Guest guest Posted March 11, 2009 Report Share Posted March 11, 2009 CHERYL, I'm not sure this is what you wanted. Stages of PSCStage 1 — Fibrosis or scar tissue limited to a few spots calledportal areas, little areas of " plumbing " or ductwork in the liver tissueStage 2 — Fibrosis begins to appear outside the portal areas. Thestrands of fibrosis are not yet connected to each other.Stage 3 — Areas of fibrosis connecting to each otherStage 4 — Widespread, honeycomblike scarring known as cirrhosis Arne, or anyone who can access this,I am sorry I am having trouble sending new e-mails so I have to reply. My question: can you post the four stages of liver disease and four stages of cirrhosis? There was a really good description posted before. I searched the archives and Internet and couldn't find one as good as the one posted that I remember. I told Barbara ('s wife from SLC) I would find it and post it. I don't want to disappoint her because of my poor search skills. Thanks anyone who can access this, Cheryl ID PS Cindy get your blood checked. That sounds like insane bleeding! Re:Update on Hillybilly Bob > > > > > > > Just a note to update everyone on the status of Bob.> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Thanks.> > > > > > > > > > Tarheel Tim> > > > > > > > > > > > > > -- Ian Cribb P.Eng. (6... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2009 Report Share Posted March 11, 2009 Ian, Thank you for posting this. This is part of what I meant. I was thinking there was another four stages of cirrhosis once a person had reached end-stage. I'll keep looking for that as well. You are really good at this. thank you for your contributions. Where did you find this? I had these lists in my folder and it got emptied when someone was cleaning up the extra files. Heck, it might have been me. Or maybe it was on my old computer. BTW, I had an awful, awful time itching last night. But, I am trying to find the good side to every bad thing that happens. This is a hard one but here it is :perk of being up all night itching with headache: I had total privacy in the bathroom. That is the best I can come up with. Take care, Cheryl ID > CHERYL, > > I'm not sure this is what you wanted. > > Stages of PSC > Stage 1 — Fibrosis or scar tissue limited to a few spots called > portal areas, little areas of " plumbing " or ductwork in the liver > tissue > Stage 2 — Fibrosis begins to appear outside the portal areas. The > strands of fibrosis are not yet connected to each other. > Stage 3 — Areas of fibrosis connecting to each other > Stage 4 — Widespread, honeycomblike scarring known as cirrhosis > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Thanks. > > > > > > > > > > > > > > > > > > > > Tarheel Tim > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -- > Ian Cribb P.Eng. > (6... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2009 Report Share Posted March 11, 2009 Ian, Thank you for posting this. This is part of what I meant. I was thinking there was another four stages of cirrhosis once a person had reached end-stage. I'll keep looking for that as well. You are really good at this. thank you for your contributions. Where did you find this? I had these lists in my folder and it got emptied when someone was cleaning up the extra files. Heck, it might have been me. Or maybe it was on my old computer. BTW, I had an awful, awful time itching last night. But, I am trying to find the good side to every bad thing that happens. This is a hard one but here it is :perk of being up all night itching with headache: I had total privacy in the bathroom. That is the best I can come up with. Take care, Cheryl ID > CHERYL, > > I'm not sure this is what you wanted. > > Stages of PSC > Stage 1 — Fibrosis or scar tissue limited to a few spots called > portal areas, little areas of " plumbing " or ductwork in the liver > tissue > Stage 2 — Fibrosis begins to appear outside the portal areas. The > strands of fibrosis are not yet connected to each other. > Stage 3 — Areas of fibrosis connecting to each other > Stage 4 — Widespread, honeycomblike scarring known as cirrhosis > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Thanks. > > > > > > > > > > > > > > > > > > > > Tarheel Tim > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -- > Ian Cribb P.Eng. > (6... