Guest guest Posted December 3, 2011 Report Share Posted December 3, 2011 I know that it's very difficult. Truthfully, I was not allowed to grieve for my husband's death, because of the mockery made of his service. Stupidly, I signed over my rights to plan his service and it got so out of hand, that I also chose not to go and none of my family went then either. My son, did go and tried to stay in the back and not be noticed. Then a member of the family said to him " oh, I guess he was kind of like your Dad " . As my son pointed out, he was not kind of - he was the only father he knew. He had also honored his stepfather, because he patterned himself after what he saw growing up. He can never go wrong, because up until the last year, he had very good values, principals and integrity. What I'd wish for you is that given some time, memories of your husband will make you feel all cozy and secure. Gloria ________________________________  awwww my hubby and I were very close we depended on each other and I so miss him Annie > To: livercirrhosissupport > From: gadamscan@... > Date: Sat, 3 Dec 2011 20:22:14 -0800 > Subject: Re: Question > > I am so sorry to hear of your loss, Annie!! My husband made sure that he'd pushed me so far away that I didn't even live at home. So, actually we were separated for 6 months before he died. I had another memory just today. I had called him in Dec last year so that I could get some of the Christmas decorations. When he couldn't talk me out of coming to the home and pick for myself - he made sure that I didn't see him. He knew.... > > > > ________________________________ > > > > > yes,,, my hubby kept going till the day before he passed..which was aug 7th...very fresh in my mind > > Annie > > To: livercirrhosissupport > > From: jillkstewart@... > > Date: Fri, 2 Dec 2011 21:49:13 -0800 > > Subject: Re: Question > > > > You're right,Annie. It's hard to watch,tho! > > > > > > > > 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: liver cirrhosis support <livercirrhosissupport > > > Sent: Saturday, December 3, 2011 12:35 AM > > Subject: RE: Question > > > > > > > > > > > > We are each responsible for our own heath...I found that out with my hubby who had heart problemsI told him I will cook for him but he wanted the bad stuff... he tried the last year but it was to late for himI am very lonely now I did my best to take care of him...but it was up to him to be well > > Annie > > > To: livercirrhosissupport > > > From: jillkstewart@... > > > Date: Fri, 2 Dec 2011 21:31:32 -0800 > > > 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 > > > > > > > > Â > > > > > > > > > > > > ________________________________ > > > > From: f_fwb <no_reply > > > > > To: livercirrhosissupport > > > > Sent: Wednesday, November 30, 2011 8:57 PM > > > > Subject: Question > > > > > > > > > > > > Â > > > > 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 4, 2011 Report Share Posted December 4, 2011 Yep,Gloria....Ed has yet...after 7 years...to make his research or make his own decisions concerning his cirrhosis.! I do everything ,...and quite frankly...I'm getting real disgusted with it all.                                                                           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: Saturday, December 3, 2011 11:16 PM Subject: Re: Question  Oh Jill I sooo understand the " husband sticking head in the sand " syndrome. I too lived with it for 21 years. Then, his time ran out!! I just have to wonder how long he was really sick and would not, go to a Dr. For heaven's sake, I was in the city hospital for 2 weeks and I know he was extremely sick then. At least, now I know. I always figured that my husband didn't want to make a decision and continually left everything up to me. THEN of course he would bit-h if it didn't go his way... Somehow, I think I was to blame for his lung cancer even. Gloria ________________________________ 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, yes paranoia is a part of this. I very could be a sign of hepatic encephalopathy. This does not sound like the ED you have talked about.  With Ardis, she sometimes seemed totally normal, and out of the blue, we would argue about silly things. I would say how blue the sky was and Ardis would insist it was orange. We literally fought like cats and dogs. Until I looked up on the internet as to what was causing it. I knew that the hospital staff said that she had hepatic encephalopathy, but I didn't know what it meant. She responded to lactulose therapy beautifully at first, and later on there was nothing I could do. I am really glad that she was still aware on her last day though. he still knew me and she still knew Sharon. Looking back, Sharon and I have discussed some events that happened and there is even a possibility that part of the problem was that Ardis and I both had encephalopathy AND were using alcohol at the same time!! Now I wish I could go back and be a fly on the wall for one of those fiascoes! (two alcoholics with alcoholic hepatitis AND end stage liver disease with hepatic encephalopathy arguing about things like religion, politics and the most controversial of all subjects- gardening.) Last week Sharon and I had a huge, complicated argument, and the next morning I found out why. She had given me my lactulose in some pepsi, and I totally did not drink it (by accident) It was still in my starbucks ice coffee glass next to the bed. She went to make me the next dose and asked for my glass, and I handed it to her, and was still full from the previous dose... oops. She said I had kept talking in circles, and now I know why. I hope you aren't really considering leaving Ed. This disease sure does suck though.here are a couple of links which might help. Love, Bobby http://www.xifaxan550.com/about-hepatic-encephalopathy/he-symptoms-and-stages.as\ px http://www.xifaxan550.com/he-resources/index.aspx#track ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Thursday, December 8, 2011 10:51 PM Subject: Re: Question Jill,  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 11, 2011 Report Share Posted December 11, 2011 No,Bobby,I'm not going to leave him. I think I just neeeded to vent. after much thought and reading your posts...I know I need to be here and I do love him so much. He cannot help what he's dealing with and I did marry him for better or worse. Sometimes we just have to get through the " worse " ! HA! I am so grateful for our " family " on this forum.....always here when I need you!                                                                           