Guest guest Posted November 30, 2011 Report Share Posted November 30, 2011 If one has cirrhosis, does that mean it is the entire liver? If not, can the undamaged portion of the liver regenerate itself? Fran Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2011 Report Share Posted November 30, 2011 Of course, I am not a Dr; but, I do have cirrhosis. My understanding is that one could live a pretty normal life on just 20% of their liver; but, of course remaining vigilant not to harm it. No, stage 4 liver disease is classified as End of Stage Liver Disease; but, it doesn't have to be the whole liver. In fact, there are many many folks that have been ESLD for over a decade. All the while that the liver is being damaged, it is constantly making new paths for the blood, because cirrhosis is killing that part. That's why our liver get very gnarly. Someone has told me that it takes about 8 years for the liver to completely mend itself. I'm not sure that is true. In 2004, I had my 1st biopsy. It came back as stage 3 fibrosis bridging to stage 4 cirrhosis. I wonder now if the Dr. hit the right spot and that I was actually already stage 4. The only reason for wondering is because for me the cirrhosis has caused my liver to be cancerous. I know that other folks on this site will tell you lots. Especially Bobby!! I swear that man knows more about the liver than most Drs do. Gloria ________________________________  If one has cirrhosis, does that mean it is the entire liver? If not, can the undamaged portion of the liver regenerate itself? Fran Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 Dear Bev: It is true that if you have definitive proof via MRI and ultrasound or CT scan, then I think it is a safe bet. When someone makes it sound like the doctor is clueless, and they don't have a clear treatment plan, then in that case If it were me I would push for a needle biopsy. Clearly in your case, they seem to know what they are doing, though I am puzzled at how they know which parts of your liver have cirrhosis and which ones don't. I mean, image studies are not cut and dried by any means, When I was first diagnosed, my CT scans were said to be normal. Different doctors saw them differently and said that my spleen was enlarged, a clear sign of portal hypertension. Maybe they have some different kind of liver function-o meter... lol. (sorry) As for MELD scores, it is normal for it go up and down all the time. Several years ago, I was being considered for a transplant, but my MELD score went back down. I am not so eager for an evaluation now that I have these other complications with my rib tumor... love, Bobby  ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Friday, December 2, 2011 9:03 PM Subject: Re: Question  bobby, i have asked my hepatolgist several times about having a biopsy of my liver and they told me it was only nessasary if it wasn't clear on the ultrasound and mri scans.they did say that over half of my liver is cirrhosis.another thing i am really confused about is the meld score my keeps going from 20 to 13 it changes in from month to month and i feel worse all the time now.sometimes i am so tired of fighting this. just some of my thoughts. bev,tx ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Friday, December 2, 2011 3:33 PM Subject: Re: Question  Dear Fran, this sounds very very unusual. I am only a friend, not a professional doctor, and cannot give out medical advice, but when a member tells me that they have not had a biopsy, I get very suspicious. It is a difficult road to travel without a map, and a definitive diagnosis gives us a very specific map. If it were me or my loved one, I would trust only the very very best Hepatologist at a high end transplant center like Cleveland clinic or Vanderbuilt or Loma to make a diagnosis without a biopsy. Needle biopsy is the gold standard for diagnosis of end stage liver disease. Have you ever considered a second opinion? Love, Bobby ________________________________ From: f_fwb <no_reply > To: livercirrhosissupport Sent: Thursday, December 1, 2011 10:16 PM Subject: Re: Question  We have not been given a stage for my husband's cirrhosis. He has not had a biopsy. We have not had any doctor sit down and give us his time to explain cirrhosis, even after I told the one who diagnosed him that I learned everything I knew by reading the Internet. They just assume you went to med school? As far as I can recall, it was the ultra sound that resulted in the diagnosis, along with the doctor's observations of my husband's physical features, such as the shape of his legs. Fran > > Dear Fran, a diagnosis of " cirrhosis " usually means stage 4 fibrosis. It is a state of the liver tissue, and not a clinical finding of the patient. Stage 3 fibrosis usually means a serious but possibly reversible condition, and does not involve all of the liver. A good pathologist will not usually get them mixed up, but we are all human. Stage 4 fibrosis, also known as " end stage liver disease " is usually not reversible, and is considered " terminal liver disease " . It means that the entire liver is completely scarred. > > I hope this helps with any confusion. Love, Bobby > >  > > > ________________________________ > From: f_fwb <no_reply > > To: livercirrhosissupport > Sent: Wednesday, November 30, 2011 8:57 PM > Subject: Question > > >  > If one has cirrhosis, does that mean it is the entire liver? If not, can the undamaged portion of the liver regenerate itself? > > Fran > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011  I'm sorry, Jill. I cannot imagine what you are going through. I sounds awful. Keep this in mind... Ardis had 4 or 5 bleeds that she never told me about. I only found out about them after she was in the hospital the last time. (I knew about banding she had on a routine basis, but not the severe bleeds) The hepatologist came in to her room, and told us that her varicies had all disappeared! The had taken her down for an EDG