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2009 Report Share Posted March 11, 2009 IanWhat happens at stage 4 cirrhosis? In most of my reports from my PCP it says near end stage cirrhosis and I'm curious because my MELD score does not reflect me getting a transplant soon even though I'm feeling horrible. ThanksSerbrinaSent via BlackBerry by AT&TFrom: "Logan Berg" Date: Wed, 11 Mar 2009 11:28:32 -0600To: < >Subject: Re: liver disease staging Ian, Thank you for posting this. This is part of what I meant. I was thinking there was another four stages of cirrhosis once a person had reached end-stage. I'll keep looking for that as well. You are really good at this. thank you for your contributions. Where did you find this? I had these lists in my folder and it got emptied when someone was cleaning up the extra files. Heck, it might have been me. Or maybe it was on my old computer. BTW, I had an awful, awful time itching last night. But, I am trying to find the good side to every bad thing that happens. This is a hard one but here it is :perk of being up all night itching with headache: I had total privacy in the bathroom. That is the best I can come up with. Take care, Cheryl ID > CHERYL, > > I'm not sure this is what you wanted. > > Stages of PSC > Stage 1 — Fibrosis or scar tissue limited to a few spots called > portal areas, little areas of " plumbing " or ductwork in the liver > tissue > Stage 2 — Fibrosis begins to appear outside the portal areas. The > strands of fibrosis are not yet connected to each other. > Stage 3 — Areas of fibrosis connecting to each other > Stage 4 — Widespread, honeycomblike scarring known as cirrhosis > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Thanks. > > > > > > > > > > > > > > > > > > > > Tarheel Tim > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -- > Ian Cribb P.Eng. > (6... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2009 Report Share Posted March 11, 2009 Cheryl, I copied it from a post from Dawn from Nov 20, 2008. I find it much faster to search posts I have received with Gmail (perhaps because it only covers posts for last year and a half, since I been a member). I entered " stages " and in seconds it had a list of 88 threads (with all the Headers) that have the word in it. Is maybe the further info you want maybe available at PSC Literature, or PSC Partners? Serbrina, I'm not sure what happens in stage 4. I have know idea at what stage I'm at and from what I read here the symptoms people get vary a lot independent of Stage. Ian (52) PSC 89 IanWhat happens at stage 4 cirrhosis? In most of my reports from my PCP it says near end stage cirrhosis and I'm curious because my MELD score does not reflect me getting a transplant soon even though I'm feeling horrible. Thanks Serbrina Sent via BlackBerry by AT & T From: " Logan Berg " Date: Wed, 11 Mar 2009 11:28:32 -0600To: < > Subject: Re: liver disease staging Ian,Thank you for posting this. This is part of what I meant. I was thinking there was another four stages of cirrhosis once a person had reached end-stage. I'll keep looking for that as well. You are really good at this. thank you for your contributions. Where did you find this? I had these lists in my folder and it got emptied when someone was cleaning up the extra files. Heck, it might have been me. Or maybe it was on my old computer. BTW, I had an awful, awful time itching last night. But, I am trying to find the good side to every bad thing that happens. This is a hard one but here it is :perk of being up all night itching with headache: I had total privacy in the bathroom. That is the best I can come up with. Take care, Cheryl ID > CHERYL,> > I'm not sure this is what you wanted.> > Stages of PSC> Stage 1 — Fibrosis or scar tissue limited to a few spots called > portal areas, little areas of " plumbing " or ductwork in the liver> tissue> Stage 2 — Fibrosis begins to appear outside the portal areas. The> strands of fibrosis are not yet connected to each other. > Stage 3 — Areas of fibrosis connecting to each other> Stage 4 — Widespread, honeycomblike scarring known as cirrhosis> > > > > > > >> > > >> > > > > > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > > > > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > > Thanks.> > > > > > > >> > > >> > > >> > > > Tarheel Tim> > > >> > > >> > > >> > > >> > > >> > > > > > >> > >> > > >> > > > -- > Ian Cribb P.Eng.> (6...> > -- Ian Cribb P.Eng. (6... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2009 Report Share Posted March 11, 2009 Cheryl, I copied it from a post from Dawn from Nov 20, 2008. I find it much faster to search posts I have received with Gmail (perhaps because it only covers posts for last year and a half, since I been a member). I entered " stages " and in seconds it had a list of 88 threads (with all the Headers) that have the word in it. Is maybe the further info you want maybe available at PSC Literature, or PSC Partners? Serbrina, I'm not sure what happens in stage 4. I have know idea at what stage I'm at and from what I read here the symptoms people get vary a lot independent of Stage. Ian (52) PSC 89 IanWhat happens at stage 4 cirrhosis? In most of my reports from my PCP it says near end stage cirrhosis and I'm curious because my MELD score does not reflect me getting a transplant soon even though I'm feeling horrible. Thanks Serbrina Sent via BlackBerry by AT & T From: " Logan Berg " Date: Wed, 11 Mar 2009 11:28:32 -0600To: < > Subject: Re: liver disease staging Ian,Thank you for posting this. This is part of what I meant. I was thinking there was another four stages of cirrhosis once a person had reached end-stage. I'll keep looking for that as well. You are really good at this. thank you for your contributions. Where did you find this? I had these lists in my folder and it got emptied when someone was cleaning up the extra files. Heck, it might have been me. Or maybe it was on my old computer. BTW, I had an awful, awful time itching last night. But, I am trying to find the good side to every bad thing that happens. This is a hard one but here it is :perk of being up all night itching with headache: I had total privacy in the bathroom. That is the best I can come up with. Take care, Cheryl ID > CHERYL,> > I'm not sure this is what you wanted.