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 9, 2011 2:41 AM Subject: Re: Question  Jill, yes paranoia is a part of this. I very could be a sign of hepatic encephalopathy. This does not sound like the ED you have talked about.  With Ardis, she sometimes seemed totally normal, and out of the blue, we would argue about silly things. I would say how blue the sky was and Ardis would insist it was orange. We literally fought like cats and dogs. Until I looked up on the internet as to what was causing it. I knew that the hospital staff said that she had hepatic encephalopathy, but I didn't know what it meant. She responded to lactulose therapy beautifully at first, and later on there was nothing I could do. I am really glad that she was still aware on her last day though. he still knew me and she still knew Sharon. Looking back, Sharon and I have discussed some events that happened and there is even a possibility that part of the problem was that Ardis and I both had encephalopathy AND were using alcohol at the same time!! Now I wish I could go back and be a fly on the wall for one of those fiascoes! (two alcoholics with alcoholic hepatitis AND end stage liver disease with hepatic encephalopathy arguing about things like religion, politics and the most controversial of all subjects- gardening.) Last week Sharon and I had a huge, complicated argument, and the next morning I found out why. She had given me my lactulose in some pepsi, and I totally did not drink it (by accident) It was still in my starbucks ice coffee glass next to the bed. She went to make me the next dose and asked for my glass, and I handed it to her, and was still full from the previous dose... oops. She said I had kept talking in circles, and now I know why. I hope you aren't really considering leaving Ed. This disease sure does suck though.here are a couple of links which might help. Love, Bobby http://www.xifaxan550.com/about-hepatic-encephalopathy/he-symptoms-and-stages.as\ px http://www.xifaxan550.com/he-resources/index.aspx#track ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Thursday, December 8, 2011 10:51 PM Subject: Re: Question Jill,  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 11, 2011 Report Share Posted December 11, 2011 Jill I'm so glad that you only want to kill Ed, not leave him!! He's suffering the encephalopathy and so are you. I know what my husband was like last year and it's was horrible. Yet, we didn't know about any cancer. Gloria ________________________________ No,Bobby,I'm not going to leave him. I think I just neeeded to vent. after much thought and reading your posts...I know I need to be here and I do love him so much. He cannot help what he's dealing with and I did marry him for better or worse. Sometimes we just have to get through the " worse " ! HA! I am so grateful for our " family " on this forum.....always here when I need you!                                                                           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 9, 2011 2:41 AM Subject: Re: Question  Jill, yes paranoia is a part of this. I very could be a sign of hepatic encephalopathy. This does not sound like the ED you have talked about.  With Ardis, she sometimes seemed totally normal, and out of the blue, we would argue about silly things. I would say how blue the sky was and Ardis would insist it was orange. We literally fought like cats and dogs. Until I looked up on the internet as to what was causing it. I knew that the hospital staff said that she had hepatic encephalopathy, but I didn't know what it meant. She responded to lactulose therapy beautifully at first, and later on there was nothing I could do. I am really glad that she was still aware on her last day though. he still knew me and she still knew Sharon. Looking back, Sharon and I have discussed some events that happened and there is even a possibility that part of the problem was that Ardis and I both had encephalopathy AND were using alcohol at the same time!! Now I wish I could go back and be a fly on the wall for one of those fiascoes! (two alcoholics with alcoholic hepatitis AND end stage liver disease with hepatic encephalopathy arguing about things like religion, politics and the most controversial of all subjects- gardening.) Last week Sharon and I had a huge, complicated argument, and the next morning I found out why. She had given me my lactulose in some pepsi, and I totally did not drink it (by accident) It was still in my starbucks ice coffee glass next to the bed. She went to make me the next dose and asked for my glass, and I handed it to her, and was still full from the previous dose... oops. She said I had kept talking in circles, and now I know why. I hope you aren't really considering leaving Ed. This disease sure does suck though.here are a couple of links which might help. Love, Bobby http://www.xifaxan550.com/about-hepatic-encephalopathy/he-symptoms-and-stages.as\ px http://www.xifaxan550.com/he-resources/index.aspx#track ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Thursday, December 8, 2011 10:51 PM Subject: Re: Question Jill,  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 11, 2011 Report Share Posted December 11, 2011 Yep,Gloria...you're right! HA HA HA !!!  I will be okay! Can you suffer from Encephalopathy without having acites? His belly is huge,but his hepatologist says he doesn't have acites yet.                                                                           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: Sunday, December 11, 2011 10:20 PM Subject: Re: Question  Jill I'm so glad that you only want to kill Ed, not leave him!! He's suffering the encephalopathy and so are you. I know what my husband was like last year and it's was horrible. Yet, we didn't know about any cancer. Gloria ________________________________ No,Bobby,I'm not going to leave him. I think I just neeeded to vent. after much thought and reading your posts...I know I need to be here and I do love him so much. He cannot help what he's dealing with and I did marry him for better or worse. Sometimes we just have to get through the " worse " ! HA! I am so grateful for our " family " on this forum.....always here when I need you!                                                                           