely recognized back then). Diagnosis of PSC is getting better, so you probably have no overt symptoms and may not have any for years (a justification used for " softening the blow " ). No studies have yet demonstrated a treatment which will slow or reverse PSC, Actigall/Ursol definitely helps keep LFT low, Milk thistle and SAMe have testimonial support for relieving symptoms of fatigue. When strictures in ducts become a problem ERCPs can be done to force open the narrowings, allowing bile to flow. Your Actigall treatment will probably prevent formation of stones which can lodge in the biliary tree and cause acute infections (cholangitis) or pancreatitis. Late in the course of PSC fatigue and jauntice seem to overtake everyone. Constant pain and/or itching are sometimes encountered and frequently hard to relieve. As Peg mentioned, cholangitis is one condition for which you should seek treatment. Indications are flu like symptoms with fever and chills which last briefly (12 to 36 hours) and recur regularly. Treatment varies from IV antibiotics to constant oral antibiotics to antibiotics when you have symptoms. I think you will have many years to enjoy with your family before PSC becomes an overt presence in your life. I hope that your husband can provide the support needed in the trials that you both will face if no progress is made in stopping PSC. Tim ltx 4/4/98 --- dscala1193@... wrote: > I joined this group to get more information about the disease > and treatments. I would like to know what are the symptoms > others are experiencing and what treatments you are using. > > I also joined for the support. It is hard to talk about this > disease with my family because they don't understand what I am > going through. Also, I think my husband downplays the disease > becasue he doesn't want to deal with it. > > Thanks for listening and I appreciate any info you can give > me. > Dawn. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Hi Dawn, I'm sure you'll find this group informative and supporting. I'm a 52 year old who had a liver transplant 18 months ago today. The first signs of my PSC appeared when I was 33, but dx wasn't done for another 9 years. (PSC wasn't widely recognized back then). Diagnosis of PSC is getting better, so you probably have no overt symptoms and may not have any for years (a justification used for " softening the blow " ). No studies have yet demonstrated a treatment which will slow or reverse PSC, Actigall/Ursol definitely helps keep LFT low, Milk thistle and SAMe have testimonial support for relieving symptoms of fatigue. When strictures in ducts become a problem ERCPs can be done to force open the narrowings, allowing bile to flow. Your Actigall treatment will probably prevent formation of stones which can lodge in the biliary tree and cause acute infections (cholangitis) or pancreatitis. Late in the course of PSC fatigue and jauntice seem to overtake everyone. Constant pain and/or itching are sometimes encountered and frequently hard to relieve. As Peg mentioned, cholangitis is one condition for which you should seek treatment. Indications are flu like symptoms with fever and chills which last briefly (12 to 36 hours) and recur regularly. Treatment varies from IV antibiotics to constant oral antibiotics to antibiotics when you have symptoms. I think you will have many years to enjoy with your family before PSC becomes an overt presence in your life. I hope that your husband can provide the support needed in the trials that you both will face if no progress is made in stopping PSC. Tim ltx 4/4/98 --- dscala1193@... wrote: > I joined this group to get more information about the disease > and treatments. I would like to know what are the symptoms > others are experiencing and what treatments you are using. > > I also joined for the support. It is hard to talk about this > disease with my family because they don't understand what I am > going through. Also, I think my husband downplays the disease > becasue he doesn't want to deal with it. > > Thanks for listening and I appreciate any info you can give > me. > Dawn. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Dawn, I am rescently diagnosed 6/99. I would love to talk with you. I also have had normal blood levels since the ERCP to clip my bile duct and release " a ton " of bile. What symptoms do you have, if any, I have Upper Right Quadrant pain and nausea, also back pain in the liver area at times. I get really tired and have bouts of diarrhea. This group will be of great help to you. There are a lot of people that know technical stuff and you will get a lot of support no matter what you are going through. I am so glad that God led me to this site, it is really hard going through this with out any one you " know " to talk with that has it, I don't know how you have done that for a year. Talk with you soon Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Dawn, I am rescently diagnosed 6/99. I would love to talk with you. I also have had normal blood levels since the ERCP to clip my bile duct and release " a ton " of