> > Stages of PSC> Stage 1 — Fibrosis or scar tissue limited to a few spots called > portal areas, little areas of " plumbing " or ductwork in the liver> tissue> Stage 2 — Fibrosis begins to appear outside the portal areas. The> strands of fibrosis are not yet connected to each other. > Stage 3 — Areas of fibrosis connecting to each other> Stage 4 — Widespread, honeycomblike scarring known as cirrhosis> > > > > > > >> > > >> > > > > > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > > > > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > > Thanks.> > > > > > > >> > > >> > > >> > > > Tarheel Tim> > > >> > > >> > > >> > > >> > > >> > > > > > >> > >> > > >> > > > -- > Ian Cribb P.Eng.> (6...> > -- Ian Cribb P.Eng. (6... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2009 Report Share Posted March 11, 2009 Cheryl, I copied it from a post from Dawn from Nov 20, 2008. I find it much faster to search posts I have received with Gmail (perhaps because it only covers posts for last year and a half, since I been a member). I entered " stages " and in seconds it had a list of 88 threads (with all the Headers) that have the word in it. Is maybe the further info you want maybe available at PSC Literature, or PSC Partners? Serbrina, I'm not sure what happens in stage 4. I have know idea at what stage I'm at and from what I read here the symptoms people get vary a lot independent of Stage. Ian (52) PSC 89 IanWhat happens at stage 4 cirrhosis? In most of my reports from my PCP it says near end stage cirrhosis and I'm curious because my MELD score does not reflect me getting a transplant soon even though I'm feeling horrible. Thanks Serbrina Sent via BlackBerry by AT & T From: " Logan Berg " Date: Wed, 11 Mar 2009 11:28:32 -0600To: < > Subject: Re: liver disease staging Ian,Thank you for posting this. This is part of what I meant. I was thinking there was another four stages of cirrhosis once a person had reached end-stage. I'll keep looking for that as well. You are really good at this. thank you for your contributions. Where did you find this? I had these lists in my folder and it got emptied when someone was cleaning up the extra files. Heck, it might have been me. Or maybe it was on my old computer. BTW, I had an awful, awful time itching last night. But, I am trying to find the good side to every bad thing that happens. This is a hard one but here it is :perk of being up all night itching with headache: I had total privacy in the bathroom. That is the best I can come up with. Take care, Cheryl ID > CHERYL,> > I'm not sure this is what you wanted.> > Stages of PSC> Stage 1 — Fibrosis or scar tissue limited to a few spots called > portal areas, little areas of " plumbing " or ductwork in the liver> tissue> Stage 2 — Fibrosis begins to appear outside the portal areas. The> strands of fibrosis are not yet connected to each other. > Stage 3 — Areas of fibrosis connecting to each other> Stage 4 — Widespread, honeycomblike scarring known as cirrhosis> > > > > > > >> > > >> > > > > > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > > > > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > > Thanks.> > > > > > > >> > > >> > > >> > > > Tarheel Tim> > > >> > > >> > > >> > > >> > > >> > > > > > >> > >> > > >> > > > -- > Ian Cribb P.Eng.> (6...> > -- Ian Cribb P.Eng. (6... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Cheryl, I don't know that there is really " stages " of cirrhosis. You either have cirrhosis or you don't. The liver is either still working well and compensating for the cirrhosis, or the liver is non compensating. When the liver is not compensating that is when the person gets liver failure symptoms like: Portal hypertension, ascites,esophageal varices, increased bleeding time (PT/INR), jaundice, hepatic encephalopathy. I hope this helps answer your question. If you have more questions I could give you more technical answers, but try to make my replies understandable to all. , RN PSC 5/07 Listed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Cheryl, I don't know that there is really " stages " of cirrhosis. You either have cirrhosis or you don't. The liver is either still working well and compensating for the cirrhosis, or the liver is non compensating. When the liver is not compensating that is when the person gets liver failure symptoms like: Portal hypertension, ascites,esophageal varices, increased bleeding time (PT/INR), jaundice, hepatic encephalopathy. I hope