Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Dear Gloria , I would like to try to take a stab at answering your question. In many cases with hepC, the liver docs have to take a chance with a transplant first-treatment second. The drugs you are taking are like chemo, toxic sommewhere on the same level as alcohol to the liver. Even a Mcs breakfast can be nearly equal to a few beers or a few belts of booze in the toxic department, but we must always weigh the risks with the benefits. The liver is indeed an amazing gland/organ and it's ability to regenerate and heal is amazing. With Cirrhosis, to my understanding there is really no way to tell how far advanced it is, and this is not much use clinically anyway. Far more important is how it affects all the organ systems and if it is either well compensated, or decompensated. Portal hypertension can occur with even a mild case of full blown cirrhosis, on the other hand even a severely damaged liver might hold its own, and the portal hypertension not cause too many problems . Think of it like this- you may have cirrhosis, but that itself is not as significant as this question " how severe is your portal hypertension? Many pediatric liver transplants are done each year by living donor because out of control portal hypertension affects bleeding varicies more than it causes ascites in some kids. Ascites and lab related decompensation Will usually cause a meteoric rise in MELD/PELD score, and lead to transplant. Do you have ascites? How about portal systemic encephalopathy? These things will affect far more when you get a liver transplant than just the condition of your liver in most cases. But this is not true for cases of fulminant hepatic failure. Livers can fail dramatically and suddenly but hopefully this would put you or me at the very top of the list in our perspective regions. Stages and grades are good for pathologists and hepatologists, but are not much use to a cirrhosis patient. Far far more important is whether you have compensated or decompensate liver disease. Remember, decompensation is when ascites, edema, bleeding varicies, hepatorenal syndrome,severe hepatopulmonary syndrome, significant encephalopathy or liver failure occur. I hope this rambling helped. I am not a doctor, and this is all mostly my own opinion, although much of it is gleaned from papers by the well known in the hepatology world. Love, Bobby long life, old age, everything good-Apache prayer ________________________________ To: livercirrhosissupport Sent: Monday, August 17, 2009 10:52:50 PM Subject: Different Liver Cirrhosis Stages Probably because I am just coming out of the after effect of a dose on interferon, some of the questions or comments lots of you have made have started to suddenly rattle around in what's left of my brain. In late January 2009, I was indeed diagnosed with cirrhosis which I believe must be in early stages as my enzymes had just showed the changes. Thus, I was accepted to this latest clinical trial. I do know that away back then, it was suggested to me that they don't like to do transplants unless one can clear the virus and that I would be going to an MRI near the end. Ok, my questions, is it possible that these doctors are perhaps prepping me for a liver transplant if the TX works?? Does anyone know how progressive your cirrhosis has to be and does cirrhosis ever turn back??? Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 what symptons are in compensated? ________________________________ To: livercirrhosissupport Sent: Tuesday, August 18, 2009 4:56:44 AM Subject: Re: Different Liver Cirrhosis Stages Dear Gloria , I would like to try to take a stab at answering your question. In many cases with hepC, the liver docs have to take a chance with a transplant first-treatment second. The drugs you are taking are like chemo, toxic sommewhere on the same level as alcohol to the liver. Even a Mcs breakfast can be nearly equal to a few beers or a few belts of booze in the toxic department, but we must always weigh the risks with the benefits. The liver is indeed an amazing gland/organ and it's ability to regenerate and heal is amazing. With Cirrhosis, to my understanding there is really no way to tell how far advanced it is, and this is not much use clinically anyway. Far more important is how it affects all the organ systems and if it is either well compensated, or decompensated. Portal hypertension can occur with even a mild case of full blown cirrhosis, on the other hand even a severely damaged liver might hold its own, and the portal hypertension not cause too many problems . Think of it like this- you may have cirrhosis, but that itself is not as significant as this question " how severe is your portal hypertension? Many pediatric liver transplants are done each year by living donor because out of control portal hypertension affects bleeding varicies more than it causes ascites in some kids. Ascites and lab related decompensation Will usually cause a meteoric rise in MELD/PELD score, and lead to transplant. Do you have ascites? How about portal systemic encephalopathy? These things will affect far more when you get a liver transplant than just the condition of your liver in most cases. But this is not true for cases of fulminant hepatic failure. Livers can fail dramatically and suddenly but hopefully this would put you or me at the very top of the list in our perspective regions. Stages and grades are good for pathologists and hepatologists, but are not much use to a cirrhosis patient. Far far more important is whether you have compensated or decompensate liver disease. Remember, decompensation is when ascites, edema, bleeding varicies, hepatorenal syndrome,severe hepatopulmonary syndrome, significant encephalopathy or liver failure occur. I hope this rambling helped. I am not a doctor, and this is all mostly my own opinion, although much of it is gleaned from papers by the well known in the hepatology world. Love, Bobby long life, old age, everything good-Apache prayer ____________ _________ _________ __ From: Gloria <gadamscanyahoo (DOT) ca> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Monday, August 17, 2009 10:52:50 PM Subject: Different Liver Cirrhosis Stages Probably because I am just coming out of the after effect of a dose on interferon, some of the questions or comments lots of you have made have started to suddenly rattle around in what's left of my brain. In late January 2009, I was indeed diagnosed with cirrhosis which I believe must be in early stages as my enzymes had just showed the changes. Thus, I was accepted to this latest clinical trial. I do know that away back then, it was suggested to me that they don't like to do transplants unless one can clear the virus and that I would be going to an MRI near the end. Ok, my questions, is it possible that these doctors are perhaps prepping me for a liver transplant if the TX works?? Does anyone know how progressive your cirrhosis has to be and does cirrhosis ever turn back??? Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Bobby - since my kidney function is going down, about 30% at present, that would mean then that I would be considered decompensated since other organs are getting involved? Jan H On Tue, Aug 18, 2009 at 5:56 AM, Bob Aragon wrote: > Dear Gloria , I would like to try to take a > stab at answering your question. In many > cases with hepC, the liver docs have to take a chance > with a transplant first-treatment second. > The drugs you are taking are like chemo, toxic > sommewhere on the same level as alcohol to the liver. > Even a Mcs breakfast can be nearly equal to a few beers or > a few belts of booze in the toxic department, but we must always > weigh the risks with the benefits. The liver is indeed an amazing > gland/organ and it's ability to regenerate and heal is amazing. > > With Cirrhosis, to my understanding there is really no way to > tell how far advanced it is, and this is not much use clinically anyway. > Far more important is how it affects all the organ systems and if it is > either well compensated, or decompensated. > Portal hypertension can occur with even a mild case of full blown > cirrhosis, on the other hand > even a severely damaged liver might hold its own, and the portal > hypertension > not cause too many problems . > Think of it like this- you may have cirrhosis, but that itself is not as > significant > as this question " how severe is your portal hypertension? Many pediatric > liver transplants > are done each year by living donor because > out of control portal hypertension affects bleeding varicies more than it > causes > ascites in some kids. Ascites and lab related decompensation > Will usually cause a meteoric rise in MELD/PELD score, and lead to > transplant. > Do you have ascites? How > about portal systemic encephalopathy? > These things will affect far more when you get a liver transplant than just > the condition of your liver > in most cases. But this is not true for cases of fulminant hepatic failure. > Livers can fail dramatically and suddenly > but hopefully this would put you or me at the very top of the list in our > perspective regions. > Stages and grades are good for pathologists and hepatologists, but are not > much use to a cirrhosis patient. > Far far more important is whether you have compensated or decompensate > liver disease. > Remember, decompensation is when ascites, edema, bleeding varicies, > hepatorenal syndrome,severe hepatopulmonary syndrome, significant > encephalopathy or > liver failure occur. > I hope this rambling helped. I am not a doctor, and this is all mostly my > own opinion, although much of it is gleaned > from papers by the well known in the hepatology world. Love, Bobby > > > > long life, old age, everything good-Apache prayer > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Monday, August 17, 2009 10:52:50 PM > Subject: Different Liver Cirrhosis Stages > > > Probably because I am just coming out of the after effect of a dose on > interferon, some of the questions or comments lots of you have made have > started to suddenly rattle around in what's left of my brain. > > In late January 2009, I was indeed diagnosed with cirrhosis which I believe > must be in early stages as my enzymes had just showed the changes. Thus, I > was accepted to this latest clinical trial. I do know that away back then, > it was suggested to me that they don't like to do transplants unless one can > clear the virus and that I would be going to an MRI near the end. > > Ok, my questions, is it possible that these doctors are perhaps prepping me > for a liver transplant if the TX works?? Does anyone know how progressive > your cirrhosis has to be and does cirrhosis ever turn back??? > > Gloria > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 I just discovered a site called Answer something or other. Supposed to have 28 doctors on call to answer questions. I decided I would check it out. First had to register so now I suppose I will get lots of spam. Then I had to choose the area of specialty. I chose gastro. I asked " What is stage four cirrhosis " or something like that. Next window introduced me to the doctor who had received my question. Supposedly my question fell under his specialty. He was a sports medicine doctor among other things. A pop up asked how much I would be willing to pay if I was satisfied with his answer. Three choices were given. The middle one was about $40.00. I figured I could get and have gotten better answers here for no money, so tried to back out of the site. It fought me until I told it to close about 4 or more times. Thought I would warn everybody away from it. Jan H > Bobby - since my kidney function is going down, about 30% at present, that > would mean then that I would be considered decompensated since other organs > are getting involved? Jan H > > On Tue, Aug 18, 2009 at 5:56 AM, Bob Aragon wrote: > >> Dear Gloria , I would like to try to take a >> stab at answering your question. In many >> cases with hepC, the liver docs have to take a chance >> with a transplant first-treatment second. >> The drugs you are taking are like chemo, toxic >> sommewhere on the same level as alcohol to the liver. >> Even a Mcs breakfast can be nearly equal to a few beers or >> a few belts of booze in the toxic department, but we must always >> weigh the risks with the benefits. The liver is indeed an amazing >> gland/organ and it's ability to regenerate and heal is amazing. >> >> With Cirrhosis, to my understanding there is really no way to >> tell how far advanced it is, and this is not much use clinically anyway. >> Far more important is how it affects all the organ systems and if it is >> either well compensated, or decompensated. >> Portal hypertension can occur with even a mild case of full blown >> cirrhosis, on the other hand >> even a severely damaged liver might hold its own, and the portal >> hypertension >> not cause too many problems . >> Think of it like this- you may have cirrhosis, but that itself is not as >> significant >> as this question " how severe is your portal hypertension? Many pediatric >> liver transplants >> are done each year by living donor because >> out of control portal hypertension affects bleeding varicies more than it >> causes >> ascites in some kids. Ascites and lab related decompensation >> Will usually cause a meteoric rise in MELD/PELD score, and lead to >> transplant. >> Do you have ascites? How >> about portal systemic encephalopathy? >> These things will affect far more when you get a liver transplant than >> just the condition of your liver >> in most cases. But this is not true for cases of fulminant hepatic >> failure. Livers can fail dramatically and suddenly >> but hopefully this would put you or me at the very top of the list in our >> perspective regions. >> Stages and grades are good for pathologists and hepatologists, but are not >> much use to a cirrhosis patient. >> Far far more important is whether you have compensated or decompensate >> liver disease. >> Remember, decompensation is when ascites, edema, bleeding varicies, >> hepatorenal syndrome,severe hepatopulmonary syndrome, significant >> encephalopathy or >> liver failure occur. >> I hope this rambling helped. I am not a doctor, and this is all mostly my >> own opinion, although much of it is gleaned >> from papers by the well known in the hepatology world. Love, Bobby >> >> >> >> long life, old age, everything good-Apache prayer >> >> >> >> >> ________________________________ >> >> To: livercirrhosissupport >> Sent: Monday, August 17, 2009 10:52:50 PM >> Subject: Different Liver Cirrhosis Stages >> >> >> Probably because I am just coming out of the after effect of a dose on >> interferon, some of the questions or comments lots of you have made have >> started to suddenly rattle around in what's left of my brain. >> >> In late January 2009, I was indeed diagnosed with cirrhosis which I >> believe must be in early stages as my enzymes had just showed the changes. >> Thus, I was accepted to this latest clinical trial. I do know that away >> back then, it was suggested to me that they don't like to do transplants >> unless one can clear the virus and that I would be going to an MRI near the >> end. >> >> Ok, my questions, is it possible that these doctors are perhaps prepping >> me for a liver transplant if the TX works?? Does anyone know how >> progressive your cirrhosis has to be and does cirrhosis ever turn back??? >> >> Gloria >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Hi everyone..thank you all very much for your replies and encouragement..my endoscope was good with several small varices that did not need banding..will know results of MRI in several days..you all hang in there and I will try my best to do the same..depression comes at me from my mothers side I suppose, but is worsened by my disease..just got back from the city, and a bit fatigued, so will post more later on..again I thank you, and I am sorry if I awoke any sleeping giants. peace, Dave ________________________________ To: livercirrhosissupport Sent: Tuesday, August 18, 2009 11:44:22 AM Subject: Re: Different Liver Cirrhosis Stages I just discovered a site called Answer something or other. Supposed to have 28 doctors on call to answer questions. I decided I would check it out. First had to register so now I suppose I will get lots of spam. Then I had to choose the area of specialty. I chose gastro. I asked " What is stage four cirrhosis " or something like that. Next window introduced me to the doctor who had received my question. Supposedly my question fell under his