because she was a quart low constantly, and they wanted to find the leak. Well, apparently, the esophageal varicies had just resolved on thier own. He was pretty surprised. I.m not telling you this to suggest that Ed.s varicies will disappear, but just to share a related story. I hope things turn out differently than how you imagine. My heart goes out to you and Ed. I.m sorry this is so hard. Love, Bobby ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Friday, December 2, 2011 10:31 PM Subject: Re: Question  Ed's hepatologist diagnosed him without a biopsy. Dr is the Asst head of the Dept of Hepatology and also part of thr transplant team at The Cleveland Clinic. He said a biopsy is invasive and not necessary in Ed's case as Ed has alot of other problems that can only stem from Cirrhosis. We go back up next week for a check up...ultrasound and doc visit. Ed is not having an EGD thios time because his insurance changed and he says i;'s too expensive and he feels good right now....and says he feels so bad after having an EGD with bandings..... Soooooo I guess he will simply bleed out one day. Do I sound callous? I'm just tired of Ed burying his head in the sand and pretending it will be okay. It's hard! My friend's husband died in August after having pretty much the same attitude as Ed.. Ed has been so lucky for about 7 years now.....how much longer can his luck hold?                                                                     Love,Jill  We don't remember days, we remember moments. Life is not measured by the breaths we take,but by the moments that take our breath away. ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Friday, December 2, 2011 6:33 PM Subject: Re: Question  Dear Fran, this sounds very very unusual. I am only a friend, not a professional doctor, and cannot give out medical advice, but when a member tells me that they have not had a biopsy, I get very suspicious. It is a difficult road to travel without a map, and a definitive diagnosis gives us a very specific map. If it were me or my loved one, I would trust only the very very best Hepatologist at a high end transplant center like Cleveland clinic or Vanderbuilt or Loma to make a diagnosis without a biopsy. Needle biopsy is the gold standard for diagnosis of end stage liver disease. Have you ever considered a second opinion? Love, Bobby ________________________________ From: f_fwb <no_reply > To: livercirrhosissupport Sent: Thursday, December 1, 2011 10:16 PM Subject: Re: Question  We have not been given a stage for my husband's cirrhosis. He has not had a biopsy. We have not had any doctor sit down and give us his time to explain cirrhosis, even after I told the one who diagnosed him that I learned everything I knew by reading the Internet. They just assume you went to med school? As far as I can recall, it was the ultra sound that resulted in the diagnosis, along with the doctor's observations of my husband's physical features, such as the shape of his legs. Fran > > Dear Fran, a diagnosis of " cirrhosis " usually means stage 4 fibrosis. It is a state of the liver tissue, and not a clinical finding of the patient. Stage 3 fibrosis usually means a serious but possibly reversible condition, and does not involve all of the liver. A good pathologist will not usually get them mixed up, but we are all human. Stage 4 fibrosis, also known as " end stage liver disease " is usually not reversible, and is considered " terminal liver disease " . It means that the entire liver is completely scarred. > > I hope this helps with any confusion. Love, Bobby > >  > > > ________________________________ > From: f_fwb <no_reply > > To: livercirrhosissupport > Sent: Wednesday, November 30, 2011 8:57 PM > Subject: Question > > >  > If one has cirrhosis, does that mean it is the entire liver? If not, can the undamaged portion of the liver regenerate itself? > > Fran > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 Thanks,Bobby. Really...if I didn't have this group I would be so lost! I only wish Ed were interested in joining.....but he expects me to do all the researching and question asking. I usually do pretty good with being supportive....but once in awhile I have to vent. I'm always grateful that you listen! I forget-how long was it between Ardis's diagnosis and her passing?                                                                           Love,Jill  We don't remember days, we remember moments. Life is not measured by the breaths we take,but by the moments that take our breath away. ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Wednesday, December 7, 2011 6:18 AM Subject: Re: Question   I'm sorry, Jill. I cannot imagine what you are going through. I sounds awful. Keep this in mind... Ardis had 4 or 5 bleeds that she never told me about. I only found out about them after she was in the hospital the last time. (I knew about banding she had on a routine basis, but not the severe bleeds) The hepatologist came in to her room, and told us that her varicies had all disappeared! The had taken her down for an EDG because she was a quart low constantly, and they wanted to find the leak. Well, apparently, the esophageal varicies had just resolved on thier own. He was pretty surprised. I.m not telling you this to suggest that Ed.s varicies will disappear, but just to share a related story. I hope things turn out differently than how you imagine. My heart goes out to you and Ed. I.m sorry this is so hard. Love, Bobby ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Friday, December 2, 2011 10:31 PM Subject: Re: Question  Ed's hepatologist diagnosed him without a biopsy. Dr is the Asst head of the Dept of Hepatology and also part of thr transplant team at The Cleveland Clinic. He said a biopsy is invasive and not necessary in Ed's case as Ed has alot of other problems that can only stem from Cirrhosis. We go back up next week for a check up...ultrasound and doc visit. Ed is not having an EGD thios time because his insurance changed and he says i;'s too expensive and he feels good right now....and says he feels so bad after having an EGD with bandings..... Soooooo I guess he will simply bleed out one day. Do I sound callous? I'm just tired of Ed burying his head in the sand and pretending it will be okay. It's hard! My friend's husband died in August after having pretty much the same attitude as Ed.. Ed has been so lucky for about 7 years now.....how much longer can his luck hold?                                                                     