this helps answer your question. If you have more questions I could give you more technical answers, but try to make my replies understandable to all. , RN PSC 5/07 Listed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Cheryl, I don't know that there is really " stages " of cirrhosis. You either have cirrhosis or you don't. The liver is either still working well and compensating for the cirrhosis, or the liver is non compensating. When the liver is not compensating that is when the person gets liver failure symptoms like: Portal hypertension, ascites,esophageal varices, increased bleeding time (PT/INR), jaundice, hepatic encephalopathy. I hope this helps answer your question. If you have more questions I could give you more technical answers, but try to make my replies understandable to all. , RN PSC 5/07 Listed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Hi I have a question regarding the stages of cirrhosis. I have ascites and my liver functions are elevated but my bilirubin is down. I'm not jaundice but I was told that the MELD score really doesn't benefit those that suffer from PSC. Have you ever heard? Thanks.Serbrina UC '01/PSC '04Sent via BlackBerry by AT&TFrom: "" Date: Fri, 13 Mar 2009 01:27:14 -0000To: < >Subject: Re: liver disease staging Cheryl, I don't know that there is really " stages " of cirrhosis. You either have cirrhosis or you don't. The liver is either still working well and compensating for the cirrhosis, or the liver is non compensating. When the liver is not compensating that is when the person gets liver failure symptoms like: Portal hypertension, ascites,esophageal varices, increased bleeding time (PT/INR), jaundice, hepatic encephalopathy. I hope this helps answer your question. If you have more questions I could give you more technical answers, but try to make my replies understandable to all. , RN PSC 5/07 Listed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Hi I have a question regarding the stages of cirrhosis. I have ascites and my liver functions are elevated but my bilirubin is down. I'm not jaundice but I was told that the MELD score really doesn't benefit those that suffer from PSC. Have you ever heard? Thanks.Serbrina UC '01/PSC '04Sent via BlackBerry by AT&TFrom: "" Date: Fri, 13 Mar 2009 01:27:14 -0000To: < >Subject: Re: liver disease staging Cheryl, I don't know that there is really " stages " of cirrhosis. You either have cirrhosis or you don't. The liver is either still working well and compensating for the cirrhosis, or the liver is non compensating. When the liver is not compensating that is when the person gets liver failure symptoms like: Portal hypertension, ascites,esophageal varices, increased bleeding time (PT/INR), jaundice, hepatic encephalopathy. I hope this helps answer your question. If you have more questions I could give you more technical answers, but try to make my replies understandable to all. , RN PSC 5/07 Listed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Yes, there ARE stages of cirrhosis as well as of PSC. I refer you to Message #83855 dated April 9, 2006 which I'm copying in its entirety below. Thanks to Barb Henshaw!!!! Regards, Carolyn B. in SC ======================== BARB HENSHAW wrote on 9 April 2006: The amount of scar tissue is quantified or " staged " on a scale of 0-4. Stage 0 is no scar tissue, Stage 1 is minimal, Stage 2 is moderate, Stage 3 is moderate-to-severe and Stage 4 is severe scarring of the liver. Stage 4 is also called cirrhosis. The different stages are: Stage 1 Infiltration of the bile duct by lymphocytes with degeneration of the epithelial cells of the bile duct. These findings are not present outside the portal triads. Stage I is referred to as the florid duct lesion or nonsuppurative destructive Cholangitis and is characterized by mononuclear inflammatory cells surrounding a small bile duct Stage 2 There is more widespread involvement with fibrosis, inflammation infiltration in the periportal parenchyma with piecemeal necrosis of the periportal hepatocytes. The portal triads are enlarged but there is relative absence of bile ducts (bile ductopenia). In stage II, there is proliferation of small bile ductules. Stage 3 There are portal-to-portal fibrous bridges with severe degeneration of the ducts and ductopenia. Stage III is characterized by fibrosis or scarring Stage 4 End Stage Liver Disease (ESLD) with frank cirrhosis. These histological stages demonstrate the progression of the disease from destruction of the intrahepatic bile duct to fibrosis and cirrhosis. Histological features of more than one stage can be seen on one liver biopsy. Because of sampling differences, the stages can also vary in liver biopsies done at different times on the same patient. In general, however, there is a gradual progression over years from the histological features of stage I to stage IV. Cirrhosis (an advanced level of fibrosis in the liver) itself breaks down into 3 different stages. 