specialty. He was a sports medicine doctor among other things. A pop up asked how much I would be willing to pay if I was satisfied with his answer. Three choices were given. The middle one was about $40.00. I figured I could get and have gotten better answers here for no money, so tried to back out of the site. It fought me until I told it to close about 4 or more times. Thought I would warn everybody away from it. Jan H On Tue, Aug 18, 2009 at 9:37 AM, Jan Holman <janholmangmail (DOT) com> wrote: > Bobby - since my kidney function is going down, about 30% at present, that > would mean then that I would be considered decompensated since other organs > are getting involved? Jan H > > On Tue, Aug 18, 2009 at 5:56 AM, Bob Aragon <robwalkingeagle@ yahoo.com>wrote: > >> Dear Gloria , I would like to try to take a >> stab at answering your question. In many >> cases with hepC, the liver docs have to take a chance >> with a transplant first-treatment second. >> The drugs you are taking are like chemo, toxic >> sommewhere on the same level as alcohol to the liver. >> Even a Mcs breakfast can be nearly equal to a few beers or >> a few belts of booze in the toxic department, but we must always >> weigh the risks with the benefits. The liver is indeed an amazing >> gland/organ and it's ability to regenerate and heal is amazing. >> >> With Cirrhosis, to my understanding there is really no way to >> tell how far advanced it is, and this is not much use clinically anyway. >> Far more important is how it affects all the organ systems and if it is >> either well compensated, or decompensated. >> Portal hypertension can occur with even a mild case of full blown >> cirrhosis, on the other hand >> even a severely damaged liver might hold its own, and the portal >> hypertension >> not cause too many problems . >> Think of it like this- you may have cirrhosis, but that itself is not as >> significant >> as this question " how severe is your portal hypertension? Many pediatric >> liver transplants >> are done each year by living donor because >> out of control portal hypertension affects bleeding varicies more than it >> causes >> ascites in some kids. Ascites and lab related decompensation >> Will usually cause a meteoric rise in MELD/PELD score, and lead to >> transplant. >> Do you have ascites? How >> about portal systemic encephalopathy? >> These things will affect far more when you get a liver transplant than >> just the condition of your liver >> in most cases. But this is not true for cases of fulminant hepatic >> failure. Livers can fail dramatically and suddenly >> but hopefully this would put you or me at the very top of the list in our >> perspective regions. >> Stages and grades are good for pathologists and hepatologists, but are not >> much use to a cirrhosis patient. >> Far far more important is whether you have compensated or decompensate >> liver disease. >> Remember, decompensation is when ascites, edema, bleeding varicies, >> hepatorenal syndrome,severe hepatopulmonary syndrome, significant >> encephalopathy or >> liver failure occur. >> I hope this rambling helped. I am not a doctor, and this is all mostly my >> own opinion, although much of it is gleaned >> from papers by the well known in the hepatology world. Love, Bobby >> >> >> >> long life, old age, everything good-Apache prayer >> >> >> >> >> ____________ _________ _________ __ >> From: Gloria <gadamscanyahoo (DOT) ca> >> To: livercirrhosissuppo rtyahoogroups (DOT) com >> Sent: Monday, August 17, 2009 10:52:50 PM >> Subject: Different Liver Cirrhosis Stages >> >> >> Probably because I am just coming out of the after effect of a dose on >> interferon, some of the questions or comments lots of you have made have >> started to suddenly rattle around in what's left of my brain. >> >> In late January 2009, I was indeed diagnosed with cirrhosis which I >> believe must be in early stages as my enzymes had just showed the changes. >> Thus, I was accepted to this latest clinical trial. I do know that away >> back then, it was suggested to me that they don't like to do transplants >> unless one can clear the virus and that I would be going to an MRI near the >> end. >> >> Ok, my questions, is it possible that these doctors are perhaps prepping >> me for a liver transplant if the TX works?? Does anyone know how >> progressive your cirrhosis has to be and does cirrhosis ever turn back??? >> >> Gloria >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Thank you Bobby - no one has ever told me whether I have compensated or decompensated liver. I have been checked for ascites and it appears that I don't have any thus far even though I feel like a fat cow !! Good thing I've hated Mc's for years heh?? I do have some very distasteful " blackish " discharge almost 5 out of 7 nights now. It's been a nightmare to get the Dr's to actually pay attention to what I have been saying for over two years and recently I took in the evidence. It appears that created some action!!! Gloria ________________________________ Dear Gloria , I would like to try to take a stab at answering your question. In many cases with hepC, the liver docs have to take a chance with a transplant first-treatment second. The drugs you are taking are like chemo, toxic sommewhere on the same level as alcohol to the liver. Even a Mcs breakfast can be nearly equal to a few beers or a few belts of booze in the toxic department, but we must always weigh the risks with the benefits. The liver is indeed an amazing gland/organ and it's ability to regenerate and heal is amazing. With Cirrhosis, to my understanding there is really no way to tell how far advanced it is, and this is not much use clinically anyway. Far more important is how it affects all the organ systems and if it is either well compensated, or decompensated. Portal hypertension can occur with even a mild case of full blown cirrhosis, on the other hand even a severely damaged liver might hold its own, and the portal hypertension not cause too many problems . Think of it like this- you may have cirrhosis, but that itself is not as significant as this question " how severe is your portal hypertension? Many pediatric liver transplants are done each year by living donor because out of control portal hypertension affects bleeding varicies more than it causes ascites in some kids. Ascites and lab related decompensation Will usually cause a meteoric rise in MELD/PELD score, and lead to transplant. Do you have ascites? How about portal systemic encephalopathy? These things will affect far more when you get a liver transplant than just the condition of your liver in most cases. But this is not true for cases of fulminant hepatic failure. Livers can fail dramatically and suddenly but hopefully this would put you or me at the very top of the list in our perspective regions. Stages and grades are good for pathologists and hepatologists, but are not much use to a cirrhosis patient. Far far more important is whether you have compensated or decompensate liver disease. Remember, decompensation is when ascites, edema, bleeding varicies, hepatorenal syndrome,severe hepatopulmonary syndrome, significant encephalopathy or liver failure occur. I hope this rambling helped. I am not a doctor, and this is all mostly my own opinion, although much of it is gleaned from papers by the well known in the hepatology world. Love, Bobby long life, old age, everything good-Apache prayer ____________ _________ _________ __ From: Gloria <gadamscanyahoo (DOT) ca> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Monday, August 17, 2009 10:52:50 PM Subject: Different Liver Cirrhosis Stages Probably because I am just coming out of the after effect of a dose on interferon, some of the questions or comments lots of you have made have started to suddenly rattle around in what's left of my brain. In late January 2009, I was indeed diagnosed with cirrhosis which I believe must be in early stages as my enzymes had just showed the changes. Thus, I was accepted to this latest clinical trial. I do know that away back then, it was suggested to me that they don't like to do transplants unless one can clear the virus and that I would be going to an MRI near the end. Ok, my questions, is it possible that these doctors are perhaps prepping me for a liver transplant if the TX works?? Does anyone know how progressive your cirrhosis has to be and does cirrhosis ever turn back??? Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Well compensated liver disease can still include a number of symptoms. I have hepatic encephalopathy, but it is not deemed to be severe enough to be put on the transplant list. The AASLD, or American Association for the study of liver diseases is the board that many transplant programs base thier programs on, or at least the criteria. It is sad that even some people in this group have a loved one who sees a doctor who does not recognize the signs of decompensated liver disease. My own PCP did not know the difference between the two, and since I did not have any signs of decompensated liver disease, deemed me to be liver disease free. The guidlines can be found in our group files section here- http://health.groups.yahoo.com/group/livercirrhosissupport/files/ pdf here- http://f1.grp.yahoofs.com/v1/MPqKSiP-WloWRa2v4FCCFHpmg13gbG5kgDnZnm3q8G6P8PbHdla\ utPQM8xu1jZH8TxY-iUddoaqi8Ctr4uSn/evalu_patient_livertransplantation.pdf and here is a direct quote. Recommendations 1. Patients with cirrhosis should be referred for transplantation when they develop evidence of hepatic dysfunction (CTP > 7 and MELD > 10) or when they experience their first major complication (ascites, variceal bleeding, or hepatic encephalopathy) (II-3). 2. Children with chronic liver disease should be referred when they deviate from normal growth curves or develop evidence of hepatic dysfunction or portal hypertension (II-3). 3. Patients with type I hepatorenal syndrome should have an expedited referral for liver transplantation (II-3). all of these are considered decompensated. CTP stands for Child Turcotte Pugh scoring system. Love, Bobby ________________________________ To: livercirrhosissupport Sent: Tuesday, August 18, 2009 9:51:02 AM Subject: Re: Different Liver Cirrhosis Stages what symptons are in compensated? ____________ _________ _________ __ From: Bob Aragon <robwalkingeagle@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Tuesday, August 18, 2009 4:56:44 AM Subject: Re: Different Liver Cirrhosis Stages Dear Gloria , I would like to try to take a stab at answering your question. In many cases with hepC, the liver docs have to take a chance with a transplant first-treatment second. The drugs you are taking are like chemo, toxic sommewhere on the same level as alcohol to the liver. Even a Mcs breakfast can be nearly equal to a few beers or a few belts of booze in the toxic department, but we must always weigh the risks with the benefits. The liver is indeed an amazing gland/organ and it's ability to regenerate and heal is amazing. With Cirrhosis, to my understanding there is really no way to tell how far advanced it is, and this is not much use clinically anyway. Far more important is how it affects all the organ systems and if it is either well compensated, or decompensated. Portal hypertension can occur with even a mild case of full blown cirrhosis, on the other hand even a severely damaged liver might hold its own, and the portal hypertension not cause too many problems . Think of it like this- you may have cirrhosis, but that itself is not as significant as this question " how severe is your portal hypertension? Many pediatric liver transplants are done each year by living donor because out of control portal hypertension affects bleeding varicies more than it causes ascites in some kids. Ascites and lab related decompensation Will usually cause a meteoric rise in MELD/PELD score, and lead to transplant. Do you have ascites? How about portal systemic encephalopathy? These things will affect far more when you get a liver transplant than just the condition of your liver in most cases. But this is not true for cases of fulminant hepatic failure. Livers can fail dramatically and suddenly but hopefully this would put you or me at the very top of the list in our perspective regions. Stages and grades are good for pathologists and hepatologists, but are not much use to a cirrhosis patient. Far far more important is whether you have compensated or decompensate liver disease. Remember, decompensation is when ascites, edema, bleeding varicies, hepatorenal syndrome,severe hepatopulmonary syndrome, significant encephalopathy or liver failure occur. I hope this rambling helped. I am not a doctor, and this is all mostly my own opinion, although much of it is gleaned from papers by the well known in the hepatology world. Love, Bobby long life, old age, everything good-Apache prayer ____________ _________ _________ __ From: Gloria <gadamscanyahoo (DOT) ca> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Monday, August 17, 2009 10:52:50 PM Subject: Different Liver Cirrhosis Stages Probably because I am just coming out of the after effect of a dose on interferon, some of the questions or comments lots of you have made have started to suddenly rattle around in what's left of my brain. In late January 2009, I was indeed diagnosed with cirrhosis which I believe must be in early stages as my enzymes had just showed the changes. Thus, I was accepted to this latest clinical trial. I do know that away back then, it was suggested to me that they don't like to do transplants unless one can clear the virus and that I would be going to an MRI near the end. Ok, my questions, is it possible that these doctors are perhaps prepping me for a liver transplant if the TX works?? Does anyone know how progressive your cirrhosis has to be and does cirrhosis ever turn back??? Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Jan, your kidney function loss may well be considered hepatorenal syndrome. You have described a lot abour your situation, but have you been seen at a transplant hospital even though you are sure you will not get a transplant? Am I just confused? Love, Bobby long life, old age, everything good-Apache prayer ________________________________ To: livercirrhosissupport Sent: Tuesday, August 18, 2009 10:37:52 AM Subject: Re: Different Liver Cirrhosis Stages Bobby - since my kidney function is going down, about 30% at present, that would mean then that I would be considered decompensated since other organs are getting involved? Jan H On Tue, Aug 18, 2009 at 5:56 AM, Bob Aragon <robwalkingeagle@ yahoo.com>wrote: > Dear Gloria , I would like to try to take a > stab at answering your question. In many > cases with hepC, the liver docs have to take a chance > with a transplant first-treatment second. > The drugs you are taking are like chemo, toxic > sommewhere on the same level as alcohol to the liver. > Even a Mcs breakfast can be nearly equal to a few beers or > a few belts of booze in the toxic department, but we must always > weigh the risks with the benefits. The liver is indeed an amazing > gland/organ and it's ability to regenerate and heal is amazing. > > With Cirrhosis, to my understanding there is really no way to > tell how far advanced it is, and this is not much use clinically anyway. > Far more important is how it affects all the organ systems and if it is > either well compensated, or decompensated. > Portal hypertension can occur with even a mild case of full blown > cirrhosis, on the other hand > even a severely damaged liver might hold its own, and the portal > hypertension > not cause too many problems . > Think of it like this- you may have cirrhosis, but that itself is not as > significant > as this question " how severe is your portal hypertension? Many pediatric > liver transplants > are done each year by living donor because > out of control portal hypertension affects bleeding varicies more than it > causes > ascites in some kids. Ascites and lab related decompensation > Will usually cause a meteoric rise in MELD/PELD score, and lead to > transplant. > Do you have ascites? How > about portal systemic encephalopathy? > These things will affect far more when you get a liver transplant than just > the condition of your liver > in most cases. But this is not true for cases of fulminant hepatic failure. > Livers can fail dramatically and suddenly > but hopefully this would put you or me at the very top of the list in our > perspective regions. > Stages and grades are good for pathologists and hepatologists, but are not > much use to a cirrhosis patient. > Far far