bile. What symptoms do you have, if any, I have Upper Right Quadrant pain and nausea, also back pain in the liver area at times. I get really tired and have bouts of diarrhea. This group will be of great help to you. There are a lot of people that know technical stuff and you will get a lot of support no matter what you are going through. I am so glad that God led me to this site, it is really hard going through this with out any one you " know " to talk with that has it, I don't know how you have done that for a year. Talk with you soon Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Dawn, I am rescently diagnosed 6/99. I would love to talk with you. I also have had normal blood levels since the ERCP to clip my bile duct and release " a ton " of bile. What symptoms do you have, if any, I have Upper Right Quadrant pain and nausea, also back pain in the liver area at times. I get really tired and have bouts of diarrhea. This group will be of great help to you. There are a lot of people that know technical stuff and you will get a lot of support no matter what you are going through. I am so glad that God led me to this site, it is really hard going through this with out any one you " know " to talk with that has it, I don't know how you have done that for a year. Talk with you soon Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Hi Dawn! Welcome, welcome, welcome to the best PSC website on the internet -- and I really mean this. Everyone here is so concerned about one another and will post what is happening with them and what their status is. I joined I guess about a year ago and I have learned more than I ever thought I would!!! I am still learning!!! These guys are great so do not hold back anything you want to ask about -- whether you think it is insignificant or not. You will not regret this! Again welcome to our wonderful website!!! Hugs, Biddy dx 1996 New Member >Hello - > >I am a new member to this group and would like to give you some info >about myself. > >I am 29 yrs old and live in NYC. I was diagnosed with PSC almost a >year ago, shortly after the birth of my 1st child. I really didn't >take this too seriously until recently when I started doing research on >the disease. I think the doc who diagnosed me " softened " the blow a >little too much when he told me about it. > >I also have ulcerative colitis (for about 10 yrs). I am taking Asacol >for the UC and Actigall for the PSC. I get my liver function (blood >test) every three months, and so far they have been normal. > >I joined this group to get more information about the disease and >treatments. I would like to know what are the symptoms others are >experiencing and what treatments you are using. Also, I would like to >know if anyone knows of specialists in my area (I currently am seeing >just my gastroenterologist). > >I also joined for the support. It is hard to talk about this disease >with my family because they don't understand what I am going through. >Also, I think my husband downplays the disease becasue he doesn't want >to deal with it. > >Thanks for listening and I appreciate any info you can give me. >Dawn. > > > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Hi Dawn! Welcome, welcome, welcome to the best PSC website on the internet -- and I really mean this. Everyone here is so concerned about one another and will post what is happening with them and what their status is. I joined I guess about a year ago and I have learned more than I ever thought I would!!! I am still learning!!! These guys are great so do not hold back anything you want to ask about -- whether you think it is insignificant or not. You will not regret this! Again welcome to our wonderful website!!! Hugs, Biddy dx 1996 New Member >Hello - > >I am a new member to this group and would like to give you some info >about myself. > >I am 29 yrs old and live in NYC. I was diagnosed with PSC almost a >year ago, shortly after the birth of my 1st child. I really didn't >take this too seriously until recently when I started doing research on >the disease. I think the doc who diagnosed me " softened " the blow a >little too much when he told me about it. > >I also have ulcerative colitis (for about 10 yrs). I am taking Asacol >for the UC and Actigall for the PSC. I get my liver function (blood >test) every three months, and so far they have been normal. > >I joined this group to get more information about the disease and >treatments. I would like to know what are the symptoms others are >experiencing and what treatments you are using. Also, I would like to >know if anyone knows of specialists in my area (I currently am seeing >just my gastroenterologist). > >I also joined for the support. It is hard to talk about this disease >with my family because they don't understand what I am going through. >Also, I think my husband downplays the disease becasue he doesn't want >to deal with it. > >Thanks for listening and I appreciate any info you can give me. >Dawn. > > > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 1999 Report Share Posted December 31, 