1. " Compensated Cirrhosis " A liver with early cirrhosis can still function quite well and continue to do so for many years. It often has no or just a few symptoms. 2. " Decompensated Cirrhosis " When the liver starts to fail in a significant manner. As liver cells die, the organ makes less of the proteins that regulate fluid retention and blood clotting and loses its ability to metabolize the pigment Bilirubin. This causes symptoms and complications that include: Fatigue, loss of appetite, nausea and vomiting. Weakness, weight loss, fluid accumulation in the legs (edema) and abdomen (ascites). Increased bleeding and bruising, Jaundice, a yellowing of the skin and eyes, and itching. As damage increases, the liver fails to detoxify the blood and becomes less able to metabolize many medications, which magnifies their effects. Eventually, toxins build up in the brain. These changes can produce: Increased sensitivity to drugs, Personality and behavioral changes, including confusion, neglect of appearance, forgetfulness, trouble concentrating and changes in sleep habits. Loss of consciousness and or coma. Scarring also impedes blood flow and increases pressure in the portal vein, which moves blood from the stomach to the liver. This condition is called portal hypertension. Blood vessels in the stomach and esophagus swell, and the body creates new ones in an attempt to bypass the liver. These vessels, called varices, have thin walls. If one bursts, the resulting hemorrhage (major bleeding) can cause death within hours. 3. End Stage. PSC is pure craziness; a person can have any, all, or none of the above symptoms. Some people work up until the day they go in for their transplant, while others can be sick for several years ahead of time. Some are really sick (get Cholangitis attacks over and over) and then seem to get better, for no reason anyone can point to. The only sure thing about PSC is that everyone can be and usually are different! HTH Barb in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Yes, there ARE stages of cirrhosis as well as of PSC. I refer you to Message #83855 dated April 9, 2006 which I'm copying in its entirety below. Thanks to Barb Henshaw!!!! Regards, Carolyn B. in SC ======================== BARB HENSHAW wrote on 9 April 2006: The amount of scar tissue is quantified or " staged " on a scale of 0-4. Stage 0 is no scar tissue, Stage 1 is minimal, Stage 2 is moderate, Stage 3 is moderate-to-severe and Stage 4 is severe scarring of the liver. Stage 4 is also called cirrhosis. The different stages are: Stage 1 Infiltration of the bile duct by lymphocytes with degeneration of the epithelial cells of the bile duct. These findings are not present outside the portal triads. Stage I is referred to as the florid duct lesion or nonsuppurative destructive Cholangitis and is characterized by mononuclear inflammatory cells surrounding a small bile duct Stage 2 There is more widespread involvement with fibrosis, inflammation infiltration in the periportal parenchyma with piecemeal necrosis of the periportal hepatocytes. The portal triads are enlarged but there is relative absence of bile ducts (bile ductopenia). In stage II, there is proliferation of small bile ductules. Stage 3 There are portal-to-portal fibrous bridges with severe degeneration of the ducts and ductopenia. Stage III is characterized by fibrosis or scarring Stage 4 End Stage Liver Disease (ESLD) with frank cirrhosis. These histological stages demonstrate the progression of the disease from destruction of the intrahepatic bile duct to fibrosis and cirrhosis. Histological features of more than one stage can be seen on one liver biopsy. Because of sampling differences, the stages can also vary in liver biopsies done at different times on the same patient. In general, however, there is a gradual progression over years from the histological features of stage I to stage IV. Cirrhosis (an advanced level of fibrosis in the liver) itself breaks down into 3 different stages. 1. " Compensated Cirrhosis " A liver with early cirrhosis can still function quite well and continue to do so for many years. It often has no or just a few symptoms. 2. " Decompensated Cirrhosis " When the liver starts to fail in a significant manner. As liver cells die, the organ makes less of the proteins that regulate fluid retention and blood clotting and loses its ability to metabolize the pigment Bilirubin. This causes symptoms and complications that include: Fatigue, loss of appetite, nausea and vomiting. Weakness, weight loss, fluid accumulation in the legs (edema) and abdomen (ascites). Increased bleeding and bruising, Jaundice, a yellowing of the skin and eyes, and itching. As damage increases, the liver fails to detoxify the blood and becomes less able to metabolize many medications, which magnifies their effects. Eventually, toxins build up in the brain. These changes can produce: Increased sensitivity to drugs, Personality and behavioral changes, including confusion, neglect of appearance, forgetfulness, trouble concentrating and changes in sleep habits. Loss of consciousness and or coma. Scarring also impedes blood flow and increases pressure in the portal vein, which moves blood from the stomach to the liver. This condition is called portal hypertension. Blood vessels in the stomach and esophagus swell, and the body creates new ones in an attempt to bypass the liver. These vessels, called varices, have thin walls. If one bursts, the resulting hemorrhage (major bleeding) can cause death within hours. 