Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 OH and 4 kids LOL Annie > To: livercirrhosissupport > From: annabelle56@... > Date: Fri, 25 Mar 2011 19:43:23 -0600 > Subject: intro > > > > My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had been diagnosed with cirrhosis Just about a year ago. > I have had several tests done,,they did a liver biopsy in February. I don't know a lot about this if there are any safe products to take to help > I an scared and confused. > they did the biopsy thru my jugular vein...no disease (cancer or such).. > I guess I am trying to find out from others who may have had this longer than I and any tips you may have. > More about me I have been married for almost 52 years ,11 grand kids and 6 great grand kids,I live in the thumb area of Michigan. > I guess that's it for now. > > Annie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 Dear Annie, Hi my name is Bobby Aragon. I live in Denver Colorado. I am 47, and was a caretaker for my best friend in the whole world, Ardis- whom passed away from alcoholic cirrhosis in 2006. Her death caused me to get sober , and two months after she died, I found out I have cirrhosis just like she did. http://onethreezeroonethree.blogspot.com/ I thought this was impossible at the time, because I only drank beer, but sadly, alcohol is all the same, something I did not know. I thought cirrhosis was what happened to drinkers of hard liquor only. Boy I was wrong. When I tell people how I got sick, they always do a double take, because it is a common misconception that beer is safe. I was a serious beer drinker before my loved one died, but after she died, I fell off the deep end, and went on to a drinking binge of about a month and a half, and could not stop untill I realized I was dying. I was having unstoppable nose bleeds, and many other scary things, but doctors kept telling me that I did not have any kind of liver disease whatsoever. so I kept right on drinking. I lost about a hundred pounds before it was over. I might have not stopped, but I knew in my heart, and when I was having my gallbladder taken out in November that year, the surgeon took a liver biopsy. He told me " well,pal, you definately have cirrhosis. " I asked him how much of the liver was involved, was there just some bad spots, and he said, no it is the entire thing, macronodular cirrhosis, which is big bumps, not the small ones normally associated with drinking. The main thing I would tell you from my own experience is not really advice, but rather just some pointers. First, the only cure for advance cirrhosis once severe complications start is a liver transplant. A good doctor can manage the symptoms of this disease but a lot of people make a big mistake and think a primary care doctor can manage it, but truely a hepatologist is much much better. I am not giving you medical advice, i am not a doctor, I am just saying from experience- liver disease is complicated, and serious. No one would let a primary care doctor take care of heart disease, yet many people I meet tell me they have not seen a hepatologist, for one reason or another, and I feel it is a mistake. Even if a person is not interested in a liver transplant, a good hepatologist will be much much more capable of making the person comfortable, and tracking the MELD score, thereby facilitating when hospice is needed and so on. My loved one Ardis was first seen at the teaching hospital here in Denver, and that was fine for her, but when she gave control of her care to me via power of attorney, I took her to the university and get her in to see the transplant team, and even though she did not get a transplant, when she was admitted to the hospital, she was on the transplant floor. They treat you totally different up on the transplant floor. I cannot put it in to words, but let's jkust say iot is much much nicer, and better, and competant there. My hepatologist has told me to stay away from salty food, and try to keep my sodium below 2000 Milligrams a day, which everyone is suoppoed to do anyway. He has me on a heart healthy diet, avoiding too much fat and sugar, and especially protien. I used to be a moderate to big meat eater, but now meat is nothing more than a garnish. If I do eat over two ounces of meat, I will develop high ammonia, and it causes fights with my wife, and confusion,and sleeplessness, halucinations, and a really bad taste in my mouth. My favorite food is nachos. Salt free chips, salt free beans, shredded cheese, a few jalapenos, chopped onions, chopped tomatoes, taco sauce, and a sprinklle of hamburger, plain. We weigh all the ingerdiants so I cvan keep to my salt restriction. I do not eat salt for breakfast most days, so it is not a prtoblem at all. Thanks for listening to me ramble, and thanks for joining our group(family) Love, Bobby-moderator ________________________________ To: liver cirrhosis support <livercirrhosissupport > Sent: Sat, March 26, 2011 1:43:23 AM Subject: intro My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had