more important is whether you have compensated or decompensate > liver disease. > Remember, decompensation is when ascites, edema, bleeding varicies, > hepatorenal syndrome,severe hepatopulmonary syndrome, significant > encephalopathy or > liver failure occur. > I hope this rambling helped. I am not a doctor, and this is all mostly my > own opinion, although much of it is gleaned > from papers by the well known in the hepatology world. Love, Bobby > > > > long life, old age, everything good-Apache prayer > > > > > ____________ _________ _________ __ > From: Gloria <gadamscanyahoo (DOT) ca> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Monday, August 17, 2009 10:52:50 PM > Subject: Different Liver Cirrhosis Stages > > > Probably because I am just coming out of the after effect of a dose on > interferon, some of the questions or comments lots of you have made have > started to suddenly rattle around in what's left of my brain. > > In late January 2009, I was indeed diagnosed with cirrhosis which I believe > must be in early stages as my enzymes had just showed the changes. Thus, I > was accepted to this latest clinical trial. I do know that away back then, > it was suggested to me that they don't like to do transplants unless one can > clear the virus and that I would be going to an MRI near the end. > > Ok, my questions, is it possible that these doctors are perhaps prepping me > for a liver transplant if the TX works?? Does anyone know how progressive > your cirrhosis has to be and does cirrhosis ever turn back??? > > Gloria > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 A couple of years after being diagnosed, I went to the Mayo Clinic in Phoenix to get some clarification because I was getting different information from the gastro who did the diagnosis with a biopsy, and a transplant center. The people at the transplant center were very rude, abrupt, insulting almost. That is why I wanted to go to Mayo since I am from Minnesota originally and Mayo is next to God there. I felt I could trust them. Both the transplant center and Mayo told me that I would not qualify for a transplant in Arizona, Mayo said I possibly could in a couple of other states, specifically MN and Florida. They encouraged me to look for a donor kidney , but I couldn't do that. Decided that at my age and state of general health it wasn't worth fighting for right now. I have had 17 angioplasties/angiograms with 9 stents placed. Carotid artery surgery, kidney function is at 30% and I have a number of other medical conditions. Currently, I am being seen by specialists for some conditions which might be caused by the cirrhosis, such as the kidney disease. It is the feeling of the kidney doctor that it is caused by lack of liver function. I was just told when I had my last angioplasty that if my kidneys deteriorate much more, they won't do angioplasties on me either. I have appt with both my cardio and the kidney doctors coming up soon, so will be talking to them. My blood work doesn't show much related to liver problems, except for the increasing creatinine levels. I asked the question because you had mentioned hepatorenal syndrome. I am sure with all the above, I must have answered your question, and much more. lol. If not, feel free to ask more questions. Jan H On Tue, Aug 18, 2009 at 12:32 PM, Bob Aragon wrote: > Jan, your kidney function loss may well be considered hepatorenal syndrome. > You have described a lot abour your situation, but have you been seen at a > transplant hospital even though you are sure you will not get a transplant? > Am I just confused? Love, Bobby > > long life, old age, everything good-Apache prayer > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Tuesday, August 18, 2009 10:37:52 AM > Subject: Re: Different Liver Cirrhosis Stages > > > Bobby - since my kidney function is going down, about 30% at present, that > would mean then that I would be considered decompensated since other organs > are getting involved? Jan H > > On Tue, Aug 18, 2009 at 5:56 AM, Bob Aragon <robwalkingeagle@ yahoo.com > >wrote: > > > Dear Gloria , I would like to try to take a > > stab at answering your question. In many > > cases with hepC, the liver docs have to take a chance > > with a transplant first-treatment second. > > The drugs you are taking are like chemo, toxic > > sommewhere on the same level as alcohol to the liver. > > Even a Mcs breakfast can be nearly equal to a few beers or > > a few belts of booze in the toxic department, but we must always > > weigh the risks with the benefits. The liver is indeed an amazing > > gland/organ and it's ability to regenerate and heal is amazing. > > > > With Cirrhosis, to my understanding there is really no way to > > tell how far advanced it is, and this is not much use clinically anyway. > > Far more important is how it affects all the organ systems and if it is > > either well compensated, or decompensated. > > Portal hypertension can occur with even a mild case of full blown > > cirrhosis, on the other hand > > even a severely damaged liver might hold its own, and the portal > > hypertension > > not cause too many problems . > > Think of it like this- you may have cirrhosis, but that itself is not as > > significant > > as this question " how severe is your portal hypertension? Many pediatric > > liver transplants > > are done each year by living donor because > > out of control portal hypertension affects bleeding varicies more than it > > causes > > ascites in some kids. Ascites and lab related decompensation > > Will usually cause a meteoric rise in MELD/PELD score, and lead to > > transplant. > > Do you have ascites? How > > about portal systemic encephalopathy? > > These things will affect far more when you get a liver transplant than > just > > the condition of your liver > > in most cases. But this is not true for cases of fulminant hepatic > failure. > > Livers can fail dramatically and suddenly > > but hopefully this would put you or me at the very top of the list in our > > perspective regions. > > Stages and grades are good for pathologists and hepatologists, but are > not > > much use to a cirrhosis patient. > > Far far more important is whether you have compensated or decompensate > > liver disease. > > Remember, decompensation is when ascites, edema, bleeding varicies, > > hepatorenal syndrome,severe hepatopulmonary syndrome, significant > > encephalopathy or > > liver failure occur. > > I hope this rambling helped. I am not a doctor, and this is all mostly my > > own opinion, although much of it is gleaned > > from papers by the well known in the hepatology world. Love, Bobby > > > > > > > > long life, old age, everything good-Apache prayer > > > > > > > > > > ____________ _________ _________ __ > > From: Gloria <gadamscanyahoo (DOT) ca> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Monday, August 17, 2009 10:52:50 PM > > Subject: Different Liver Cirrhosis Stages > > > > > > Probably because I am just coming out of the after effect of a dose on > > interferon, some of the questions or comments lots of you have made have > > started to suddenly rattle around in what's left of my brain. > > > > In late January 2009, I was indeed diagnosed with cirrhosis which I > believe > > must be in early stages as my enzymes had just showed the changes. Thus, > I > > was accepted to this latest clinical trial. I do know that away back > then, > > it was suggested to me that they don't like to do transplants unless one > can > > clear the virus and that I would be going to an MRI near the end. > > > > Ok, my questions, is it possible that these doctors are perhaps prepping > me > > for a liver transplant if the TX works?? Does anyone know how > progressive > > your cirrhosis has to be and does cirrhosis ever turn back??? > > > > Gloria > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Dave, glad to hear things went well with the scope. Praying you get a peaceful rest and are feeling better when you awaken. Warm Hugs........... Diane http://auntdisexperimentallife.blogspot.com/ ________________________________ To: livercirrhosissupport Sent: Tuesday, August 18, 2009 12:23:32 PM Subject: Re: Different Liver Cirrhosis Stages Hi everyone..thank you all very much for your replies and encouragement. .my endoscope was good with several small varices that did not need banding..will know results of MRI in several days..you all hang in there and I will try my best to do the same..depression comes at me from my mothers side I suppose, but is worsened by my disease..just got back from the city, and a bit fatigued, so will post more later on..again I thank you, and I am sorry if I awoke any sleeping giants. peace, Dave ____________ _________ _________ __ From: Jan Holman <janholmangmail (DOT) com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Tuesday, August 18, 2009 11:44:22 AM Subject: Re: Different Liver Cirrhosis Stages I just discovered a site called Answer something or other. Supposed to have 28 doctors on call to answer questions. I decided I would check it out. First had to register so now I suppose I will get lots of spam. Then I had to choose the area of specialty. I chose gastro. I asked " What is stage four cirrhosis " or something like that. Next window introduced me to the doctor who had received my question. Supposedly my question fell under his specialty. He was a sports medicine doctor among other things. A pop up asked how much I would be willing to pay if I was satisfied with his answer. Three choices were given. The middle one was about $40.00. I figured I could get and have gotten better answers here for no money, so tried to back out of the site. It fought me until I told it to close about 4 or more times. Thought I would warn everybody away from it. Jan H On Tue, Aug 18, 2009 at 9:37 AM, Jan Holman <janholmangmail (DOT) com> wrote: > Bobby - since my kidney function is going down, about 30% at present, that > would mean then that I would be considered decompensated since other organs > are getting involved? Jan H > > On Tue, Aug 18, 2009 at 5:56 AM, Bob Aragon <robwalkingeagle@ yahoo.com>wrote: > >> Dear Gloria , I would like to try to take a >> stab at answering your question. In many >> cases with hepC, the liver docs have to take a chance >> with a transplant first-treatment second. >> The drugs you are taking are like chemo, toxic >> sommewhere on the same level as alcohol to the liver. >> Even a Mcs breakfast can be nearly equal to a few beers or >> a few belts of booze in the toxic department, but we must always >> weigh the risks with the benefits. The liver is indeed an amazing >> gland/organ and it's ability to regenerate and heal is amazing. >> >> With Cirrhosis, to my understanding there is really no way to >> tell how far advanced it is, and this is not much use clinically anyway. >> Far more important is how it affects all the organ systems and if it is >> either well compensated, or decompensated. >> Portal hypertension can occur with even a mild case of full blown >> cirrhosis, on the other hand >> even a severely damaged liver might hold its own, and the portal >> hypertension >> not cause too many problems . >> Think of it like this- you may have cirrhosis, but that itself is not as >> significant >> as this question " how severe is your portal hypertension? Many pediatric >> liver transplants >> are done each year by living donor because >> out of control portal hypertension affects bleeding varicies more than it >> causes >> ascites in some kids. Ascites and lab related decompensation >> Will usually cause a meteoric rise in MELD/PELD score, and lead to >> transplant. >> Do you have ascites? How >> about portal systemic encephalopathy? >> These things will affect far more when you get a liver transplant than >> just the condition of your liver >> in most cases. But this is not true for cases of fulminant hepatic >> failure. Livers can fail dramatically and suddenly >> but hopefully this would put you or me at the very top of the list in our >> perspective regions. >> Stages and grades are good for pathologists and hepatologists, but are not >> much use to a cirrhosis patient. >> Far far more important is whether you have compensated or decompensate >> liver disease. >> Remember, decompensation is when ascites, edema, bleeding varicies, >> hepatorenal syndrome,severe hepatopulmonary syndrome, significant >> encephalopathy or >> liver failure occur. >> I hope this rambling helped. I am not a doctor, and this is all mostly my >> own opinion, although much of it is gleaned >> from papers by the well known in the hepatology world. Love, Bobby >> >> >> >> long life, old age, everything good-Apache prayer >> >> >> >> >> ____________ _________ _________ __ >> From: Gloria <gadamscanyahoo (DOT) ca> >> To: livercirrhosissuppo rtyahoogroups (DOT) com >> Sent: Monday, August 17, 2009 10:52:50 PM >> Subject: Different Liver Cirrhosis Stages >> >> >> Probably because I am just coming out of the after effect of a dose on >> interferon, some of the questions or comments lots of you have made have >> started to suddenly rattle around in what's left of my brain. >> >> In late January 2009, I was indeed diagnosed with cirrhosis which I >> believe must be in early stages as my enzymes had just showed the changes. >> Thus, I was accepted to this latest clinical trial. I do know that away >> back then, it was suggested to me that they don't like to do transplants >> unless one can clear the virus and that I would be going to an MRI near the >> end. >> >> Ok, my questions, is it possible that these doctors are perhaps prepping >> me for a liver transplant if the TX works?? Does anyone know how >> progressive your cirrhosis has to be and does cirrhosis ever turn back??? >> >> Gloria >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 hello ev1 i have not been on in awhile. my husband has a new liver and hes more yellow now with this one than the bad one he had. they said that the hep c has attack this liver already and that it will destroy it within 30 days so i think that he will need another transplant. i hope that he doesn't have to go through all this again. and whats saying there will another liver available right away. all bum out again. linda > >> Dear Gloria , I would like to try to take a >> stab at answering your question. In many >> cases with hepC, the liver docs have to take a chance >> with a transplant first-treatment second. >> The drugs you are taking are like chemo, toxic >> sommewhere on the same level as alcohol to the liver. >> Even a Mcs breakfast can be nearly equal to a few beers or >> a few belts of booze in the toxic department, but we must always >> weigh the risks with the benefits. The liver is indeed an amazing >> gland/organ and it's ability to regenerate and heal is amazing. >> >> With Cirrhosis, to my understanding there is really no way to >> tell how far advanced it is, and this is not much use clinically anyway. >> Far more important is how it affects all the organ systems and if it is >> either well compensated, or decompensated. >> Portal hypertension can occur with even a mild case of full blown >> cirrhosis, on the other hand >> even a severely damaged liver might hold its own, and the portal >> hypertension >> not cause too many problems . >> Think of it like this- you may have cirrhosis, but that itself is not as >> significant >> as this question " how severe is your portal hypertension? Many pediatric >> liver transplants >> are done each year by living donor because >> out of control portal hypertension affects bleeding varicies more than it >> causes >> ascites in some kids. Ascites and lab related decompensation >> Will usually cause a meteoric rise in MELD/PELD score, and lead to >> transplant. >> Do you have ascites? How >> about portal systemic encephalopathy? >> These things will affect far more when you get a liver transplant than >> just the condition of your liver >> in most cases. But this is not true for cases of fulminant hepatic >> failure. Livers can fail dramatically and suddenly >> but hopefully this would put you or me at the very top of the list in our >> perspective regions. >> Stages and grades are good for pathologists and hepatologists, but are not >> much use to a cirrhosis patient. >> Far far more important is whether you have compensated or decompensate >> liver disease. >> Remember, decompensation is when ascites, edema, bleeding varicies, >> hepatorenal syndrome,severe hepatopulmonary syndrome, significant >> encephalopathy or >> liver failure occur. >> I hope this rambling helped. I am not a doctor, and this is all mostly my >> own opinion, although