3. End Stage. PSC is pure craziness; a person can have any, all, or none of the above symptoms. Some people work up until the day they go in for their transplant, while others can be sick for several years ahead of time. Some are really sick (get Cholangitis attacks over and over) and then seem to get better, for no reason anyone can point to. The only sure thing about PSC is that everyone can be and usually are different! HTH Barb in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 The first half of the post from Barb is stages of PSC, the second half is what I was referring to in my post. There is a progression from compensating cirrhosis to non compensating cirrhosis which leads to end stage liver failure from cirrhosis. (Some may say that is " stages " which is fine, but the doctors I work with in my profession and my doctors at Baylor All Saints say you either have cirrhosis or you don't.) If the cirrhosis is caused say by alcohol consumption then by not drinking alcohol the person can stop/slow down the damage being done to the liver. Therefore the liver may stay in compensating cirrhosis. My meld does not really reflect how sick my liver is either and this is pretty common among PSC patients. How fast or slow each person progresses is different. Since our cirrhosis is not caused by something we have control over (although we can avoid " stuff " we know is toxic to the liver, like alcohol which I know is each person choice and do not really want to open that can of worms) we just have to more or less wait and see how we progress, and how our liver is able to compensate. , RN PSC 5/07 Listed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 A very good, informational post, Barb. Thank you. Don Please be a blood/organ donor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 A very good, informational post, Barb. Thank you. Don Please be a blood/organ donor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 > > It's true you either do have cirrhosis or you don't, but the same can be > said for a pregnancy - you're either pregnant or you're not, there is no > little bit pregnant. Still, even a 9 month pregnancy is broken down > into " stages " or " trimesters " . The same is true for cirrhosis. A > person can stay in compensating cirrhosis for a long time (for Ken it > was 7 years). Staging is just one more way for doctors and patients to > know where they are on this long road. =========================== My thoughts exactly, Barb!! Regards, Carolyn B. in SC (PSC for at least 16 years and now in decompensated cirrhosis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 > > It's true you either do have cirrhosis or you don't, but the same can be > said for a pregnancy - you're either pregnant or you're not, there is no > little bit pregnant. Still, even a 9 month pregnancy is broken down > into " stages " or " trimesters " . The same is true for cirrhosis. A > person can stay in compensating cirrhosis for a long time (for Ken it > was 7 years). Staging is just one more way for doctors and patients to > know where they are on this long road. =========================== My thoughts exactly, Barb!! Regards, Carolyn B. in SC (PSC for at least 16 years and now in decompensated cirrhosis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 > > It's true you either do have cirrhosis or you don't, but the same can be > said for a pregnancy - you're either pregnant or you're not, there is no > little bit pregnant. Still, even a 9 month pregnancy is broken down > into " stages " or " trimesters " . The same is true for cirrhosis. A > person can stay in compensating cirrhosis for a long time (for Ken it > was 7 years). Staging is just one more way for doctors and patients to > know where they are on this long road. =========================== My thoughts exactly, Barb!! Regards, Carolyn B. in SC (PSC for at least 16 years and now in decompensated cirrhosis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 Hi all , very interesting that this topic is coming up now as my 11 year old just had a liver biopsy and colonoscopy this past Tuesday. It has been determined that he has liver fibrosis (not necessarily cirrhosis) in one part (right side of this liver)... It appears to be a result of the beaded intrahepatic bile ducts which are now not blocked as confirmed by MRCP but scarred (beaded).. So, we know this happened and they seem to think it is good news that it is not worse scarring or a higher degree, but how do we know that the progression is haulted now. He still is nauseated, still