been diagnosed with cirrhosis Just about a year ago. I have had several tests done,,they did a liver biopsy in February. I don't know a lot about this if there are any safe products to take to help I an scared and confused. they did the biopsy thru my jugular vein...no disease (cancer or such).. I guess I am trying to find out from others who may have had this longer than I and any tips you may have. More about me I have been married for almost 52 years ,11 grand kids and 6 great grand kids,I live in the thumb area of Michigan. I guess that's it for now. Annie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 Thank you so much Bobby it was very informative ..I will tell you that I have never drank,mine is from meds and in 1978 I had the old style intestinal bypass to lose weight ( I lost weight but it don't work forever I am heavy now),,,they tell me my liver is in stress because its not getting the nutrients it needed from my surgery. They cut off 18 feet of my intestines reattached it to my stomach,,,I think thats right...I will try and follow the tips on dieting I found I also love mexican food it tastes the best to me...I have lost a small amount of weight from this illness ....I guess you can say I am a beginner I do get tired ,no interest in much except church.. You are a real blessing to me I am so sorry for the loss of your friend ,,that is hard!! hugs to you! Thanks again Annie > To: livercirrhosissupport > From: robwalkingeagle@... > Date: Fri, 25 Mar 2011 20:33:07 -0700 > Subject: Re: intro > > Dear Annie, Hi my name is Bobby Aragon. I live in Denver Colorado. I am 47, and > was a caretaker for my best friend in the whole world, Ardis- whom passed away > from alcoholic cirrhosis in 2006. Her death caused me to get sober , and two > months after she died, I found out I have cirrhosis just like she did. > > > http://onethreezeroonethree.blogspot.com/ > > I thought this was impossible at the time, because I only drank beer, but sadly, > alcohol is all the same, something I did not know. I thought cirrhosis was what > happened to drinkers of hard liquor only. Boy I was wrong. When I tell people > how I got sick, they always do a double take, because it is a common > misconception that beer is safe. I was a serious beer drinker before my loved > one died, but after she died, I fell off the deep end, and went on to a drinking > binge of about a month and a half, and could not stop untill I realized I was > dying. I was having unstoppable nose bleeds, and many other scary things, but > doctors kept telling me that I did not have any kind of liver disease > whatsoever. so I kept right on drinking. I lost about a hundred pounds before it > was over. I might have not stopped, but I knew in my heart, and when I was > having my gallbladder taken out in November that year, the surgeon took a liver > biopsy. He told me " well,pal, you definately have cirrhosis. " I asked him how > much of the liver was involved, was there just some bad spots, and he said, no > it is the entire thing, macronodular cirrhosis, which is big bumps, not the > small ones normally associated with drinking. > > The main thing I would tell you from my own experience is not really advice, but > rather just some pointers. > First, the only cure for advance cirrhosis once severe complications start is a > liver transplant. > > A good doctor can manage the symptoms of this disease but a lot of people make a > big mistake and think a primary care doctor can manage it, but truely a > hepatologist is much much better. I am not giving you medical advice, i am not a > doctor, I am just saying from experience- liver disease is complicated, and > serious. No one would let a primary care doctor take care of heart disease, yet > many people I meet tell me they have not seen a hepatologist, for one reason or > another, and I feel it is a mistake. > > Even if a person is not interested in a liver transplant, a good hepatologist > will be much much more capable of making the person comfortable, and tracking > the MELD score, thereby facilitating when hospice is needed and so on. My loved > one Ardis was first seen at the teaching hospital here in Denver, and that was > fine for her, but when she gave control of her care to me via power of attorney, > I took her to the university and get her in to see the transplant team, and even > though she did not get a transplant, when she was admitted to the hospital, she > was on the transplant floor. They treat you totally different up on the > transplant floor. I cannot put it in to words, but let's jkust say iot is much > much nicer, and better, and competant there. > > My hepatologist has told me to stay away from salty food, and try to keep my > sodium below 2000 Milligrams a day, which everyone is suoppoed to do anyway. He > has me on a heart healthy diet, avoiding too much fat and sugar, and especially > protien. I used to be a moderate to big meat eater, but now meat is nothing more > than a