much of it is gleaned >> from papers by the well known in the hepatology world. Love, Bobby >> >> >> >> long life, old age, everything good-Apache prayer >> >> >> >> >> ____________ _________ _________ __ >> From: Gloria <gadamscanyahoo (DOT) ca> >> To: livercirrhosissuppo rtyahoogroups (DOT) com >> Sent: Monday, August 17, 2009 10:52:50 PM >> Subject: Different Liver Cirrhosis Stages >> >> >> Probably because I am just coming out of the after effect of a dose on >> interferon, some of the questions or comments lots of you have made have >> started to suddenly rattle around in what's left of my brain. >> >> In late January 2009, I was indeed diagnosed with cirrhosis which I >> believe must be in early stages as my enzymes had just showed the changes. >> Thus, I was accepted to this latest clinical trial. I do know that away >> back then, it was suggested to me that they don't like to do transplants >> unless one can clear the virus and that I would be going to an MRI near the >> end. >> >> Ok, my questions, is it possible that these doctors are perhaps prepping >> me for a liver transplant if the TX works?? Does anyone know how >> progressive your cirrhosis has to be and does cirrhosis ever turn back??? >> >> Gloria >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 hey gloria well my husband had a meld score 31 and he was on the list 3 days and got a liver. well the hep c has already attack this liver and hes in worse shape than he was with his other one. hes so yellow and the doctors said today that in 30 days this liver will be done if the interferon doesn't work so lucky me i have alot to look forward to. also hes been sick 2 years and now we will have to go through all this again iam so stress. Subject: Re: Different Liver Cirrhosis Stages To: livercirrhosissupport Date: Tuesday, August 18, 2009, 3:29 PM Well compensated liver disease can still include a number of symptoms. I have hepatic encephalopathy, but it is not deemed to be severe enough to be put on the transplant list. The AASLD, or American Association for the study of liver diseases is the board that many transplant programs base thier programs on, or at least the criteria. It is sad that even some people in this group have a loved one who sees a doctor who does not recognize the signs of decompensated liver disease. My own PCP did not know the difference between the two, and since I did not have any signs of decompensated liver disease, deemed me to be liver disease free. The guidlines can be found in our group files section here- http://health. groups.yahoo. com/group/ livercirrhosissu pport/files/ pdf here- http://f1.grp. yahoofs.com/ v1/MPqKSiP- WloWRa2v4FCCFHpm g13gbG5kgDnZnm3q 8G6P8PbHdlautPQM 8xu1jZH8TxY- iUddoaqi8Ctr4uSn /evalu_patient_ livertransplanta tion.pdf and here is a direct quote. Recommendations 1. Patients with cirrhosis should be referred for transplantation when they develop evidence of hepatic dysfunction (CTP > 7 and MELD > 10) or when they experience their first major complication (ascites, variceal bleeding, or hepatic encephalopathy) (II-3). 2. Children with chronic liver disease should be referred when they deviate from normal growth curves or develop evidence of hepatic dysfunction or portal hypertension (II-3). 3. Patients with type I hepatorenal syndrome should have an expedited referral for liver transplantation (II-3). all of these are considered decompensated. CTP stands for Child Turcotte Pugh scoring system. Love, Bobby ____________ _________ _________ __ From: Phyllis Delgado <pdelgado354@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Tuesday, August 18, 2009 9:51:02 AM Subject: Re: Different Liver Cirrhosis Stages what symptons are in compensated? ____________ _________ _________ __ From: Bob Aragon <robwalkingeagle@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Tuesday, August 18, 2009 4:56:44 AM Subject: Re: Different Liver Cirrhosis Stages Dear Gloria , I would like to try to take a stab at answering your question. In many cases with hepC, the liver docs have to take a chance with a transplant first-treatment second. The drugs you are taking are like chemo, toxic sommewhere on the same level as alcohol to the liver. Even a Mcs breakfast can be nearly equal to a few beers or a few belts of booze in the toxic department, but we must always weigh the risks with the benefits. The liver is indeed an amazing gland/organ and it's ability to regenerate and heal is amazing. With Cirrhosis, to my understanding there is really no way to tell how far advanced it is, and this is not much use clinically anyway. Far more important is how it affects all the organ systems and if it is either well compensated, or decompensated. Portal hypertension can occur with even a mild case of full blown cirrhosis, on the other hand even a severely damaged liver might hold its own, and the portal hypertension not cause too many problems . Think of it like this- you may have cirrhosis, but that itself is not as significant as this question " how severe is your portal hypertension? Many pediatric liver transplants are done each year by living donor because out of control portal hypertension affects bleeding varicies more than it causes ascites in some kids. Ascites and lab related decompensation Will usually cause a meteoric rise in MELD/PELD score, and lead to transplant. Do you have ascites? How about portal systemic encephalopathy? These things will affect far more when you get a liver transplant than just the condition of your liver in most cases. But this is not true for cases of fulminant hepatic failure. Livers can fail dramatically and suddenly but hopefully this would put you or me at the very top of the list in our perspective regions. Stages and grades are good for pathologists and hepatologists, but are not much use to a cirrhosis patient. Far far more important is whether you have compensated or decompensate liver disease. Remember, decompensation is when ascites, edema, bleeding varicies, hepatorenal syndrome,severe hepatopulmonary syndrome, significant encephalopathy or liver failure occur. I hope this rambling helped. I am not a doctor, and this is all mostly my own opinion, although much of it is gleaned from papers by the well known in the hepatology world. Love, Bobby long life, old age, everything good-Apache prayer ____________ _________ _________ __ From: Gloria <gadamscanyahoo (DOT) ca> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Monday, August 17, 2009 10:52:50 PM Subject: Different Liver Cirrhosis Stages Probably because I am just coming out of the after effect of a dose on interferon, some of the questions or comments lots of you have made have started to suddenly rattle around in what's left of my brain. In late January 2009, I was indeed diagnosed with cirrhosis which I believe must be in early stages as my enzymes had just showed the changes. Thus, I was accepted to this latest clinical trial. I do know that away back then, it was suggested to me that they don't like to do transplants unless one can clear the virus and that I would be going to an MRI near the end. Ok, my questions, is it possible that these doctors are perhaps prepping me for a liver transplant if the TX works?? Does anyone know how progressive your cirrhosis has to be and does cirrhosis ever turn back??? Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 , I am so sorry to hear about your husband's condition. I know that both of you have been through so very much. My prayers are with you both as the days move forward, praying that the new liver will overcome this setback. Warm Hugs........... Diane http://auntdisexperimentallife.blogspot.com/ ________________________________ To: livercirrhosissupport Sent: Tuesday, August 18, 2009 7:13:55 PM Subject: Re: Different Liver Cirrhosis Stages hello ev1 i have not been on in awhile. my husband has a new liver and hes more yellow now with this one than the bad one he had. they said that the hep c has attack this liver already and that it will destroy it within 30 days so i think that he will need another transplant. i hope that he doesn't have to go through all this again. and whats saying there will another liver available right away. all bum out again. linda > >> Dear Gloria , I would like to try to take a >> stab at answering your question. In many >> cases with hepC, the liver docs have to take a chance >> with a transplant first-treatment second. >> The drugs you are taking are like chemo, toxic >> sommewhere on the same level as alcohol to the liver. >> Even a Mcs breakfast can be nearly equal to a few beers or >> a few belts of booze in the toxic department, but we must always >> weigh the risks with the benefits. The liver is indeed an amazing >> gland/organ and it's ability to regenerate and heal is amazing. >> >> With Cirrhosis, to my understanding there is really no way to >> tell how far advanced it is, and this is not much use clinically anyway. >> Far more important is how it affects all the organ systems and if it is >> either well compensated, or decompensated. >> Portal hypertension can occur with even a mild case of full blown >> cirrhosis, on the other hand >> even a severely damaged liver might hold its own, and the portal >> hypertension >> not cause too many problems . >> Think of it like this- you may have cirrhosis, but that itself is not as >> significant >> as this question " how severe is your portal hypertension? Many pediatric >> liver transplants >> are done each year by living donor because >> out of control portal hypertension affects bleeding varicies more than it >> causes >> ascites in some kids. Ascites and lab related decompensation >> Will usually cause a meteoric rise in MELD/PELD score, and lead to >> transplant. >> Do you have ascites? How >> about portal systemic encephalopathy? >> These things will affect far more when you get a liver transplant than >> just the condition of your liver >> in most cases. But this is not true for cases of fulminant hepatic >> failure. Livers can fail dramatically and suddenly >> but hopefully this would put you or me at the very top of the list in our >> perspective regions. >> Stages and grades are good for pathologists and hepatologists, but are not >> much use to a cirrhosis patient. >> Far far more important is whether you have compensated or decompensate >> liver disease. >> Remember, decompensation is when ascites, edema, bleeding varicies, >> hepatorenal syndrome,severe hepatopulmonary syndrome, significant >> encephalopathy or >> liver failure occur. >> I hope this rambling helped. I am not a doctor, and this is all mostly my >> own opinion, although much of it is gleaned >> from papers by the well known in the hepatology world. Love, Bobby >> >> >> >> long life, old age, everything good-Apache prayer >> >> >> >> >> ____________ _________ _________ __ >> From: Gloria <gadamscanyahoo (DOT) ca> >> To: livercirrhosissuppo rtyahoogroups (DOT) com >> Sent: Monday, August 17, 2009 10:52:50 PM >> Subject: Different Liver Cirrhosis Stages >> >> >> Probably because I am just coming out of the after effect of a dose on >> interferon, some of the questions or comments lots of you have made have >> started to suddenly rattle around in what's left of my brain. >> >> In late January 2009, I was indeed diagnosed with cirrhosis which I >> believe must be in early stages as my enzymes had just showed the changes. >> Thus, I was accepted to this latest clinical trial. I do know that away >> back then, it was suggested to me that they don't like to do transplants >> unless one can clear the virus and that I would be going to an MRI near the >> end. >> >> Ok, my questions, is it possible that these doctors are perhaps prepping >> me for a liver transplant if the TX works?? Does anyone know how >> progressive your cirrhosis has to be and does cirrhosis ever turn back??? >> >> Gloria >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 : I am so sorry to hear about your husband!!! How long has he had his new liver ?? I'm definitely not in the least yellow so I guess I have a whole long ways to go. To everyone - I might have asked this before and I apologize for the brain fog in advance if I did - what is a MELD or PELD score?? Gloria ________________________________ hey gloria well my husband had a meld score 31 and he was on the list 3 days and got a liver. well the hep c has already attack this liver and hes in worse shape than he was with his other one. hes so yellow and the doctors said today that in 30 days this liver will be done if the interferon doesn't work so lucky me i have alot to look forward to. also hes been sick 2 years and now we will have to go through all this again iam so stress. From: Bob Aragon <robwalkingeagle@ yahoo.com> Subject: Re: Different Liver Cirrhosis Stages To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Tuesday, August 18, 2009, 3:29 PM Well compensated liver disease can still include a number of symptoms. I have hepatic encephalopathy, but it is not deemed to be severe enough to be put on the transplant list. The AASLD, or American Association for the study of liver diseases is the board that many transplant programs base thier programs on, or at least the criteria. It is sad that even some people in this group have a loved one who sees a doctor who does not recognize the signs of decompensated liver disease. My own PCP did not know the difference between the two, and since I did not have any signs of decompensated liver disease, deemed me to be liver disease free. The guidlines can be found in our group files section here- http://health. groups.yahoo. com/group/ livercirrhosissu pport/files/ pdf here- http://f1.grp. yahoofs.com/ v1/MPqKSiP- WloWRa2v4FCCFHpm g13gbG5kgDnZnm3q 8G6P8PbHdlautPQM 8xu1jZH8TxY- iUddoaqi8Ctr4uSn /evalu_patient_ livertransplanta tion.pdf and here is a direct quote. Recommendations 1. Patients with cirrhosis should be referred for transplantation when they develop evidence of hepatic dysfunction (CTP > 7 and MELD > 10) or when they experience their first major complication (ascites, variceal bleeding, or hepatic encephalopathy) (II-3). 2. Children with chronic liver disease should be referred when they deviate from normal growth curves or develop evidence of hepatic dysfunction or portal hypertension (II-3). 3. Patients with type I hepatorenal syndrome should have an expedited referral for liver transplantation (II-3). all of these are considered decompensated. CTP stands for Child Turcotte Pugh scoring system. Love, Bobby ____________ _________ _________ __ From: Phyllis Delgado <pdelgado354@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Tuesday, August 18, 2009 9:51:02 AM Subject: Re: Different Liver Cirrhosis Stages what symptons are in compensated? ____________ _________ _________ __ From: Bob Aragon <robwalkingeagle@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Tuesday, August 18, 2009 4:56:44 AM Subject: Re: Different Liver Cirrhosis Stages Dear Gloria , I would like to try to take a stab at answering your question. In many cases with hepC, the liver docs have to take a chance with a transplant first-treatment second. The drugs you are taking are like chemo, toxic sommewhere on the same level as alcohol to the liver. Even a Mcs breakfast can be nearly equal to a few beers or a few belts of booze in the toxic department, but we must always weigh the risks with the benefits. The liver is indeed an amazing gland/organ and it's ability to regenerate and heal is amazing. With Cirrhosis, to my understanding there is really no way to tell how far advanced it is, and this is not much use clinically anyway. Far more important is how it affects all the organ systems and if it is either well compensated, or decompensated. Portal hypertension can occur with even a mild case of full blown cirrhosis, on the other hand even a severely damaged liver might hold its own, and the portal hypertension not cause too many problems . Think of it like this- you may have cirrhosis, but that itself is not as significant as this question " how severe is your portal hypertension? Many pediatric liver transplants are done each year by living donor because out of control portal hypertension affects bleeding varicies more than it causes ascites in some kids. Ascites and lab related decompensation Will usually cause a meteoric rise in MELD/PELD score, and lead to transplant. Do you have ascites? How about portal systemic encephalopathy? These things will affect far more when you get a liver transplant than just the condition of your liver in most cases. But this is not true for cases of fulminant hepatic failure. Livers can fail dramatically and suddenly but hopefully this would put you or me at the very top of the list in our perspective regions. Stages and grades are good for pathologists and hepatologists, but are not much use to a cirrhosis patient. Far far more important is whether you have compensated or decompensate liver disease. Remember, decompensation is when ascites, edema, bleeding varicies, hepatorenal syndrome,severe hepatopulmonary syndrome, significant encephalopathy or liver failure occur. I hope this rambling helped. I am not a doctor, and this is all mostly my own opinion, although much of it is gleaned from papers by the well known in the hepatology world. Love, Bobby long life, old age, everything good-Apache prayer ____________ _________ _________ __ From: Gloria <gadamscanyahoo (DOT) ca> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Monday, August 17, 2009 10:52:50 PM Subject: Different Liver Cirrhosis Stages Probably because I am just coming out of the after effect of a dose on interferon, some of the questions or comments lots of you have made have started to suddenly rattle around in what's left of my brain. In late January 2009, I was indeed diagnosed with cirrhosis which I believe must be in early stages as my enzymes had just showed the changes. Thus, I was accepted to this latest clinical trial. I do know that away back then, it was suggested to me that they don't like to do transplants unless one can clear the virus and that I would be going to an MRI near the end. Ok, my questions, is it possible that these doctors are perhaps prepping me for a liver transplant if the TX works?? Does anyone know how progressive your cirrhosis has to be and does cirrhosis ever turn back??? Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Gloria MELD = Model for End Stage Liver Disease PELD = Pediatric for End Stage Liver Disease Thanks be to God for he creates our tomorrows Love, Lyncia From: Bob Aragon <robwalkingeagle@ yahoo.com> Subject: Re: Different Liver Cirrhosis Stages To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Tuesday, August 18, 2009, 3:29 PM Well compensated liver disease can still include a number of symptoms. I have hepatic encephalopathy, but it is not deemed to be severe enough to be put on the transplant list. The AASLD, or American Association for the study of liver diseases is the board that many transplant programs base thier programs on, or at least the criteria. It is sad that even some people in this group have a loved one who sees a doctor who does not recognize the signs of decompensated liver disease. My own PCP did not know the difference between the two, and since I did not have any signs of decompensated liver disease, deemed me to be liver disease free. The guidlines can be found in our group files section here- http://health. groups.yahoo. com/group/ livercirrhosissu pport/files/ pdf here- http://f1.grp. yahoofs.com/ v1/MPqKSiP- WloWRa2v4FCCFHpm g13gbG5kgDnZnm3q 8G6P8PbHdlautPQM 8xu1jZH8TxY- iUddoaqi8Ctr4uSn /evalu_patient_ livertransplanta tion.pdf and here is a direct quote. Recommendations 1. Patients with cirrhosis should be referred for transplantation when they develop evidence of hepatic dysfunction (CTP > 7 and MELD > 10) or when they experience their first major complication (ascites, variceal bleeding, or hepatic encephalopathy) (II-3). 2. Children with chronic liver disease should be referred when they deviate from normal growth curves or develop evidence of hepatic dysfunction or portal hypertension (II-3). 3. Patients with type I hepatorenal syndrome should have an expedited referral for liver transplantation (II-3). all of these are considered decompensated. CTP stands for Child Turcotte Pugh scoring system. Love, Bobby ____________ _________ _________ __ From: Phyllis Delgado <pdelgado354@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Tuesday, August 18, 2009 9:51:02 AM Subject: Re: Different Liver Cirrhosis Stages what symptons are in compensated? ____________ _________ _________ __ From: Bob Aragon <robwalkingeagle@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Tuesday, August 18, 2009 4:56:44 AM Subject: Re: Different Liver Cirrhosis Stages Dear Gloria , I would like to try to take a stab at answering your question. In many cases with hepC, the liver docs have to take a chance with a transplant first-treatment second. The drugs you are taking are like chemo, toxic sommewhere on the same level as alcohol to the liver. Even a Mcs breakfast can be nearly equal to a few beers or a few belts of booze in the toxic department, but we must always weigh the risks with the benefits. The liver is indeed an amazing gland/organ and it's ability to regenerate and heal is amazing. With Cirrhosis, to my understanding there is really no way to tell how far advanced it is, and this is not much use clinically anyway. Far more important is how it affects all the organ systems and if it is either well compensated, or decompensated. Portal hypertension can occur with even a mild case of full blown cirrhosis, on the other hand even a severely damaged liver might hold its own, and the portal hypertension not cause too many problems . Think of it like this- you may have cirrhosis, but that itself is not as significant as this question " how severe is your portal hypertension? Many pediatric liver transplants are done each year by living donor because out of control portal hypertension affects bleeding varicies more than it causes ascites in some kids. Ascites and lab related decompensation Will usually cause a meteoric rise in MELD/PELD score, and lead to transplant. Do you have ascites? How about portal systemic encephalopathy? These things will affect far more when you get a liver transplant than just the condition of your liver in most cases. But this is not true for cases of fulminant hepatic failure. Livers can fail dramatically and suddenly but hopefully this would put you or me at the very top of the list in our perspective regions. Stages and grades are good for pathologists and hepatologists, but are not much use to a cirrhosis patient. Far far more important is whether you have compensated or decompensate liver disease. Remember, decompensation is when ascites, edema, bleeding varicies, hepatorenal syndrome,severe hepatopulmonary syndrome, significant encephalopathy or liver failure occur. I hope this rambling helped. I am not a doctor, and this is all mostly my own opinion, although much of it is gleaned from papers by the well known in the hepatology world. Love, Bobby long life, old age, everything good-Apache prayer ____________ _________ _________ __ From: Gloria <gadamscanyahoo (DOT) ca> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Monday, August 17, 2009 10:52:50 PM Subject: Different Liver Cirrhosis Stages Probably because I am just coming out of the after effect of a dose on interferon, some of the questions or comments lots of you have made have started to suddenly rattle around in what's left of my brain. In late January 2009, I was indeed diagnosed with cirrhosis which I believe must be in early stages as my enzymes had just showed the changes. Thus, I was accepted to this latest clinical trial. I do know that away back then, it was suggested to me that they don't like to do transplants unless one can clear the virus and that I would be going to an MRI near the end. Ok, my questions, is it possible that these doctors are perhaps prepping me for a liver transplant if the TX works?? Does anyone know how progressive your cirrhosis has to be and does cirrhosis ever turn back??? Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 I am so sorry. I hate to hear this. Are they treating him for rejection? They told me that it is hard to tell the difference between rejection or the Hep C attacking the liver, so they gave me more anti rejection drugs when I had a little episode. I know my Hep C was back as soon as the new liver was put in, but it didn't attack that fast. I hope things get better, and if he needs another transplant, I hope a match is found quickly. I will be praying for you and him. Penny > > > >> Dear Gloria , I would like to try to take a > >> stab at answering your question. In many > >> cases with hepC, the liver docs have to take a chance > >> with a transplant first-treatment second. > >> The drugs you are taking are like chemo, toxic > >> sommewhere on the same level as alcohol to the liver. > >> Even a Mcs breakfast can be nearly equal to a few beers or > >> a few belts of booze in the toxic department, but we must always > >> weigh the risks with the benefits. The liver is indeed an amazing > >> gland/organ and it's ability to regenerate and heal is amazing. > >> > >> With Cirrhosis, to my understanding there is really no way to > >> tell how far advanced it is, and this is not much use clinically anyway. > >> Far more important is how it affects all the organ systems and if it is > >> either well compensated, or decompensated. > >> Portal hypertension can occur with even a mild case of full blown > >> cirrhosis, on the other hand > >> even a severely damaged liver might hold its own, and the portal > >> hypertension > >> not cause too many problems . > >> Think of it like this- you may have cirrhosis, but that itself is not as > >> significant > >> as this question " how severe is your portal hypertension? Many pediatric > >> liver transplants > >> are done each year by living donor because > >> out of control portal hypertension affects bleeding varicies more than it > >> causes > >> ascites in some kids. Ascites and lab related decompensation > >> Will usually cause a meteoric rise in MELD/PELD score, and lead to > >> transplant. > >> Do you have ascites? How > >> about portal systemic encephalopathy? > >> These things will affect far more when you get a liver transplant than > >> just the condition of your liver > >> in most cases. But this is not true for cases of fulminant hepatic > >> failure. Livers can fail dramatically and suddenly > >> but hopefully this would put you or me at the very top of the list in our > >> perspective regions. > >> Stages and grades are good for pathologists and hepatologists, but are not > >> much use to a cirrhosis patient. > >> Far far more important is whether you have compensated or decompensate > >> liver disease. > >> Remember, decompensation is when ascites, edema, bleeding varicies, > >> hepatorenal syndrome,severe hepatopulmonary syndrome, significant > >> encephalopathy or > >> liver failure occur. > >> I hope this rambling helped. I am not a doctor, and this is all mostly my > >> own opinion, although much of it is gleaned > >> from papers by the well known in the hepatology world. Love, Bobby > >> > >> > >> > >> long life, old age, everything good-Apache prayer > >> > >> > >> > >> > >> ____________ _________ _________ __ > >> From: Gloria <gadamscanyahoo (DOT) ca> > >> To: livercirrhosissuppo rtyahoogroups (DOT) com > >> Sent: Monday, August 17, 2009 10:52:50 PM > >> Subject: Different Liver Cirrhosis Stages > >> > >> > >> Probably because I am just coming out of the after effect of a dose on > >> interferon, some of the questions or comments lots of you have made have > >> started to suddenly rattle around in what's left of my brain. > >> > >> In late January 2009, I was indeed diagnosed with cirrhosis which I > >> believe must be in early stages as my enzymes had just showed the changes. > >> Thus, I was accepted to this latest clinical trial. I do know that away > >> back then, it was suggested to me that they don't like to do transplants > >> unless one can clear the virus and that I would be going to an MRI near the > >> end. > >> > >> Ok, my questions, is it possible that these doctors are perhaps prepping > >> me for a liver transplant if the TX works?? Does anyone know how > >> progressive your cirrhosis has to be and does cirrhosis ever turn back??? > >> > >> Gloria > >> > >> > >> > >> > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 I sure hope the treatment helps and stops the damage. Penny > > > > Subject: Re: Different Liver Cirrhosis Stages > To: livercirrhosissupport > Date: Tuesday, August 18, 2009, 3:29 PM > > > > > > > Well compensated liver disease can still include a number of symptoms. I have hepatic encephalopathy, but it is not deemed to be severe enough to be put on the transplant list. > > The AASLD, or American Association for the study of liver diseases is the board that many transplant programs base thier programs on, or at least the criteria. It is sad that even some people in this group have a loved one who sees a doctor who does not recognize the signs of decompensated liver disease. My own PCP did not know the difference between the two, and since I did not have any signs of decompensated liver disease, deemed me to be liver disease free. The guidlines can be found in our group files section here- > http://health. groups.yahoo. com/group/ livercirrhosissu pport/files/ > > pdf here- > http://f1.grp. yahoofs.com/ v1/MPqKSiP- WloWRa2v4FCCFHpm g13gbG5kgDnZnm3q 8G6P8PbHdlautPQM 8xu1jZH8TxY- iUddoaqi8Ctr4uSn /evalu_patient_ livertransplanta tion.pdf > > and here is a direct quote. > Recommendations > 1. Patients with cirrhosis should be referred for > transplantation when they develop evidence of hepatic > dysfunction (CTP > 7 and MELD > 10) or when they > experience their first major complication (ascites, > variceal bleeding, or hepatic encephalopathy) (II-3). > 2. Children with chronic liver disease should be > referred when they deviate from normal growth curves > or develop evidence of hepatic dysfunction or portal > hypertension (II-3). > 3. Patients with type I hepatorenal syndrome > should have an expedited referral for liver transplantation > (II-3). > > all of these are considered decompensated. CTP stands for Child Turcotte Pugh scoring system. > Love, Bobby > > ____________ _________ _________ __ > From: Phyllis Delgado <pdelgado354@ yahoo.com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Tuesday, August 18, 2009 9:51:02 AM > Subject: Re: Different Liver Cirrhosis Stages > > what symptons are in compensated? > > ____________ _________ _________ __ > From: Bob Aragon <robwalkingeagle@ yahoo.com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Tuesday, August 18, 2009 4:56:44 AM > Subject: Re: Different Liver Cirrhosis Stages > > Dear Gloria , I would like to try to take a > stab at answering your question. In many > cases with hepC, the liver docs have to take a chance > with a transplant first-treatment second. > The drugs you are taking are like chemo, toxic > sommewhere on the same level as alcohol to the liver. > Even a Mcs breakfast can be nearly equal to a few beers or > a few belts of booze in the toxic department, but we must always > weigh the risks with the benefits. The liver is indeed an amazing > gland/organ and it's ability to regenerate and heal is amazing. > > With Cirrhosis, to my understanding there is really no way to > tell how far advanced it is, and this is not much use clinically anyway. > Far more important is how it affects all the organ systems and if it is either well compensated, or decompensated. > Portal hypertension can occur with even a mild case of full blown cirrhosis, on the other hand > even a severely damaged liver might hold its own, and the portal hypertension > not cause too many problems . > Think of it like this- you may have cirrhosis, but that itself is not as significant > as this question " how severe is your portal hypertension? Many pediatric liver transplants > are done each year by living donor because > out of control portal hypertension affects bleeding varicies more than it causes > ascites in some kids. Ascites and lab related decompensation > Will usually cause a meteoric rise in MELD/PELD score, and lead to transplant. > Do you have ascites? How > about portal systemic encephalopathy? > These things will affect far more when you get a liver transplant than just the condition of your liver > in most cases. But this is not true for cases of fulminant hepatic failure. Livers can fail dramatically and suddenly > but hopefully this would put you or me at the very top of the list in our perspective regions. > Stages and grades are good for pathologists and hepatologists, but are not much use to a cirrhosis patient. > Far far more important is whether you have compensated or decompensate liver disease. > Remember, decompensation is when ascites, edema, bleeding varicies, hepatorenal syndrome,severe hepatopulmonary syndrome, significant encephalopathy or > liver failure occur. > I hope this rambling helped. I am not a doctor, and