has that dull ache in his right side, still fatigued. No jaundice, however. So, was it just an attack or is it progressing? This is his second round of a so called attack, the last one being January 2007 when he was diagnosed and then put on Urso and Remicade infusions for the PSC/UC. Our doctor does not recommend the V- oral antibiotic as it may leave him less able to fight off infection down line. We will continue with the Remicade, increase his Urso and may change from Azacol to Colosal as his colon is still ulcerated even though no bloody stools at this time.. For me, I want to see a number on the stage and grading of the disease but our doctor (an awesome man) says even if you do so, it could be years and years of maintaining these numbers, so it is not always wise to try and see the degree of the disease. I guess it would be a stage 2 grade 1 as it is only part of the liver affected. From what I understand fibrosis is not repairable, does anyone know if that is Fact?? Also, what about the LFTs, will they ever go back down? I guess I do not understand that if the liver is damaged, how those LFT could improve if they do at all? We will meet with our doctor on Monday to go over many questions we have but I wanted to be well versed before hand. You guys are so great at sharing valuable info with me. It is soo appreciated. We hope to meet so many of you at the conference but we are strapped for money right now and have not yet submitted our RSVP. We do hope to do so soon. All our love to everyone of you that is going thru similar situations. So, very hard. At Your Service, Stevie Lynn Gedgaudas-Ostos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 Hi all , very interesting that this topic is coming up now as my 11 year old just had a liver biopsy and colonoscopy this past Tuesday. It has been determined that he has liver fibrosis (not necessarily cirrhosis) in one part (right side of this liver)... It appears to be a result of the beaded intrahepatic bile ducts which are now not blocked as confirmed by MRCP but scarred (beaded).. So, we know this happened and they seem to think it is good news that it is not worse scarring or a higher degree, but how do we know that the progression is haulted now. He still is nauseated, still has that dull ache in his right side, still fatigued. No jaundice, however. So, was it just an attack or is it progressing? This is his second round of a so called attack, the last one being January 2007 when he was diagnosed and then put on Urso and Remicade infusions for the PSC/UC. Our doctor does not recommend the V- oral antibiotic as it may leave him less able to fight off infection down line. We will continue with the Remicade, increase his Urso and may change from Azacol to Colosal as his colon is still ulcerated even though no bloody stools at this time.. For me, I want to see a number on the stage and grading of the disease but our doctor (an awesome man) says even if you do so, it could be years and years of maintaining these numbers, so it is not always wise to try and see the degree of the disease. I guess it would be a stage 2 grade 1 as it is only part of the liver affected. From what I understand fibrosis is not repairable, does anyone know if that is Fact?? Also, what about the LFTs, will they ever go back down? I guess I do not understand that if the liver is damaged, how those LFT could improve if they do at all? We will meet with our doctor on Monday to go over many questions we have but I wanted to be well versed before hand. You guys are so great at sharing valuable info with me. It is soo appreciated. We hope to meet so many of you at the conference but we are strapped for money right now and have not yet submitted our RSVP. We do hope to do so soon. All our love to everyone of you that is going thru similar situations. So, very hard. At Your Service, Stevie Lynn Gedgaudas-Ostos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 Hi all , very interesting that this topic is coming up now as my 11 year old just had a liver biopsy and colonoscopy this past Tuesday. It has been determined that he has liver fibrosis (not necessarily cirrhosis) in one part (right side of this liver)... It appears to be a result of the beaded intrahepatic bile ducts which are now not blocked as confirmed by MRCP but scarred (beaded).. So, we know this happened and they seem to think it is good news that it is not worse scarring or a higher degree, but how do we know that the progression is haulted now. He still is nauseated, still has that dull ache in his right side, still fatigued. No jaundice, however. So, was it just an attack or is it progressing? This is his second round of a so called attack, the last one being January 2007 when he was diagnosed and then put on Urso and Remicade infusions for the PSC/UC. Our doctor does not recommend the V- oral antibiotic as it may leave him less able to fight off infection down line. We will continue with the Remicade, increase his Urso and may change from Azacol to Colosal