Love,Jill  We don't remember days, we remember moments. Life is not measured by the breaths we take,but by the moments that take our breath away. ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Friday, December 2, 2011 6:33 PM Subject: Re: Question  Dear Fran, this sounds very very unusual. I am only a friend, not a professional doctor, and cannot give out medical advice, but when a member tells me that they have not had a biopsy, I get very suspicious. It is a difficult road to travel without a map, and a definitive diagnosis gives us a very specific map. If it were me or my loved one, I would trust only the very very best Hepatologist at a high end transplant center like Cleveland clinic or Vanderbuilt or Loma to make a diagnosis without a biopsy. Needle biopsy is the gold standard for diagnosis of end stage liver disease. Have you ever considered a second opinion? Love, Bobby ________________________________ From: f_fwb <no_reply > To: livercirrhosissupport Sent: Thursday, December 1, 2011 10:16 PM Subject: Re: Question  We have not been given a stage for my husband's cirrhosis. He has not had a biopsy. We have not had any doctor sit down and give us his time to explain cirrhosis, even after I told the one who diagnosed him that I learned everything I knew by reading the Internet. They just assume you went to med school? As far as I can recall, it was the ultra sound that resulted in the diagnosis, along with the doctor's observations of my husband's physical features, such as the shape of his legs. Fran > > Dear Fran, a diagnosis of " cirrhosis " usually means stage 4 fibrosis. It is a state of the liver tissue, and not a clinical finding of the patient. Stage 3 fibrosis usually means a serious but possibly reversible condition, and does not involve all of the liver. A good pathologist will not usually get them mixed up, but we are all human. Stage 4 fibrosis, also known as " end stage liver disease " is usually not reversible, and is considered " terminal liver disease " . It means that the entire liver is completely scarred. > > I hope this helps with any confusion. Love, Bobby > >  > > > ________________________________ > From: f_fwb <no_reply > > To: livercirrhosissupport > Sent: Wednesday, November 30, 2011 8:57 PM > Subject: Question > > >  > If one has cirrhosis, does that mean it is the entire liver? If not, can the undamaged portion of the liver regenerate itself? > > Fran > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2011 Report Share Posted December 7, 2011 Jill You caregivers have a special place in my heart for sure!! Do you ever get away?? On your own?  I don't think that I could really understand how any of you do it. I believe that only after you have had the experience, would it become apparent. I have a girlfriend that looks after a fella, that had his mind erased on the job. When her shift starts, she has worked out a deal with his kids and gets an hr or two off, for her to relax in the afternoon.  She has to be aware of anything going on around , whether during the day or the night. It is awfully sad, what happened to him! My friend and her husband (back then) were friends with and a wife. However, the injury has left him so disabled that he needs round the clock care. Now, she is with him for 4 straight 24 hr periods and I see what it takes out of her!! She gets breaks and even vacation time - I'll bet you don't?? As far as I'm concerned - vent away!!! If that pent up emotion stays in you for too long, the lid will suddenly blow. ________________________________  Thanks,Bobby. Really...if I didn't have this group I would be so lost! I only wish Ed were interested in joining.....but he expects me to do all the researching and question asking. I usually do pretty good with being supportive....but once in awhile I have to vent. I'm always grateful that you listen! I forget-how long was it between Ardis's diagnosis and her passing?                                                                           Love,Jill  We don't remember days, we remember moments. Life is not measured by the breaths we take,but by the moments that take our breath away. ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Wednesday, December 7, 2011 6:18 AM Subject: Re: Question   I'm sorry, Jill. I cannot imagine what you are going through. I sounds awful. Keep this in mind... Ardis had 4 or 5 bleeds that she never told me about. I only found out about them after she was in the hospital the last time. (I knew about banding she had on a routine basis, but not the severe bleeds) The hepatologist came in to her room, and told us that her varicies had all disappeared! The had taken her down for an EDG because she was a quart low constantly, and they wanted to find the leak. Well, apparently, the esophageal varicies had just resolved on thier own. He was pretty surprised. I.m not telling you this to suggest that Ed.s varicies will disappear, but just to share a related story. I hope things turn out differently than how you imagine. My heart goes out to you and Ed. I.m sorry this is so hard. Love, Bobby ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Friday, December 2, 2011 10:31 PM Subject: Re: Question  Ed's hepatologist diagnosed him without a biopsy. Dr is the Asst head of the Dept of Hepatology and also part of thr transplant team at The Cleveland Clinic. He said a biopsy is invasive and not necessary in Ed's case as Ed has alot of other problems that can only stem from Cirrhosis. We go back up next week for a check up...ultrasound and doc visit. Ed is not having an EGD thios time because his insurance changed and he says i;'s too expensive and he feels good right now....and says he feels so bad after having an EGD with bandings..... Soooooo I guess he will simply bleed out one day. Do I sound callous? I'm just tired of Ed burying his head in the sand and pretending it will be okay. It's hard! My friend's husband died in August after having pretty much the same attitude as Ed.. Ed has been so lucky for about 7 years now.....how much longer can his luck hold?                                                                     