this is all mostly my own opinion, although much of it is gleaned > from papers by the well known in the hepatology world. Love, Bobby > > long life, old age, everything good-Apache prayer > > ____________ _________ _________ __ > From: Gloria <gadamscanyahoo (DOT) ca> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Monday, August 17, 2009 10:52:50 PM > Subject: Different Liver Cirrhosis Stages > > Probably because I am just coming out of the after effect of a dose on interferon, some of the questions or comments lots of you have made have started to suddenly rattle around in what's left of my brain. > > In late January 2009, I was indeed diagnosed with cirrhosis which I believe must be in early stages as my enzymes had just showed the changes. Thus, I was accepted to this latest clinical trial. I do know that away back then, it was suggested to me that they don't like to do transplants unless one can clear the virus and that I would be going to an MRI near the end. > > Ok, my questions, is it possible that these doctors are perhaps prepping me for a liver transplant if the TX works?? Does anyone know how progressive your cirrhosis has to be and does cirrhosis ever turn back??? > > Gloria > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Thank you Lyncia ________________________________ Gloria MELD = Model for End Stage Liver Disease PELD = Pediatric for End Stage Liver Disease Thanks be to God for he creates our tomorrows Love, Lyncia From: Bob Aragon <robwalkingeagle@ yahoo.com> Subject: Re: Different Liver Cirrhosis Stages To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Tuesday, August 18, 2009, 3:29 PM Well compensated liver disease can still include a number of symptoms. I have hepatic encephalopathy, but it is not deemed to be severe enough to be put on the transplant list. The AASLD, or American Association for the study of liver diseases is the board that many transplant programs base thier programs on, or at least the criteria. It is sad that even some people in this group have a loved one who sees a doctor who does not recognize the signs of decompensated liver disease. My own PCP did not know the difference between the two, and since I did not have any signs of decompensated liver disease, deemed me to be liver disease free. The guidlines can be found in our group files section here- http://health. groups.yahoo. com/group/ livercirrhosissu pport/files/ pdf here- http://f1.grp. yahoofs.com/ v1/MPqKSiP- WloWRa2v4FCCFHpm g13gbG5kgDnZnm3q 8G6P8PbHdlautPQM 8xu1jZH8TxY- iUddoaqi8Ctr4uSn /evalu_patient_ livertransplanta tion.pdf and here is a direct quote. Recommendations 1. Patients with cirrhosis should be referred for transplantation when they develop evidence of hepatic dysfunction (CTP > 7 and MELD > 10) or when they experience their first major complication (ascites, variceal bleeding, or hepatic encephalopathy) (II-3). 2. Children with chronic liver disease should be referred when they deviate from normal growth curves or develop evidence of hepatic dysfunction or portal hypertension (II-3). 3. Patients with type I hepatorenal syndrome should have an expedited referral for liver transplantation (II-3). all of these are considered decompensated. CTP stands for Child Turcotte Pugh scoring system. Love, Bobby ____________ _________ _________ __ From: Phyllis Delgado <pdelgado354@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Tuesday, August 18, 2009 9:51:02 AM Subject: Re: Different Liver Cirrhosis Stages what symptons are in compensated? ____________ _________ _________ __ From: Bob Aragon <robwalkingeagle@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Tuesday, August 18, 2009 4:56:44 AM Subject: Re: Different Liver Cirrhosis Stages Dear Gloria , I would like to try to take a stab at answering your question. In many cases with hepC, the liver docs have to take a chance with a transplant first-treatment second. The drugs you are taking are like chemo, toxic sommewhere on the same level as alcohol to the liver. Even a Mcs breakfast can be nearly equal to a few beers or a few belts of booze in the toxic department, but we must always weigh the risks with the benefits. The liver is indeed an amazing gland/organ and it's ability to regenerate and heal is amazing. With Cirrhosis, to my understanding there is really no way to tell how far advanced it is, and this is not much use clinically anyway. Far more important is how it affects all the organ systems and if it is either well compensated, or decompensated. Portal hypertension can occur with even a mild case of full blown cirrhosis, on the other hand even a severely damaged liver might hold its own, and the portal hypertension not cause too many problems . Think of it like this- you may have cirrhosis, but that itself is not as significant as this question " how severe is your portal hypertension? Many pediatric liver transplants are done each year by living donor because out of control portal hypertension affects bleeding varicies more than it causes ascites in some kids. Ascites and lab related decompensation Will usually cause a meteoric rise in MELD/PELD score, and lead to transplant. Do you have ascites? How about portal systemic encephalopathy? These things will affect far more when you get a liver transplant than just the condition of your liver in most cases. But this is not true for cases of fulminant hepatic failure. Livers can fail dramatically and suddenly but hopefully this would put you or me at the very top of the list in our perspective regions. Stages and grades are good for pathologists and hepatologists, but are not much use to a cirrhosis patient. Far far more important is whether you have compensated or decompensate liver disease. Remember, decompensation is when ascites, edema, bleeding varicies, hepatorenal syndrome,severe hepatopulmonary syndrome, significant encephalopathy or liver failure occur. I hope this rambling helped. I am not a doctor, and this is all mostly my own opinion, although much of it is gleaned from papers by the well known in the hepatology world. Love, Bobby long life, old age, everything good-Apache prayer ____________ _________ _________ __ From: Gloria <gadamscanyahoo (DOT) ca> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Monday, August 17, 2009 10:52:50 PM Subject: Different Liver Cirrhosis Stages Probably because I am just coming out of the after effect of a dose on interferon, some of the questions or comments lots of you have made have started to suddenly rattle around in what's left of my brain. In late January 2009, I was indeed diagnosed with cirrhosis which I believe must be in early stages as my enzymes had just showed the changes. Thus, I was accepted to this latest clinical trial. I do know that away back then, it was suggested to me that they don't like to do transplants unless one can clear the virus and that I would be going to an MRI near the end. Ok, my questions, is it possible that these doctors are perhaps prepping me for a liver transplant if the TX works?? Does anyone know how progressive your cirrhosis has to be and does cirrhosis ever turn back??? Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 I think I understand. Just hang in there as long as you can. A lot of folks adore you. Love, bobby long life, old age, everything good-Apache prayer ________________________________ To: livercirrhosissupport Sent: Tuesday, August 18, 2009 2:06:58 PM Subject: Re: Different Liver Cirrhosis Stages A couple of years after being diagnosed, I went to the Mayo Clinic in Phoenix to get some clarification because I was getting different information from the gastro who did the diagnosis with a biopsy, and a transplant center. The people at the transplant center were very rude, abrupt, insulting almost. That is why I wanted to go to Mayo since I am from Minnesota originally and Mayo is next to God there. I felt I could trust them. Both the transplant center and Mayo told me that I would not qualify for a transplant in Arizona, Mayo said I possibly could in a couple of other states, specifically MN and Florida. They encouraged me to look for a donor kidney , but I couldn't do that. Decided that at my age and state of general health it wasn't worth fighting for right now. I have had 17 angioplasties/ angiograms with 9 stents placed. Carotid artery surgery, kidney function is at 30% and I have a number of other medical conditions. Currently, I am being seen by specialists for some conditions which might be caused by the cirrhosis, such as the kidney disease. It is the feeling of the kidney doctor that it is caused by lack of liver function. I was just told when I had my last angioplasty that if my kidneys deteriorate much more, they won't do angioplasties on me either. I have appt with both my cardio and the kidney doctors coming up soon, so will be talking to them. My blood work doesn't show much related to liver problems, except for the increasing creatinine levels. I asked the question because you had mentioned hepatorenal syndrome. I am sure with all the above, I must have answered your question, and much more. lol. If not, feel free to ask more questions. Jan H On Tue, Aug 18, 2009 at 12:32 PM, Bob Aragon <robwalkingeagle@ yahoo.com>wrote: > Jan, your kidney function loss may well be considered hepatorenal syndrome. > You have described a lot abour your situation, but have you been seen at a > transplant hospital even though you are sure you will not get a transplant? > Am I just confused? Love, Bobby > > long life, old age, everything good-Apache prayer > > > > > ____________ _________ _________ __ > From: Jan Holman <janholmangmail (DOT) com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Tuesday, August 18, 2009 10:37:52 AM > Subject: Re: Different Liver Cirrhosis Stages > > > Bobby - since my kidney function is going down, about 30% at present, that > would mean then that I would be considered decompensated since other organs > are getting involved? Jan H > > On Tue, Aug 18, 2009 at 5:56 AM, Bob Aragon <robwalkingeagle@ yahoo.com > >wrote: > > > Dear Gloria , I would like to try to take a > > stab at answering your question. In many > > cases with hepC, the liver docs have to take a chance > > with a transplant first-treatment second. > > The drugs you are taking are like chemo, toxic > > sommewhere on the same level as alcohol to the liver. > > Even a Mcs breakfast can be nearly equal to a few beers or > > a few belts of booze in the toxic department, but we must always > > weigh the risks with the benefits. The liver is indeed an amazing > > gland/organ and it's ability to regenerate and heal is amazing. > > > > With Cirrhosis, to my understanding there is really no way to > > tell how far advanced it is, and this is not much use clinically anyway. > > Far more important is how it affects all the organ systems and if it is > > either well compensated, or decompensated. > > Portal hypertension can occur with even a mild case of full blown > > cirrhosis, on the other hand > > even a severely damaged liver might hold its own, and the portal > > hypertension > > not cause too many problems . > > Think of it like this- you may have cirrhosis, but that itself is not as > > significant > > as this question " how severe is your portal hypertension? Many pediatric > > liver transplants > > are done each year by living donor because > > out of control portal hypertension affects bleeding varicies more than it > > causes > > ascites in some kids. Ascites and lab related decompensation > > Will usually cause a meteoric rise in MELD/PELD score, and lead to > > transplant. > > Do you have ascites? How > > about portal systemic encephalopathy? > > These things will affect far more when you get a liver transplant than > just > > the condition of your liver > > in most cases. But this is not true for cases of fulminant hepatic > failure. > > Livers can fail dramatically and suddenly > > but hopefully this would put you or me at the very top of the list in our > > perspective regions. > > Stages and grades are good for pathologists and hepatologists, but are > not > > much use to a cirrhosis patient. > > Far far more important is whether you have compensated or decompensate > > liver disease. > > Remember, decompensation is when ascites, edema, bleeding varicies, > > hepatorenal syndrome,severe hepatopulmonary syndrome, significant > > encephalopathy or > > liver failure occur. > > I hope this rambling helped. I am not a doctor, and this is all mostly my > > own opinion, although much of it is gleaned > > from papers by the well known in the hepatology world. Love, Bobby > > > > > > > > long life, old age, everything good-Apache prayer > > > > > > > > > > ____________ _________ _________ __ > > From: Gloria <gadamscanyahoo (DOT) ca> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Monday, August 17, 2009 10:52:50 PM > > Subject: Different Liver Cirrhosis Stages > > > > > > Probably because I am just coming out of the after effect of a dose on > > interferon, some of the questions or comments lots of you have made have > > started to suddenly rattle around in what's left of my brain. > > > > In late January 2009, I was indeed diagnosed with cirrhosis which I > believe > > must be in early stages as my enzymes had just showed the changes. Thus, > I > > was accepted to this latest clinical trial. I do know that away back > then, > > it was suggested to me that they don't like to do transplants unless one > can > > clear the virus and that I would be going to an MRI near the end. > > > > Ok, my questions, is it possible that these doctors are perhaps prepping > me > > for a liver transplant if the TX works?? Does anyone know how > progressive > > your cirrhosis has to be and does cirrhosis ever turn back??? > > > > Gloria > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 , you and your husband are in our prayers. Please do not give up hope. Love, Bobby long life, old age, everything good-Apache prayer ________________________________ To: livercirrhosissupport Sent: Tuesday, August 18, 2009 6:20:42 PM Subject: Re: Different Liver Cirrhosis Stages hey gloria well my husband had a meld score 31 and he was on the list 3 days and got a liver. well the hep c has already attack this liver and hes in worse shape than he was with his other one. hes so yellow and the doctors said today that in 30 days this liver will be done if the interferon doesn't work so lucky me i have alot to look forward to. also hes been sick 2 years and now we will have to go through all this again iam so stress. From: Bob Aragon <robwalkingeagle@ yahoo.com> Subject: Re: Different Liver Cirrhosis Stages To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Tuesday, August 18, 2009, 3:29 PM Well compensated liver disease can still include a number of symptoms. I have hepatic encephalopathy, but it is not deemed to be severe enough to be put on the transplant list. The AASLD, or American Association for the study of liver diseases is the board that many transplant programs base thier programs on, or at least the criteria. It is sad that even some people in this group have a loved one who sees a doctor who does not recognize the signs of decompensated liver disease. My own PCP did not know the difference between the two, and since I did not have any signs of decompensated liver disease, deemed me to be liver disease free. The guidlines can be found in our group files section here- http://health. groups.yahoo. com/group/ livercirrhosissu pport/files/ pdf here- http://f1.grp. yahoofs.com/ v1/MPqKSiP- WloWRa2v4FCCFHpm g13gbG5kgDnZnm3q 8G6P8PbHdlautPQM 8xu1jZH8TxY- iUddoaqi8Ctr4uSn /evalu_patient_ livertransplanta tion.pdf and here is a direct quote. Recommendations 1. Patients with cirrhosis should be referred for transplantation when they develop evidence of hepatic dysfunction (CTP > 7 and MELD > 10) or when they experience their first major complication (ascites, variceal bleeding, or hepatic encephalopathy) (II-3). 2. Children with chronic liver disease should be referred when they deviate from normal growth curves or develop evidence of hepatic dysfunction or portal hypertension (II-3). 