as his colon is still ulcerated even though no bloody stools at this time.. For me, I want to see a number on the stage and grading of the disease but our doctor (an awesome man) says even if you do so, it could be years and years of maintaining these numbers, so it is not always wise to try and see the degree of the disease. I guess it would be a stage 2 grade 1 as it is only part of the liver affected. From what I understand fibrosis is not repairable, does anyone know if that is Fact?? Also, what about the LFTs, will they ever go back down? I guess I do not understand that if the liver is damaged, how those LFT could improve if they do at all? We will meet with our doctor on Monday to go over many questions we have but I wanted to be well versed before hand. You guys are so great at sharing valuable info with me. It is soo appreciated. We hope to meet so many of you at the conference but we are strapped for money right now and have not yet submitted our RSVP. We do hope to do so soon. All our love to everyone of you that is going thru similar situations. So, very hard. At Your Service, Stevie Lynn Gedgaudas-Ostos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 , Thank you so much. I really don't remember where I got this four stages of cirrhosis list, but I didn't make it up. I wish it would come to me. I don't doubt you in any way though. It just drives me crazy that I can't remember things like this. I used to have such a good memory. Entire passages in literature would come to my mind while discussing a short story or a novel as a teacher or as a student. It would impress both my profs and students. Now, I got nothing in recall. Fortunatley, the things I knew long ago before I got sick haven't left. It's just the last ten years or so are very spotty. If I ever find it or see it again, I will certainly share it. Maybe it will be something totally different than I have in my mind. I've got this suspicion that it might have something to do with my old Hep that died from a brain tumor two years ago. If that is the case, I'll never retrieve it. Hope all is well with you, (as well as can be) Cheryl ID Re: liver disease staging > Cheryl, I don't know that there is really " stages " of cirrhosis. You either have cirrhosis or you don't. The liver is either still working well and compensating for the cirrhosis, or the liver is non compensating. When the liver is not compensating that is when the person gets liver failure symptoms like: Portal hypertension, ascites,esophageal varices, increased bleeding time (PT/INR), jaundice, hepatic encephalopathy. > > I hope this helps answer your question. If you have more questions I could give you more technical answers, but try to make my replies understandable to all. > > , RN > PSC 5/07 Listed > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2009 Report Share Posted March 14, 2009 Carolyn, Thank you for saying such nice things. It is actually good to know that I have a place in people's hearts in this group. I sometimes feel so insignificant. I guess I miss the adolations of my students and their parents. I felt like I was really making a contribution when I taught. I am working very hard on my sense of humor and dealing more positively with things. Life got much harder here 1 1/2 years ago when my mother decided to take us up on our long-standing offer of you-can-live-with-us. My step-dad died a bit over 2 years ago. My mother did not need to move in with us, but did it so she could (virtually) give her house to my younger sister who has too many children and not enough money. We all have the best intentions, but it is very difficult on my husband, children, and me. My mother has the best heart in the world, but she takes on everyone's problems (and thinks she's the last line of defense between them and under desolation) and then tries to suck me into it by saying things like, " We have to figure out a way to help your sister/brother/neice/nephew overcome this huge problem that she refuses to acknowledge and address in her own life. " To top it off she has a certain amount of dementia. It is not the way I had hoped to have my relationship with my mother turn out. I did exactly the same thing you did, but didn't have the patience you exhibited. So thank you even more. I'll call Barbara in SLC and make sure she gets it. You have saved my goodwill with Barbara. It is good to hear from you and about you again. Take care, Cheryl ID Re: liver disease staging > > > > > > > What I did was to go to the PSC website and search through messages using the words cirrhosis and stages. (Look at the index on upper left of page, click on " Messages " . Then in the message section there's a box for searching within the messages.) It popped up a zillion and I just kept looking farther and farther back until I found it. > > Does that make sense for you? > > Regards, > Carolyn B. in SC > > > > > Quote Link to comment Share on other sites More sharing options...
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