1999 Welcome Spring. We'll be talking later. Glad to have you in the group. Peg - wife of Phil dx PSC 12/98 appt with UCLA tx team Jan 10th. SPRINGREED@... wrote: > Hi! My name is Spring and my husband has PSC. I am 29 and we have 2 > children, he is 36. My husband was tenatively diagnosed in early 1997 then > after 2 years of B.S. and some other medical problems, the diagnoses was > confirmed with a second ERCP. They first noticed a rise in his liver enzymes > in 1992 but was never figured out until we moved to Oklahoma. A liver biopsy > said it was some kind of poisoning, they suggested anabolic steroids, which > he has never used, so we didn't take that very seriously. Well anyway to > make a long story short, just before Christmas the transplant center here > informed us that we had to come up with $130,000 to get the process going. > Thank goodness I have some insurance through my employer that I can add him > on to, I hope. Anyway we had just started going to Baptist, where the center > is, when after 2 visits our doctor decided to leave and go to Pheonix. We > were " assigned " to one of his associates but we have not seen him yet. I > have been reading some of the messages and can relate to the doctor thing, > our doctors have not even called us to let us know how much change there has > been in the 2 1/2 years since the first ERCP and the second one. Also, the > report, which I managed to get the nurse to fax me states there is evidence > of bleeding in the bile ducts, the first one didn' t show this. I am quite > curious as to what causes this and what it means. Do any of you know? Also, > have any of you experienced problems with your eyes such as blurred vision or > being unsteady and dizzy when you get up to walk? Recently my husband has > been having this problem. > > Well I just wanted to write real quick to introduce myself, I am new to the > computer/e-mail thing, my inlaws sent us this computer for the kids. So, if > I screw up sorry, I am just glad I have other people to talk to about all of > this, maybe I will be able to understand more of what my husband feel like > and such by talking to y'all. I work in a doctor's office and am relativly > new to that, but it seems y'all know so much more about all of this. Hope > y'all will be able to help with some of the questions I may have. Well > that's all for now. Thanks! > Spring > P.S. I'm glad you made it home , sounds like maybe things will be okay > for a little while. Take Care!!! HAPPY NEW YEAR > !!!!!!!!!!!!!!!!!!!!!!!! > > ------------------------------------------------------------------------ > Sneezing, wheezing, trouble breathing? If you have allergies or asthma, or > > want to breathe happier and healthier, we can help. Visit gazoontite.com > > for the products, information and services you need to breathe easier. > http://click./1/396/4/_/24674/_/946698648 > > eGroups.com Home: /group// > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 1999 Report Share Posted December 31, 1999 Spring, Welcome to the group. I'm sorry to hear that your husband is so far along that he is being recommended for transplant. I would recommend reading the transplant group also (available online at http://x21.deja.com/[sT_rn=if]/topics_if.xp?search=topic & group=bit.listserv.tran\ splant). Although it covers all transplant topics, it is very helpful for anyone preparing for a transplant because becoming familiar with what can be expected will make the actual transplant experience less scary and give you the confidence to demand further medical intervention when it is needed and not immediately forthcoming. In the near term your husband needs to keep as healthy and as physically fit as possible. Major surgery succeeds best on healthy people. If your husband LFT's were first observed to be elevated 8 years ago, it would seem he has had a rapid progression of PSC. But everyone is different. Has he had any major incidents that caused your doctors to recommend listing for a transplant? Wishing you both a health filled new year, Tim - liver transplant 4/4/98 __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2000 Report Share Posted January 1, 2000 Spring, Welcome to the group. I hope you can get some answers to your very important questions concerning your husband. By the way what is his name? We have a lot of information to share about our trials what we've gone thru. Hopefully we can help you and your husband with some of the questions that you have. Happy New Year, Larry UC-95 PSC-96 - Baltimore Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2000 Report Share Posted January 1, 2000 Spring, Good to hear from you. I think we have at least one patient here from OK. Some of the symptoms you mention don't sound very familiar to me (mostly just from hearing from other patients). For example the bleeding of the bile ducts sounds unusual. A lot of liver patients have bleeding of the veins around the stomach, maybe that's what they said? A lot of times they can see these veins and/or the bleeding when they use the scope for the ERCP. Regarding