3. Patients with type I hepatorenal syndrome should have an expedited referral for liver transplantation (II-3). all of these are considered decompensated. CTP stands for Child Turcotte Pugh scoring system. Love, Bobby ____________ _________ _________ __ From: Phyllis Delgado <pdelgado354@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Tuesday, August 18, 2009 9:51:02 AM Subject: Re: Different Liver Cirrhosis Stages what symptons are in compensated? ____________ _________ _________ __ From: Bob Aragon <robwalkingeagle@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Tuesday, August 18, 2009 4:56:44 AM Subject: Re: Different Liver Cirrhosis Stages Dear Gloria , I would like to try to take a stab at answering your question. In many cases with hepC, the liver docs have to take a chance with a transplant first-treatment second. The drugs you are taking are like chemo, toxic sommewhere on the same level as alcohol to the liver. Even a Mcs breakfast can be nearly equal to a few beers or a few belts of booze in the toxic department, but we must always weigh the risks with the benefits. The liver is indeed an amazing gland/organ and it's ability to regenerate and heal is amazing. With Cirrhosis, to my understanding there is really no way to tell how far advanced it is, and this is not much use clinically anyway. Far more important is how it affects all the organ systems and if it is either well compensated, or decompensated. Portal hypertension can occur with even a mild case of full blown cirrhosis, on the other hand even a severely damaged liver might hold its own, and the portal hypertension not cause too many problems . Think of it like this- you may have cirrhosis, but that itself is not as significant as this question " how severe is your portal hypertension? Many pediatric liver transplants are done each year by living donor because out of control portal hypertension affects bleeding varicies more than it causes ascites in some kids. Ascites and lab related decompensation Will usually cause a meteoric rise in MELD/PELD score, and lead to transplant. Do you have ascites? How about portal systemic encephalopathy? These things will affect far more when you get a liver transplant than just the condition of your liver in most cases. But this is not true for cases of fulminant hepatic failure. Livers can fail dramatically and suddenly but hopefully this would put you or me at the very top of the list in our perspective regions. Stages and grades are good for pathologists and hepatologists, but are not much use to a cirrhosis patient. Far far more important is whether you have compensated or decompensate liver disease. Remember, decompensation is when ascites, edema, bleeding varicies, hepatorenal syndrome,severe hepatopulmonary syndrome, significant encephalopathy or liver failure occur. I hope this rambling helped. I am not a doctor, and this is all mostly my own opinion, although much of it is gleaned from papers by the well known in the hepatology world. Love, Bobby long life, old age, everything good-Apache prayer ____________ _________ _________ __ From: Gloria <gadamscanyahoo (DOT) ca> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Monday, August 17, 2009 10:52:50 PM Subject: Different Liver Cirrhosis Stages Probably because I am just coming out of the after effect of a dose on interferon, some of the questions or comments lots of you have made have started to suddenly rattle around in what's left of my brain. In late January 2009, I was indeed diagnosed with cirrhosis which I believe must be in early stages as my enzymes had just showed the changes. Thus, I was accepted to this latest clinical trial. I do know that away back then, it was suggested to me that they don't like to do transplants unless one can clear the virus and that I would be going to an MRI near the end. Ok, my questions, is it possible that these doctors are perhaps prepping me for a liver transplant if the TX works?? Does anyone know how progressive your cirrhosis has to be and does cirrhosis ever turn back??? Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 Model for end stage liver disease. I am not sure if UNOS covers Canada or not, but in the US, a score based on labwork is used to determine when liver transplants are done. PELD is " pedatric model for end stage liver disease score " . The score ranges from 6 t0 40. Over 20 is usually sufficient to get a transplant as soon as a match is found, but this is not true for all centers, but it is the national average at this time. Here is a nice link for you. Love, Bobby http://www.cpmc.org/advanced/liver/patients/topics/MELD.html long life, old age, everything good-Apache prayer ________________________________ To: livercirrhosissupport Sent: Tuesday, August 18, 2009 9:36:51 PM Subject: Re: Different Liver Cirrhosis Stages : I am so sorry to hear about your husband!!! How long has he had his new liver ?? I'm definitely not in the least yellow so I guess I have a whole long ways to go. To everyone - I might have asked this before and I apologize for the brain fog in advance if I did - what is a MELD or PELD score?? Gloria ____________ _________ _________ __ hey gloria well my husband had a meld score 31 and he was on the list 3 days and got a liver. well the hep c has already attack this liver and hes in worse shape than he was with his other one. hes so yellow and the doctors said today that in 30 days this liver will be done if the interferon doesn't work so lucky me i have alot to look forward to. also hes been sick 2 years and now we will have to go through all this again iam so stress. From: Bob Aragon <robwalkingeagle@ yahoo.com> Subject: Re: Different Liver Cirrhosis Stages To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Tuesday, August 18, 2009, 3:29 PM Well compensated liver disease can still include a number of symptoms. I have hepatic encephalopathy, but it is not deemed to be severe enough to be put on the transplant list. The AASLD, or American Association for the study of liver diseases is the board that many transplant programs base thier programs on, or at least the criteria. It is sad that even some people in this group have a loved one who sees a doctor who does not recognize the signs of decompensated liver disease. My own PCP did not know the difference between the two, and since I did not have any signs of decompensated liver disease, deemed me to be liver disease free. The guidlines can be found in our group files section here- http://health. groups.yahoo. com/group/ livercirrhosissu pport/files/ pdf here- http://f1.grp. yahoofs.com/ v1/MPqKSiP- WloWRa2v4FCCFHpm g13gbG5kgDnZnm3q 8G6P8PbHdlautPQM 8xu1jZH8TxY- iUddoaqi8Ctr4uSn /evalu_patient_ livertransplanta tion.pdf and here is a direct quote. Recommendations 1. Patients with cirrhosis should be referred for transplantation when they develop evidence of hepatic dysfunction (CTP > 7 and MELD > 10) or when they experience their first major complication (ascites, variceal bleeding, or hepatic encephalopathy) (II-3). 2. Children with chronic liver disease should be referred when they deviate from normal growth curves or develop evidence of hepatic dysfunction or portal hypertension (II-3). 3. Patients with type I hepatorenal syndrome should have an expedited referral for liver transplantation (II-3). all of these are considered decompensated. CTP stands for Child Turcotte Pugh scoring system. Love, Bobby ____________ _________ _________ __ From: Phyllis Delgado <pdelgado354@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Tuesday, August 18, 2009 9:51:02 AM Subject: Re: Different Liver Cirrhosis Stages what symptons are in compensated? ____________ _________ _________ __ From: Bob Aragon <robwalkingeagle@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Tuesday, August 18, 2009 4:56:44 AM Subject: Re: Different Liver Cirrhosis Stages Dear Gloria , I would like to try to take a stab at answering your question. In many cases with hepC, the liver docs have to take a chance with a transplant first-treatment second. The drugs you are taking are like chemo, toxic sommewhere on the same level as alcohol to the liver. Even a Mcs breakfast can be nearly equal to a few beers or a few belts of booze in the toxic department, but we must always weigh the risks with the benefits. The liver is indeed an amazing gland/organ and it's ability to regenerate and heal is amazing. With Cirrhosis, to my understanding there is really no way to tell how far advanced it is, and this is not much use clinically anyway. Far more important is how it affects all the organ systems and if it is either well compensated, or decompensated. Portal hypertension can occur with even a mild case of full blown cirrhosis, on the other hand even a severely damaged liver might hold its own, and the portal hypertension not cause too many problems . Think of it like this- you may have cirrhosis, but that itself is not as significant as this question " how severe is your portal hypertension? Many pediatric liver transplants are done each year by living donor because out of control portal hypertension affects bleeding varicies more than it causes ascites in some kids. Ascites and lab related decompensation Will usually cause a meteoric rise in MELD/PELD score, and lead to transplant. Do you have ascites? How about portal systemic encephalopathy? These things will affect far more when you get a liver transplant than just the condition of your liver in most cases. But this is not true for cases of fulminant hepatic failure. Livers can fail dramatically and suddenly but hopefully this would put you or me at the very top of the list in our perspective regions. Stages and grades are good for pathologists and hepatologists, but are not much use to a cirrhosis patient. Far far more important is whether you have compensated or decompensate liver disease. Remember, decompensation is when ascites, edema, bleeding varicies, hepatorenal syndrome,severe hepatopulmonary syndrome, significant encephalopathy or liver failure occur. I hope this rambling helped. I am not a doctor, and this is all mostly my own opinion, although much of it is gleaned from papers by the well known in the hepatology world. Love, Bobby long life, old age, everything good-Apache prayer ____________ _________ _________ __ From: Gloria <gadamscanyahoo (DOT) ca> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Monday, August 17, 2009 10:52:50 PM Subject: Different Liver Cirrhosis Stages Probably because I am just coming out of the after effect of a dose on interferon, some of the questions or comments lots of you have made have started to suddenly rattle around in what's left of my brain. In late January 2009, I was indeed diagnosed with cirrhosis which I believe must be in early stages as my enzymes had just showed the changes. Thus, I was accepted to this latest clinical trial. I do know that away back then, it was suggested to me that they don't like to do transplants unless one can clear the virus and that I would be going to an MRI near the end. Ok, my questions, is it possible that these doctors are perhaps prepping me for a liver transplant if the TX works?? Does anyone know how progressive your cirrhosis has to be and does cirrhosis ever turn back??? Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 Gloria, my brain is too foggy to explain the whole MELD/PELD thing, but I did want to comment that my husband never was very jaundiced, not even on the day he died. The whites of his eyes turned a bit yellow, but his skin tone never really did look jaundiced. Warm Hugs........... Diane http://auntdisexperimentallife.blogspot.com/ ________________________________ To: livercirrhosissupport Sent: Tuesday, August 18, 2009 10:36:51 PM Subject: Re: Different Liver Cirrhosis Stages : I am so sorry to hear about your husband!!! How long has he had his new liver ?? I'm definitely not in the least yellow so I guess I have a whole long ways to go. To everyone - I might have asked this before and I apologize for the brain fog in advance if I did - what is a MELD or PELD score?? Gloria ____________ _________ _________ __ hey gloria well my husband had a meld score 31 and he was on the list 3 days and got a liver. well the hep c has already attack this liver and hes in worse shape than he was with his other one. hes so yellow and the doctors said today that in 30 days this liver will be done if the interferon doesn't work so lucky me i have alot to look forward to. also hes been sick 2 years and now we will have to go through all this again iam so stress. From: Bob Aragon <robwalkingeagle@ yahoo.com> Subject: Re: Different Liver Cirrhosis Stages To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Tuesday, August 18, 2009, 3:29 PM Well compensated liver disease can still include a number of symptoms. I have hepatic encephalopathy, but it is not deemed to be severe enough to be put on the transplant list. The AASLD, or American Association for the study of liver diseases is the board that many transplant programs base thier programs on, or at least the criteria. It is sad that even some people in this group have a loved one who sees a doctor who does not recognize the signs of decompensated liver disease. My own PCP did not know the difference between the two, and since I did not have any signs of decompensated liver disease, deemed me to be liver disease free. The guidlines can be found in our group files section here- http://health. groups.yahoo. com/group/ livercirrhosissu pport/files/ pdf here- http://f1.grp. yahoofs.com/ v1/MPqKSiP- WloWRa2v4FCCFHpm g13gbG5kgDnZnm3q 8G6P8PbHdlautPQM 8xu1jZH8TxY- iUddoaqi8Ctr4uSn /evalu_patient_ livertransplanta tion.pdf and here is a direct quote. Recommendations 1. Patients with cirrhosis should be referred for transplantation when they develop evidence of hepatic dysfunction (CTP > 7 and MELD > 10) or when they experience their first major complication (ascites, variceal bleeding, or hepatic encephalopathy) (II-3). 2. Children with chronic liver disease should be referred when they deviate from normal growth curves or develop evidence of hepatic dysfunction or portal hypertension (II-3). 3. Patients with type I hepatorenal syndrome should have an expedited referral for liver transplantation (II-3). all of these are considered decompensated. CTP stands for Child Turcotte Pugh scoring system. Love, Bobby ____________ _________ _________ __ From: Phyllis Delgado <pdelgado354@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Tuesday, August 18, 2009 9:51:02 AM Subject: Re: Different Liver Cirrhosis Stages what symptons are in compensated? ____________ _________ _________ __ From: Bob Aragon <robwalkingeagle@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Tuesday, August 18, 2009 4:56:44 AM Subject: Re: Different Liver Cirrhosis Stages Dear Gloria , I would like to try to take a stab at answering your question. In many cases with hepC, the liver docs have to take a chance with a transplant first-treatment second. The drugs you are taking are like chemo, toxic sommewhere on the same level as alcohol to the liver. Even a Mcs breakfast can be nearly equal to a few beers or a few belts of booze in the toxic department, but we must always weigh the risks with the benefits. The liver is indeed an amazing gland/organ and it's ability to regenerate and heal is amazing. With Cirrhosis, to my understanding there is really no way to tell how far advanced it is, and this is not much use clinically anyway. Far more important is how it affects all the organ systems and if it is either well compensated, or decompensated. Portal hypertension can occur with even a mild case of full blown cirrhosis, on the other hand even a severely damaged liver might hold its own, and the portal hypertension not cause too many problems . Think of it like this- you may have cirrhosis, but that itself is not as significant as this question " how severe is your portal hypertension? Many pediatric liver transplants are done each year by living donor because out of control portal hypertension affects bleeding varicies more than it causes ascites in some kids. Ascites and lab related decompensation Will usually cause a meteoric rise in MELD/PELD score, and lead to transplant. Do you have ascites? How about portal systemic encephalopathy? These things will affect far more when you get a liver transplant than just the condition of your liver in most cases. But this is not true for cases of fulminant hepatic failure. Livers can fail dramatically and suddenly but hopefully this would put you or me at the very top of the list in our perspective regions. Stages and grades are good for pathologists and hepatologists, but are not much use to a cirrhosis patient. Far far more important is whether you have compensated or decompensate liver disease. Remember, decompensation is when ascites, edema, bleeding varicies, hepatorenal syndrome,severe hepatopulmonary syndrome, significant encephalopathy or liver failure occur. I hope this rambling helped. I am not a doctor, and this is all mostly my own opinion, although much of it is gleaned from papers by the well known in the hepatology world. Love, Bobby long life, old age, everything good-Apache prayer ____________ _________ _________ __ From: Gloria <gadamscanyahoo (DOT) ca> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Monday, August 17, 2009 10:52:50 PM Subject: Different Liver Cirrhosis Stages Probably because I am just coming out of the after effect of a dose on interferon, some of the questions or comments lots of you have made have started to suddenly rattle around in what's left of my brain. In late January 2009, I was indeed diagnosed with cirrhosis which I believe must be in early stages as my enzymes had just showed the changes. Thus, I was accepted to this latest clinical trial. I do know that away back then, it was suggested to me that they don't like to do transplants unless one can clear the virus and that I would be going to an MRI near the end. Ok, my questions, is it possible that these doctors are perhaps prepping me for a liver transplant if the TX works?? Does anyone know how progressive your cirrhosis has to be and does cirrhosis ever turn back??? Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 Gloria, One of the difficulties in assessing liver disease I think is its lack of routine progression or symptoms. Certain symptoms show up in some people and not in others and it is all to different degrees. Not all patients acquire all complications, but maybe only some. Even the true diagnosis without a liver biopsy is unreliable. Liver enzymes are unpredictable and are not always an indicator of the depth of disease either. These things make it frustrating for patients and most probably the caregivers too, as you can't seem to get a real handle on where you stand, how much longer, do you still have a chance to improve or only to not get worse until the very end. Comparison with each other here is good to help us all in understanding but not particularly useful in predictions of the future. for myself, I am rarely yellow, only once do I remember my eyes having a yellow tinge to them which didn't last long. Or at least I am no more yellow than usual as I have a more olive tinted skin tone. My liver enzymes have fluctuated a huge amount over the years but never as bad as my meld score would indicate. Sometimes they have been completely normal. Then of course the meld score fluctuates too. Really I think only a team of doctors can give a real assessment of time available and even that will be a loose guess at best. One day at a time is how we learn to deal with the uncertainty. Re: Different Liver Cirrhosis Stages > : > > I am so sorry to hear about your husband!!! How long has he had his new > liver ?? I'm definitely not in the least yellow so I guess I have a whole > long ways to go. > > To everyone - I might have asked this before and I apologize for the brain > fog in advance if I did - what is a MELD or PELD score?? > > Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 Thank you to everyone who has answered the MELD/PELD thing. At this point I would assume that I am not yet there so might as well just stop thinking about it... I won't know any results of the current trial I'm on until into next January, so for now, it's just day by day. Gloria ________________________________ Gloria, my brain is too foggy to explain the whole MELD/PELD thing, but I did want to comment that my husband never was very jaundiced, not even on the day he died. The whites of his eyes turned a bit yellow, but his skin tone never really did look jaundiced. Warm Hugs........ ... Diane http://auntdisexper imentallife. blogspot. com/ ____________ _________ _________ __ From: Gloria <gadamscanyahoo (DOT) ca> To: livercirrhosissuppo rtyahoogroups (DOT) . com Sent: Tuesday, August 18, 2009 10:36:51 PM Subject: Re: Different Liver Cirrhosis Stages : I am so sorry to hear about your husband!!! How long has he had his new liver ?? I'm definitely not in the least yellow so I guess I have a whole long ways to go. To everyone - I might have asked this before and I apologize for the brain fog in advance if I did - what is a MELD or PELD score?? Gloria ____________ _________ _________ __ hey gloria well my husband had a meld score 31 and he was on the list 3 days and got a liver. well the hep c has already attack this liver and hes in worse shape than he was with his other one. hes so yellow and the doctors said today that in 30 days this liver will be done if the interferon doesn't work so lucky me i have alot to look forward to. also hes been sick 2 years and now we will have to go through all this again iam so stress. From: Bob Aragon <robwalkingeagle@ yahoo.com> Subject: Re: Different Liver Cirrhosis Stages To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Tuesday, August 18, 2009, 3:29 PM Well compensated liver disease can still include a number of symptoms. I have hepatic encephalopathy, but it is not deemed to be severe enough to be put on the transplant list. The AASLD, or American Association for the study of liver diseases is the board that many transplant programs base thier programs on, or at least the criteria. It is sad that even some people in this group have a loved one who sees a doctor who does not recognize the signs of decompensated liver disease. My own PCP did not know the difference between the two, and since I did not have any signs of decompensated liver disease, deemed me to be liver disease free. The guidlines can be found in our group files section here- http://health. groups.yahoo. com/group/ livercirrhosissu pport/files/ pdf here- http://f1.grp. yahoofs.com/ v1/MPqKSiP- WloWRa2v4FCCFHpm g13gbG5kgDnZnm3q 8G6P8PbHdlautPQM 8xu1jZH8TxY- iUddoaqi8Ctr4uSn /evalu_patient_ livertransplanta tion.pdf and here is a direct quote. Recommendations 1. Patients with cirrhosis should be referred for transplantation when they develop evidence of hepatic dysfunction (CTP > 7 and MELD > 10) or when they experience their first major complication (ascites, variceal bleeding, or hepatic encephalopathy) (II-3). 2. Children with chronic liver disease should be referred when they deviate from normal growth curves or develop evidence of hepatic dysfunction or portal hypertension (II-3). 3. Patients with type I hepatorenal syndrome should have an expedited referral for liver transplantation (II-3). all of these are considered decompensated. CTP stands for Child Turcotte Pugh scoring system. Love, Bobby ____________ _________ _________ __ From: Phyllis Delgado <pdelgado354@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Tuesday, August 18, 2009 9:51:02 AM Subject: Re: Different Liver Cirrhosis Stages what symptons are in compensated? ____________ _________ _________ __ From: Bob Aragon <robwalkingeagle@ yahoo.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Tuesday, August 18, 2009 4:56:44 AM Subject: Re: Different Liver Cirrhosis Stages Dear Gloria , I would like to try to take a stab at answering your question. In many cases with hepC, the liver docs have to take a chance with a transplant first-treatment second. The drugs you are taking are like chemo, toxic sommewhere on the same level as alcohol to the liver. Even a Mcs breakfast can be nearly equal to a few beers or a few belts of booze in the toxic department, but we must always weigh the risks with the benefits. The liver is indeed an amazing gland/organ and it's ability to regenerate and heal is amazing. With Cirrhosis, to my understanding there is really no way to tell how far advanced it is, and this is not much use clinically anyway.. Far more important is how it affects all the organ systems and if it is either well compensated, or decompensated. Portal hypertension can occur with even a mild case of full blown cirrhosis, on the other hand even a severely damaged liver might hold its own, and the portal hypertension not cause too many problems . Think of it like this- you may have cirrhosis, but that itself is not as significant as this question " how severe is your portal hypertension? Many pediatric liver transplants are done each year by living donor because out of control portal hypertension affects bleeding varicies more than it causes ascites in some kids. Ascites and lab related decompensation Will usually cause a meteoric rise in MELD/PELD score, and lead to transplant. Do you have ascites? How about portal systemic encephalopathy? These things will affect far more when you get a liver transplant than just the condition of your liver in most cases. But this is not true for cases of fulminant hepatic failure. Livers can fail dramatically and suddenly but hopefully this would put you or me at the very top of the list in our perspective regions. Stages and grades are good for pathologists and hepatologists, but are not much use to a cirrhosis patient. Far far more important is whether you have compensated or decompensate liver disease. Remember, decompensation is when ascites, edema, bleeding varicies, hepatorenal syndrome,severe hepatopulmonary syndrome, significant encephalopathy or liver failure occur. I hope this rambling helped. I am not a doctor, and this is all mostly my own opinion, although much of it is gleaned from papers by the well known in the hepatology world. Love, Bobby long life, old age, everything good-Apache prayer ____________ _________ _________ __ From: Gloria <gadamscanyahoo (DOT) ca> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Monday, August 17, 2009 10:52:50 PM Subject: Different Liver Cirrhosis Stages Probably because I am just coming out of the after effect of a dose on interferon, some of the questions or comments lots of you have made have started to suddenly rattle around in what's left of my brain. In late January 2009, I was indeed diagnosed with cirrhosis which I believe must be in early stages as my enzymes had just showed the changes. Thus, I was accepted to this latest clinical trial. I do know that away back then, it was suggested to me that they don't like to do transplants unless one can clear the virus and that I would be going to an MRI near the end. Ok, my questions, is it possible that these doctors are perhaps prepping me for a liver transplant if the TX works?? Does anyone know how progressive your cirrhosis has to be and does cirrhosis ever turn back??? Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2009 Report Share Posted August 21, 2009 mitxie,i am so sorry for you and your husband. i do have a question though,sorry honey....but what genotype is your husband and what is his viral load, can they save this liver,why do they say the interferon isnt working.i ask these because my husband has hep. also and we have heard of this happening. thank you sweety you are both in my prayers,barby > > > > Subject: Re: Different Liver Cirrhosis Stages > To: livercirrhosissupport > Date: Tuesday, August 18, 2009, 3:29 PM > > > > > > > Well compensated liver disease can still include a number of symptoms. I have hepatic encephalopathy, but it is not deemed to be severe enough to be put on the transplant list. > > The AASLD, or American Association for the study of liver diseases is the board that many transplant programs base thier programs on, or at least the criteria. It is sad that even some people in this group have a loved one who sees a doctor who does not recognize the signs of decompensated liver disease. My own PCP did not know the difference between the two, and since I did not have any signs of decompensated liver disease, deemed me to be liver disease free. The guidlines can be found in our group files section here- > http://health. groups.yahoo. com/group/ livercirrhosissu pport/files/ > > pdf here- > http://f1.grp. yahoofs.com/ v1/MPqKSiP- WloWRa2v4FCCFHpm g13gbG5kgDnZnm3q 8G6P8PbHdlautPQM 8xu1jZH8TxY- iUddoaqi8Ctr4uSn /evalu_patient_ livertransplanta tion.pdf > > and here is a direct quote. > Recommendations > 1. Patients with cirrhosis should be referred for > transplantation when they develop evidence of hepatic > dysfunction (CTP > 7 and MELD > 10) or when they > experience their first major complication (ascites, > variceal bleeding, or hepatic encephalopathy) (II-3). > 2. Children with chronic liver disease should be > referred when they deviate from normal growth curves > or develop evidence of hepatic dysfunction or portal > hypertension (II-3). > 3. Patients with type I hepatorenal syndrome > should have an expedited referral for liver transplantation > (II-3). > > all of these are considered decompensated. CTP stands for Child Turcotte Pugh scoring system. > Love, Bobby > > ____________ _________ _________ __ > From: Phyllis Delgado <pdelgado354@ yahoo.com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Tuesday, August 18, 2009 9:51:02 AM > Subject: Re: Different Liver Cirrhosis Stages > > what symptons are in compensated? > > ____________ _________ _________ __ > From: Bob Aragon <robwalkingeagle@ yahoo.com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Tuesday, August 18, 2009 4:56:44 AM > Subject: Re: Different Liver Cirrhosis Stages > > Dear Gloria , I would like to try to take a > stab at answering your question. In many > cases with hepC, the liver docs have to take a chance > with a transplant first-treatment second. > The drugs you are taking are like chemo, toxic > sommewhere on the same level as alcohol to the liver. > Even a Mcs breakfast can be nearly equal to a few beers or > a few belts of booze in the toxic department, but we must always > weigh the risks with the benefits. The liver is indeed an amazing > gland/organ and it's ability to regenerate and heal is amazing. > > With Cirrhosis, to my understanding there is really no way to > tell how far advanced it is, and this is not much use clinically anyway. > Far more important is how it affects all the organ systems and if it is either well compensated, or decompensated. > Portal hypertension can occur with even a mild case of full blown cirrhosis, on the other hand > even a severely damaged liver might hold its own, and the portal hypertension > not cause too many problems . > Think of it like this- you may have cirrhosis, but that itself is not as significant > as this question " how severe is your portal hypertension? Many pediatric liver transplants > are done each year by living donor because > out of control portal hypertension affects bleeding varicies more than it causes > ascites in some kids. Ascites and lab related decompensation > Will usually cause a meteoric rise in MELD/PELD score, and lead to transplant. > Do you have ascites? How > about portal systemic encephalopathy? > These things will affect far more when you get a liver transplant than just the condition of your liver > in most cases. But this is not true for cases of fulminant hepatic failure. Livers can fail dramatically and suddenly > but hopefully this would put you or me at the very top of the list in our perspective regions. > Stages and grades are good for pathologists and hepatologists, but are not much use to a cirrhosis patient. > Far far more important is whether you have compensated or decompensate liver disease. > Remember, decompensation is when ascites, edema, bleeding varicies, hepatorenal syndrome,severe hepatopulmonary syndrome, significant encephalopathy or > liver failure occur. > I hope this rambling helped. I am not a doctor, and this is all mostly my own opinion, although much of it is gleaned > from papers by the well known in the hepatology world. Love, Bobby > > long life, old age, everything good-Apache prayer > > ____________ _________ _________ __ > From: Gloria <gadamscanyahoo (DOT) ca> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Monday, August 17, 2009 10:52:50 PM > Subject: Different Liver Cirrhosis Stages > > Probably because I am just coming out of the after effect of a dose on interferon, some of the questions or comments lots of you have made have started to suddenly rattle around in what's left of my brain. > > In late January 2009, I was indeed diagnosed with cirrhosis which I believe must be in early stages as my enzymes had just showed the changes. Thus, I was accepted to this latest clinical trial. I do know that away back then, it was suggested to me that they don't like to do transplants unless one can clear the virus and that I would be going to an MRI near the end. > > Ok, my questions, is it possible that these doctors are perhaps prepping me for a liver transplant if the TX works?? Does anyone know how progressive your cirrhosis has to be and does cirrhosis ever turn back??? > > Gloria > > Quote Link to comment Share on other sites More sharing options...
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