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 9, 2011 2:41 AM Subject: Re: Question  Jill, yes paranoia is a part of this. I very could be a sign of hepatic encephalopathy. This does not sound like the ED you have talked about.  With Ardis, she sometimes seemed totally normal, and out of the blue, we would argue about silly things. I would say how blue the sky was and Ardis would insist it was orange. We literally fought like cats and dogs. Until I looked up on the internet as to what was causing it. I knew that the hospital staff said that she had hepatic encephalopathy, but I didn't know what it meant. She responded to lactulose therapy beautifully at first, and later on there was nothing I could do. I am really glad that she was still aware on her last day though. he still knew me and she still knew Sharon. Looking back, Sharon and I have discussed some events that happened and there is even a possibility that part of the problem was that Ardis and I both had encephalopathy AND were using alcohol at the same time!! Now I wish I could go back and be a fly on the wall for one of those fiascoes! (two alcoholics with alcoholic hepatitis AND end stage liver disease with hepatic encephalopathy arguing about things like religion, politics and the most controversial of all subjects- gardening.) Last week Sharon and I had a huge, complicated argument, and the next morning I found out why. She had given me my lactulose in some pepsi, and I totally did not drink it (by accident) It was still in my starbucks ice coffee glass next to the bed. She went to make me the next dose and asked for my glass, and I handed it to her, and was still full from the previous dose... oops. She said I had kept talking in circles, and now I know why. I hope you aren't really considering leaving Ed. This disease sure does suck though.here are a couple of links which might help. Love, Bobby http://www.xifaxan550.com/about-hepatic-encephalopathy/he-symptoms-and-stages.as\ px http://www.xifaxan550.com/he-resources/index.aspx#track ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Thursday, December 8, 2011 10:51 PM Subject: Re: Question Jill,  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 11, 2011 Report Share Posted December 11, 2011 Jill I absolutely hated that extended belly! I asked my Dr one time when she thought I might finally give birth. I didn't have ascities either. It got so bad that I couldn't see my own feet. Mostly all of it went away, once the Hep C was cured and the liver resection. I am not looking forward to that coming back for sure. Gloria ________________________________  Yep,Gloria...you're right! HA HA HA !!!  I will be okay! Can you suffer from Encephalopathy without having acites? His belly is huge,but his hepatologist says he doesn't have acites yet.                                                                           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: Sunday, December 11, 2011 10:20 PM Subject: Re: Question  Jill I'm so glad that you only want to kill Ed, not leave him!! He's suffering the encephalopathy and so are you. I know what my husband was like last year and it's was horrible. Yet, we didn't know about any cancer. Gloria ________________________________ No,Bobby,I'm not going to leave him. I think I just neeeded to vent. after much thought and reading your posts...I know I need to be here and I do love him so much. He cannot help what he's dealing with and I did marry him for better or worse. Sometimes we just have to get through the " worse " ! HA! I am so grateful for our " family " on this forum.....always here when I need you!                                                                           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 9, 2011 2:41 AM Subject: Re: Question  Jill, yes paranoia is a part of this. I very could be a sign of hepatic encephalopathy. This does not sound like the ED you have talked about.  With Ardis, she sometimes seemed totally normal, and out of the blue, we would argue about silly things. I would say how blue the sky was and Ardis would insist it was orange. We literally fought like cats and dogs. Until I looked up on the internet as to what was causing it. I knew that the hospital staff said that she had hepatic encephalopathy, but I didn't know what it meant. She responded to lactulose therapy beautifully at first, and later on there was nothing I could do. I am really glad that she was still aware on her last day though. he still knew me and she still knew Sharon. Looking back, Sharon and I have discussed some events that happened and there is even a possibility that part of the problem was that Ardis and I both had encephalopathy AND were using alcohol at the same time!! Now I wish I could go back and be a fly on the wall for one of those fiascoes! (two alcoholics with alcoholic hepatitis AND end stage liver disease with hepatic encephalopathy arguing about things like religion, politics and the most controversial of all subjects- gardening.) Last week Sharon and I had a huge, complicated argument, and the next morning I found out why. She had given me my lactulose in some pepsi, and I totally did not drink it (by accident) It was still in my starbucks ice coffee glass next to the bed. She went to make me the next dose and asked for my glass, and I handed it to her, and was still full from the previous dose... oops. She said I had kept talking in circles, and now I know why. I hope you aren't really considering leaving Ed. This disease sure does suck though.here are a couple of links which might help. Love, Bobby http://www.xifaxan550.com/about-hepatic-encephalopathy/he-symptoms-and-stages.as\ px http://www.xifaxan550.com/he-resources/index.aspx#track ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Thursday, December 8, 2011 10:51 PM Subject: Re: Question Jill,  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...
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