the dizziness and blurred vision, that also sounds unusual. I would definitely discuss this with your doctor(s). What some liver patients get is a condition called encephalopathy which may be due to a build up of ammonia or other substances in the blood due to poor liver function. This can lead to poor mental function and confusion (brain fog). It is sometimes treatable. Good luck Roy T. new member > Also, the > report, which I managed to get the nurse to fax me states there is evidence > of bleeding in the bile ducts, the first one didn' t show this. I am quite > curious as to what causes this and what it means. Do any of you know? Also, > have any of you experienced problems with your eyes such as blurred vision or > being unsteady and dizzy when you get up to walk? Recently my husband has > been having this problem. > > Spring > P.S. I'm glad you made it home , sounds like maybe things will be okay > for a little while. Take Care!!! HAPPY NEW YEAR > !!!!!!!!!!!!!!!!!!!!!!!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2000 Report Share Posted January 1, 2000 Spring, Good to hear from you. I think we have at least one patient here from OK. Some of the symptoms you mention don't sound very familiar to me (mostly just from hearing from other patients). For example the bleeding of the bile ducts sounds unusual. A lot of liver patients have bleeding of the veins around the stomach, maybe that's what they said? A lot of times they can see these veins and/or the bleeding when they use the scope for the ERCP. Regarding the dizziness and blurred vision, that also sounds unusual. I would definitely discuss this with your doctor(s). What some liver patients get is a condition called encephalopathy which may be due to a build up of ammonia or other substances in the blood due to poor liver function. This can lead to poor mental function and confusion (brain fog). It is sometimes treatable. Good luck Roy T. new member > Also, the > report, which I managed to get the nurse to fax me states there is evidence > of bleeding in the bile ducts, the first one didn' t show this. I am quite > curious as to what causes this and what it means. Do any of you know? Also, > have any of you experienced problems with your eyes such as blurred vision or > being unsteady and dizzy when you get up to walk? Recently my husband has > been having this problem. > > Spring > P.S. I'm glad you made it home , sounds like maybe things will be okay > for a little while. Take Care!!! HAPPY NEW YEAR > !!!!!!!!!!!!!!!!!!!!!!!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2000 Report Share Posted January 1, 2000 Spring, Good to hear from you. I think we have at least one patient here from OK. Some of the symptoms you mention don't sound very familiar to me (mostly just from hearing from other patients). For example the bleeding of the bile ducts sounds unusual. A lot of liver patients have bleeding of the veins around the stomach, maybe that's what they said? A lot of times they can see these veins and/or the bleeding when they use the scope for the ERCP. Regarding the dizziness and blurred vision, that also sounds unusual. I would definitely discuss this with your doctor(s). What some liver patients get is a condition called encephalopathy which may be due to a build up of ammonia or other substances in the blood due to poor liver function. This can lead to poor mental function and confusion (brain fog). It is sometimes treatable. Good luck Roy T. new member > Also, the > report, which I managed to get the nurse to fax me states there is evidence > of bleeding in the bile ducts, the first one didn' t show this. I am quite > curious as to what causes this and what it means. Do any of you know? Also, > have any of you experienced problems with your eyes such as blurred vision or > being unsteady and dizzy when you get up to walk? Recently my husband has > been having this problem. > > Spring > P.S. I'm glad you made it home , sounds like maybe things will be okay > for a little while. Take Care!!! HAPPY NEW YEAR > !!!!!!!!!!!!!!!!!!!!!!!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2000 Report Share Posted January 1, 2000 Hello Spring!!! My name is Dawn and I have PSC and UC. I am 29 yrs old (married and one child). This is a great group for getting answers to your questions...even if someone doesn't know offhand, someone sometimes does research and gets back to you. I've also found it to be a great source of comfort and support. It helps to know I am not alone and that others do understand what it feels like. There are other spouses of PSCers on this group that canhelp you deal with what you are going through. My question after reading your e-mail is why do you have to have $130,000 to get the ball rolling...is this normal? (maybe someone else in the group can answer this, if not done so already...I still have 41 more e-mails to read so I may be asking prematurely). Welcome to the group!!!! Love, Dawn Quote Link to comment Share on other sites More sharing options...
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