Love,Jill  We don't remember days, we remember moments. Life is not measured by the breaths we take,but by the moments that take our breath away. ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Friday, December 2, 2011 6:33 PM Subject: Re: Question  Dear Fran, this sounds very very unusual. I am only a friend, not a professional doctor, and cannot give out medical advice, but when a member tells me that they have not had a biopsy, I get very suspicious. It is a difficult road to travel without a map, and a definitive diagnosis gives us a very specific map. If it were me or my loved one, I would trust only the very very best Hepatologist at a high end transplant center like Cleveland clinic or Vanderbuilt or Loma to make a diagnosis without a biopsy. Needle biopsy is the gold standard for diagnosis of end stage liver disease. Have you ever considered a second opinion? Love, Bobby ________________________________ From: f_fwb <no_reply > To: livercirrhosissupport Sent: Thursday, December 1, 2011 10:16 PM Subject: Re: Question  We have not been given a stage for my husband's cirrhosis. He has not had a biopsy. We have not had any doctor sit down and give us his time to explain cirrhosis, even after I told the one who diagnosed him that I learned everything I knew by reading the Internet. They just assume you went to med school? As far as I can recall, it was the ultra sound that resulted in the diagnosis, along with the doctor's observations of my husband's physical features, such as the shape of his legs. Fran > > Dear Fran, a diagnosis of " cirrhosis " usually means stage 4 fibrosis. It is a state of the liver tissue, and not a clinical finding of the patient. Stage 3 fibrosis usually means a serious but possibly reversible condition, and does not involve all of the liver. A good pathologist will not usually get them mixed up, but we are all human. Stage 4 fibrosis, also known as " end stage liver disease " is usually not reversible, and is considered " terminal liver disease " . It means that the entire liver is completely scarred. > > I hope this helps with any confusion. Love, Bobby > >  > > > ________________________________ > From: f_fwb <no_reply > > To: livercirrhosissupport > Sent: Wednesday, November 30, 2011 8:57 PM > Subject: Question > > >  > If one has cirrhosis, does that mean it is the entire liver? If not, can the undamaged portion of the liver regenerate itself? > > Fran > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2011 Report Share Posted December 8, 2011 Ardis was officially diagnosed in 2004and died in 2006... however, I know now that she was sick long before that. I met her in 1997, and she had a really big belly even then, so she had decompensated liver disease in 1997! 1997 to 2006 is 9 years, decompensated the whole time. I thought she might be pregnant the first time we met, but soon found out that was not the case. That;s how big her belly was, so I am fairly confident that it was ascites. Keep in mind that she drank to some degree the entire time I knew her. She was severely out of control at times, and other times she drank sparingly. It all depended on her financial situation. I have a close uncle who died after many years of decompensated cirrhosis, and he was a heavy heavy drinker. I know that Ed's liver disease is not alcohol related. I do not remember what is his cause. Cryptogenic? I know that both Ardis and Uncle surpassed the statistics as far as life expectancy with liver disease. The liver is such an amazing organ. I feel that any day now we are going to see some kind of break through. I stake my day to day happiness on it. I can't be happy thinking about my mortality, in fact I get a panic attack if I think about dying from bleeding varicies.    Love, Bobby For any newcomers, Ardis was my best friend in the whole world. She died from alcoholic end stage liver disease in 2006. I wrote her story down here. It has a lot of information in it, and many here who have lost a loved one or are caretakers can no doubt relate to it. Ardis Caru Fy Un (Ardis, my loved one) http://sweetlorrane.blogspot.com/  ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Wednesday, December 7, 2011 9:13 AM Subject: Re: Question  Thanks,Bobby. Really...if I didn't have this group I would be so lost! I only wish Ed were interested in joining.....but he expects me to do all the researching and question asking. I usually do pretty good with being supportive....but once in awhile I have to vent. I'm always grateful that you listen! I forget-how long was it between Ardis's diagnosis and her passing?                                                                           Love,Jill  We don't remember days, we remember moments. Life is not measured by the breaths we take,but by the moments that take our breath away. ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Wednesday, December 7, 2011 6:18 AM Subject: Re: Question   I'm sorry, Jill. I cannot imagine what you are going through. I sounds awful. Keep this in mind... Ardis had 4 or 5 bleeds that she never told me about. I only found out about them after she was in the hospital the last time. (I knew about banding she had on a routine basis, but not the severe bleeds) The hepatologist came in to her room, and told us that her varicies had all disappeared! The had taken her down for an EDG because she was a quart low constantly, and they wanted to find the leak. Well, apparently, the esophageal varicies had just resolved on thier own. He was pretty surprised. I.m not telling you this to suggest that Ed.s varicies will disappear, but just to share a related story. I hope things turn out differently than how you imagine. My heart goes out to you and Ed. I.m sorry this is so hard. Love, Bobby ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Friday, December 2, 2011 10:31 PM Subject: Re: Question  Ed's hepatologist diagnosed him without a biopsy. Dr is the Asst head of the Dept of Hepatology and also part of thr transplant team at The Cleveland Clinic. He said a biopsy is invasive and not necessary in Ed's case as Ed has alot of other problems that can only stem from Cirrhosis. We go back up next week for a check up...ultrasound and doc visit. Ed is not having an EGD thios time because his insurance changed and he says i;'s too expensive and he feels good right now....and says he feels so bad after having an EGD with bandings..... Soooooo I guess he will simply bleed out one day. Do I sound callous? I'm just tired of Ed burying his head in the sand and pretending it will be okay. It's hard! My friend's husband died in August after having pretty much the same attitude as Ed.. Ed has been so lucky for about 7 years now.....how much longer can his luck hold?                                                                     Love,Jill  We don't remember days, we remember moments. Life is not measured by the breaths we take,but by the moments that take our breath away. ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Friday, December 2, 2011 6:33 PM Subject: Re: Question  Dear Fran, this sounds very very unusual. I am only a friend, not a professional doctor, and cannot give out medical advice, but when a member tells me that they have not had a biopsy, I get very suspicious. It is a difficult road to travel without a map, and a definitive diagnosis gives us a very specific map. If it were me or my loved one, I would trust only the very very best Hepatologist at a high end transplant center like Cleveland clinic or Vanderbuilt or Loma to make a diagnosis without a biopsy. Needle biopsy is the gold standard for diagnosis of end stage liver disease. Have you ever considered a second opinion? Love, Bobby ________________________________ From: f_fwb <no_reply > To: livercirrhosissupport Sent: Thursday, December 1, 2011 10:16 PM Subject: Re: Question  We have not been given a stage for my husband's cirrhosis. He has not had a biopsy. We have not had any doctor sit down and give us his time to explain cirrhosis, even after I told the one who diagnosed him that I learned everything I knew by reading the Internet. They just assume you went to med school? As far as I can recall, it was the ultra sound that resulted in the diagnosis, along with the doctor's observations of my husband's physical features, such as the shape of his legs. Fran > > Dear Fran, a diagnosis of " cirrhosis " usually means stage 4 fibrosis. It is a state of the liver tissue, and not a clinical finding of the patient. Stage 3 fibrosis usually means a serious but possibly reversible condition, and does not involve all of the liver. A good pathologist will not usually get them mixed up, but we are all human. Stage 4 fibrosis, also known as " end stage liver disease " is usually not reversible, and is considered " terminal liver disease " . It means that the entire liver is completely scarred. > > I hope this helps with any confusion. Love, Bobby > >  > > > ________________________________ > From: f_fwb <no_reply > > To: livercirrhosissupport > Sent: Wednesday, November 30, 2011 8:57 PM > Subject: Question > > >  > If one has cirrhosis, does that mean it is the entire liver? If not, can the undamaged portion of the liver regenerate itself? > > Fran > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2011 Report Share Posted December 8, 2011 I am still in failure from cirrhosis and am 35. Am seeing heptologists and should be put on the transplant list next week. I have had no biopsies personally. Blood labs, Scopes, Ultra Sounds and CT scans it it. I think they don't want to perform a biopsy because my blood coagulation is so slow it could cause more problems than answers it would give. I see very good Doctors at one of the top Medical Centers on the west coast. My surgeon doesn't want any knives or needles anywhere near my liver and other than failure my official diagnosis is ESLD with cirrhosis. Had a burst varicies, sepsis, lost half the blood in my body and got very lucky to make 15 months and doing better. There is a reason I believe they do each patient different. If you have confidence in your team you should feel like you are on the right track. > > > > Dear Fran, a diagnosis of " cirrhosis " usually means stage 4 fibrosis. It is a state of the liver tissue, and not a clinical finding of the patient. Stage 3 fibrosis usually means a serious but possibly reversible condition, and does not involve all of the liver. A good pathologist will not usually get them mixed up, but we are all human. Stage 4 fibrosis, also known as " end stage liver disease " is usually not reversible, and is considered " terminal liver disease " . It means that the entire liver is completely scarred. > > > > I hope this helps with any confusion. Love, Bobby > > > >  > > > > > > ________________________________ > > From: f_fwb <no_reply > > > To: livercirrhosissupport > > Sent: Wednesday, November 30, 2011 8:57 PM > > Subject: Question > > > > > >  > > If one has cirrhosis, does that mean it is the entire liver? If not, can the undamaged portion of the liver regenerate itself? > > > > Fran > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2011 Report Share Posted December 8, 2011 I am about to give up Ed is saying today that his hepatic doc never said that when he was diagnosed 7 years ago that he gave hime about 5 years before he would probably need a liver. He's also denying that his doc said he is stage 4 cirrhosis. Does paranoia go along with this? Ed is saying today that I'm always negative. I am seriously considering leaving him....things have gotten so bad. Ed just doesn't care about much of anything anymore and is impotent and that apparently is my fault we don't have sex. I feel very guilty leaving him with him being so sick,but I don't know if I can take much more. I am not a saint.                                                                           Love,Jill  We don't remember days, we remember moments. Life is not measured by the breaths we take,but by the moments that take our breath away. ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Thursday, December 8, 2011 11:46 PM Subject: Re: Question  Ardis was officially diagnosed in 2004and died in 2006... however, I know now that she was sick long before that. I met her in 1997, and she had a really big belly even then, so she had decompensated liver disease in 1997! 1997 to 2006 is 9 years, decompensated the whole time. I thought she might be pregnant the first time we met, but soon found out that was not the case. That;s how big her belly was, so I am fairly confident that it was ascites. Keep in mind that she drank to some degree the entire time I knew her. She was severely out of control at times, and other times she drank sparingly. It all depended on her financial situation. I have a close uncle who died after many years of decompensated cirrhosis, and he was a heavy heavy drinker. I know that Ed's liver disease is not alcohol related. I do not remember what is his cause. Cryptogenic? I know that both Ardis and Uncle surpassed the statistics as far as life expectancy with liver disease. The liver is such an amazing organ. I feel that any day now we are going to see some kind of break through. I stake my day to day happiness on it. I can't be happy thinking about my mortality, in fact I get a panic attack if I think about dying from bleeding varicies.    Love, Bobby For any newcomers, Ardis was my best friend in the whole world. She died from alcoholic end stage liver disease in 2006. I wrote her story down here. It has a lot of information in it, and many here who have lost a loved one or are caretakers can no doubt relate to it. Ardis Caru Fy Un (Ardis, my loved one) http://sweetlorrane.blogspot.com/  ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Wednesday, December 7, 2011 9:13 AM Subject: Re: Question  Thanks,Bobby. Really...if I didn't have this group I would be so lost! I only wish Ed were interested in joining.....but he expects me to do all the researching and question asking. I usually do pretty good with being supportive....but once in awhile I have to vent. I'm always grateful that you listen! I forget-how long was it between Ardis's diagnosis and her passing?                                                                           Love,Jill  We don't remember days, we remember moments. Life is not measured by the breaths we take,but by the moments that take our breath away. ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Wednesday, December 7, 2011 6:18 AM Subject: Re: Question   I'm sorry, Jill. I cannot imagine what you are going through. I sounds awful. Keep this in mind... Ardis had 4 or 5 bleeds that she never told me about. I only found out about them after she was in the hospital the last time. (I knew about banding she had on a routine basis, but not the severe bleeds) The hepatologist came in to her room, and told us that her varicies had all disappeared! The had taken her down for an EDG because she was a quart low constantly, and they wanted to find the leak. Well, apparently, the esophageal varicies had just resolved on thier own. He was pretty surprised. I.m not telling you this to suggest that Ed.s varicies will disappear, but just to share a related story. I hope things turn out differently than how you imagine. My heart goes out to you and Ed. I.m sorry this is so hard. Love, Bobby ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Friday, December 2, 2011 10:31 PM Subject: Re: Question  Ed's hepatologist diagnosed him without a biopsy. Dr is the Asst head of the Dept of Hepatology and also part of thr transplant team at The Cleveland Clinic. He said a biopsy is invasive and not necessary in Ed's case as Ed has alot of other problems that can only stem from Cirrhosis. We go back up next week for a check up...ultrasound and doc visit. Ed is not having an EGD thios time because his insurance changed and he says i;'s too expensive and he feels good right now....and says he feels so bad after having an EGD with bandings..... Soooooo I guess he will simply bleed out one day. Do I sound callous? I'm just tired of Ed burying his head in the sand and pretending it will be okay. It's hard! My friend's husband died in August after having pretty much the same attitude as Ed.. Ed has been so lucky for about 7 years now.....how much longer can his luck hold?                                                                     Love,Jill  We don't remember days, we remember moments. Life is not measured by the breaths we take,but by the moments that take our breath away. ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Friday, December 2, 2011 6:33 PM Subject: Re: Question  Dear Fran, this sounds very very unusual. I am only a friend, not a professional doctor, and cannot give out medical advice, but when a member tells me that they have not had a biopsy, I get very suspicious. It is a difficult road to travel without a map, and a definitive diagnosis gives us a very specific map. If it were me or my loved one, I would trust only the very very best Hepatologist at a high end transplant center like Cleveland clinic or Vanderbuilt or Loma to make a diagnosis without a biopsy. Needle biopsy is the gold standard for diagnosis of end stage liver disease. Have you ever considered a second opinion? Love, Bobby ________________________________ From: f_fwb <no_reply > To: livercirrhosissupport Sent: Thursday, December 1, 2011 10:16 PM Subject: Re: Question  We have not been given a stage for my husband's cirrhosis. He has not had a biopsy. We have not had any doctor sit down and give us his time to explain cirrhosis, even after I told the one who diagnosed him that I learned everything I knew by reading the Internet. They just assume you went to med school? As far as I can recall, it was the ultra sound that resulted in the diagnosis, along with the doctor's observations of my husband's physical features, such as the shape of his legs. Fran > > Dear Fran, a diagnosis of " cirrhosis " usually means stage 4 fibrosis. It is a state of the liver tissue, and not a clinical finding of the patient. Stage 3 fibrosis usually means a serious but possibly reversible condition, and does not involve all of the liver. A good pathologist will not usually get them mixed up, but we are all human. Stage 4 fibrosis, also known as " end stage liver disease " is usually not reversible, and is considered " terminal liver disease " . It means that the entire liver is completely scarred. > > I hope this helps with any confusion. Love, Bobby > >  > > > ________________________________ > From: f_fwb <no_reply > > To: livercirrhosissupport > Sent: Wednesday, November 30, 2011 8:57 PM > Subject: Question > > >  > If one has cirrhosis, does that mean it is the entire liver? If not, can the undamaged portion of the liver regenerate itself? > > Fran > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2011 Report Share Posted December 8, 2011 Jill I know what you mean!!  Isn't it almost funny when they use such tactics in order to " win the dispute? "  Mine also used the lack of sex as being my fault. He'd said it in such a nasty way that I verbally slapped him up the side of his head. I just suggested the problem lied with him and that he should look into those pills. Next day he absolutely swore that he would never say such a thing. Another thing that I found while getting everything out of the home helost. It was written on a prescription note; but, it was saying to him that they would discuss that medication at a later date. Of course, he didn't make it for that day. After my first biopsyin2004, the Dr and I were discussing the Hep C meds. The biopsy was stage 3 and bridging to stage 4. I asked him how long he thought I had, if I didn't do treatment? He gave me 5 years. A friend of mine that has been traveling just about the same path said, holy he gave me 10 yrs, yours must be real bad. Obviously, I made it past that 5 yr mark; but, not gonna get much more. You must remember all the whining that I was doing, starting in Jan 2010. My husband was an absolute asshole. After 21 yrs, I never thought he'd pick the period that I was facing for the liver surgery; but, he did. But, it sure got rough being around him. I left about 5 weeks after I got home. In my case, I took our travel trailer and brought it to the RV park. Then, I was getting really antsy by mid Sept, because he was to pay for a bigger RV. He did that and I still absolutely love being here. Thenhe passed away on Christmas Eve last year!! Turns out he had cancer in both of his lungs and I believe it went to the brain and he literally was incapable of monitoring what he was saying. You know, the wife is always the 1st to wear their bad moods. Do you think Ed may be suffering from the encephalopathy?? Gloria ________________________________  I am about to give up Ed is saying today that his hepatic doc never said that when he was diagnosed 7 years ago that he gave hime about 5 years before he would probably need a liver. He's also denying that his doc said he is stage 4 cirrhosis. Does paranoia go along with this? Ed is saying today that I'm always negative. I am seriously considering leaving him....things have gotten so bad. Ed just doesn't care about much of anything anymore and is impotent and that apparently is my fault we don't have sex. I feel very guilty leaving him with him being so sick,but I don't know if I can take much more. I am not a saint.                                                                           Love,Jill  We don't remember days, we remember moments. Life is not measured by the breaths we take,but by the moments that take our breath away. ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Thursday, December 8, 2011 11:46 PM Subject: Re: Question  Ardis was officially diagnosed in 2004and died in 2006... however, I know now that she was sick long before that. I met her in 1997, and she had a really big belly even then, so she had decompensated liver disease in 1997! 1997 to 2006 is 9 years, decompensated the whole time. I thought she might be pregnant the first time we met, but soon found out that was not the case. That;s how big her belly was, so I am fairly confident that it was ascites. Keep in mind that she drank to some degree the entire time I knew her. She was severely out of control at times, and other times she drank sparingly. It all depended on her financial situation. I have a close uncle who died after many years of decompensated cirrhosis, and he was a heavy heavy drinker. I know that Ed's liver disease is not alcohol related. I do not remember what is his cause. Cryptogenic? I know that both Ardis and Uncle surpassed the statistics as far as life expectancy with liver disease. The liver is such an amazing organ. I feel that any day now we are going to see some kind of break through. I stake my day to day happiness on it. I can't be happy thinking about my mortality, in fact I get a panic attack if I think about dying from bleeding varicies.    Love, Bobby For any newcomers, Ardis was my best friend in the whole world. She died from alcoholic end stage liver disease in 2006. I wrote her story down here. It has a lot of information in it, and many here who have lost a loved one or are caretakers can no doubt relate to it. Ardis Caru Fy Un (Ardis, my loved one) http://sweetlorrane.blogspot.com/  _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2011 Report Share Posted December 8, 2011 Jill, I'm not sure what meds Ed is taking but I know that for me when they had me on spironactolone I was grumpy, irritable and quick to yell at others. Changing to Amiloride fixed that. Also when I start to get encephalopathy I become extremely emotional and scared and just don't want to do it anymore. I lay there with paranoia thinking no one cares when in reality I'm such a peach to be around they steer clear of me. When symptoms get worse I get flat out scared and my brain turns into a circus, but the ringmaster is on lunch break. I'm a baby when it comes to this disease having only been diagnosed 15 months ago. I lost 150lbs in the first 10 months from the water retention and not being able to absorb enough protein. I fear the worst case scenario anytime a Dr or Nurse calls me. Don't know anyone to compare it to or anyone to ask if it's normal " if " kind of things. I hope Ed snaps out of it and is able to see past his current disappointment. Good luck. Chris > > Jill > > I know what you mean!!  > > Isn't it almost funny when they use such tactics in order to " win the dispute? "  Mine also used the lack of sex as being my fault. He'd said it in such a nasty way that I verbally slapped him up the side of his head. I just suggested the problem lied with him and that he should look into those pills. Next day he absolutely swore that he would never say such a thing. Another thing that I found while getting everything out of the home helost. It was written on a prescription note; but, it was saying to him that they would discuss that medication at a later date. Of course, he didn't make it for that day. > > After my first biopsyin2004, the Dr and I were discussing the Hep C meds. The biopsy was stage 3 and bridging to stage 4. I asked him how long he thought I had, if I didn't do treatment? He gave me 5 years. A friend of mine that has been traveling just about the same path said, holy he gave me 10 yrs, yours must be real bad. Obviously, I made it past that 5 yr mark; but, not gonna get much more. > > > You must remember all the whining that I was doing, starting in Jan 2010. My husband was an absolute asshole. After 21 yrs, I never thought he'd pick the period that I was facing for the liver surgery; but, he did. But, it sure got rough being around him. I left about 5 weeks after I got home. In my case, I took our travel trailer and brought it to the RV park. Then, I was getting really antsy by mid Sept, because he was to pay for a bigger RV. He did that and I still absolutely love being here. Thenhe passed away on Christmas Eve last year!! Turns out he had cancer in both of his lungs and I believe it went to the brain and he literally was incapable of monitoring what he was saying. You know, the wife is always the 1st to wear their bad moods. > > Do you think Ed may be suffering from the encephalopathy?? > > Gloria > > > > > > ________________________________ > > >  > I am about to give up Ed is saying today that his hepatic doc never said that when he was diagnosed 7 years ago that he gave hime about 5 years before he would probably need a liver. He's also denying that his doc said he is stage 4 cirrhosis. Does paranoia go along with this? Ed is saying today that I'm always negative. I am seriously considering leaving him....things have gotten so bad. Ed just doesn't care about much of anything anymore and is impotent and that apparently is my fault we don't have sex. I feel very guilty leaving him with him being so sick,but I don't know if I can take much more. I am not a saint. > >                                        >                                    Love,Jill >  > We don't remember days, we remember moments. > Life is not measured by the breaths we take,but by the moments that take our breath away. > > ________________________________ > > To: " livercirrhosissupport " <livercirrhosissupport > > Sent: Thursday, December 8, 2011 11:46 PM > Subject: Re: Question > >  > Ardis was officially diagnosed in 2004and died in 2006... however, I know now that she was sick long before that. I met her in 1997, and she had a really big belly even then, so she had decompensated liver disease in 1997! 1997 to 2006 is 9 years, decompensated the whole time. I thought she might be pregnant the first time we met, but soon found out that was not the case. That;s how big her belly was, so I am fairly confident that it was ascites. Keep in mind that she drank to some degree the entire time I knew her. She was severely out of control at times, and other times she drank sparingly. It all depended on her financial situation. I have a close uncle who died after many years of decompensated cirrhosis, and he was a heavy heavy drinker. I know that Ed's liver disease is not alcohol related. I do not remember what is his cause. Cryptogenic? I know that both Ardis and Uncle surpassed the statistics as far as life expectancy with liver > disease. The liver is such an amazing organ. I feel that any day now we are going to see some kind of break through. I stake my day to day happiness on it. I can't be happy thinking about my mortality, in fact I get a panic attack if I think about dying from bleeding varicies.    Love, Bobby > For any newcomers, Ardis was my best friend in the whole world. She died from alcoholic end stage liver disease in 2006. I wrote her story down here. It has a lot of information in it, and many here who have lost a loved one or are caretakers can no doubt relate to it. > > Ardis Caru Fy Un (Ardis, my loved one) > > http://sweetlorrane.blogspot.com/ > >  > > _ > > > > Quote Link to comment Share on other sites More sharing options...
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