garnish. If I do eat over two ounces of meat, I will develop high > ammonia, and it causes fights with my wife, and confusion,and sleeplessness, > halucinations, and a really bad taste in my mouth. My favorite food is nachos. > Salt free chips, salt free beans, shredded cheese, a few jalapenos, chopped > onions, chopped tomatoes, taco sauce, and a sprinklle of hamburger, plain. We > weigh all the ingerdiants so I cvan keep to my salt restriction. I do not eat > salt for breakfast most days, so it is not a prtoblem at all. > > Thanks for listening to me ramble, and thanks for joining our group(family) > Love, Bobby-moderator > > > > > > > > ________________________________ > > To: liver cirrhosis support <livercirrhosissupport > > Sent: Sat, March 26, 2011 1:43:23 AM > Subject: intro > > > > > My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had been > diagnosed with cirrhosis Just about a year ago. > I have had several tests done,,they did a liver biopsy in February. I don't > know a lot about this if there are any safe products to take to help > I an scared and confused. > they did the biopsy thru my jugular vein...no disease (cancer or such).. > I guess I am trying to find out from others who may have had this longer than I > and any tips you may have. > More about me I have been married for almost 52 years ,11 grand kids and 6 great > grand kids,I live in the thumb area of Michigan. > I guess that's it for now. > > Annie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2011 Report Share Posted March 26, 2011 Annie - Welcome to the group. I am a 67 year old woman, diagnosed 12 years ago, origin unknown as I didn't drink excessively or have hep c either. But liver problems do run in my family, and there are a couple of other possibiliteis oe being that I was very overweight for a number of years. I have the fatty liver type, same as those who did drink. I did lose some weight and then was prescribed neurontine/gabapentin which made it very difficult to lose any more, so I finally gave up after losing 60 pounds, gained 20 back eventually but have lost 10 pounds in the last year due to other medical problems. I will take the weight gain. I also get very tired. Have found I have to pace myself. I haven't lost interest in things, just know I can't do everything. Church is my first priority, I play most Sundays, and choir practice on Friday afternoon and Bible Study on Tues. night. And then I try to work in my drs. appt around those so I have a day of rest before having to be active. Doing the things I like gives me adrenaline for the moment, but then I get home and crash. I am so glad for the internet and cell phones tokeep in touch with friends and family as the closest lives 190 minutes from me and others as far as 3 days. We are like a family here, and feel free to mention your relationship to your church, it is allowed. For everybody's info, my new grandson came home from the hospital today looking just like a baby should, but still one month before he was supposed to have been born. My daughter sent me a video of him after he had finished nursing, called his condition a milk induced coma. And she also sent a picture of him in his car seat as they were setting off for home. You can find both on my facebook page Jan Holman. The other little boy on the Lynsey Faulkner posts is my great grandson. God is great. God is good. I had the assurance from the second day after the grandson was born 2 1/2 months early that everything was going to be just fine. And it is. Now, my daughter just needs to get some rest Jan Mom, Grandma and Great grandma. I''m not really that old. Am I? My mother is having a terrible time getting it into her head that one of these boys is her great grandson and the other is her great great grandson. PS. Bobby, I took a picture using my netbook and tried to download it to the photo files, but some other company came up and I couldn't get it here, did get it on facebook but is so dark, if you can guide me through the procedure, I will try to get a brighter pictures. > > > Thank you so much Bobby  it was very informative ..I will tell you that I have never drank,mine is from meds > and in 1978 I had the old style intestinal bypass to lose weight ( I lost weight but it don't work forever I am heavy now),,,they tell me my liver is in stress because its not getting the nutrients it needed from my surgery. > They cut off 18 feet of my intestines reattached it  to my stomach,,,I think thats right...I will try and follow the tips on dieting > I found I also love mexican food it tastes the best to me...I have lost a small amount of weight from this illness  ....I guess you can say I am a beginner > I do get tired ,no interest in much except church.. > You are a real blessing to me > I am so sorry for the loss of your friend ,,that is hard!!  hugs to you! > Thanks again > Annie > > > >> To: livercirrhosissupport >> From: robwalkingeagle@... >> Date: Fri, 25 Mar 2011 20:33:07 -0700 >> Subject: Re: intro >> >> Dear Annie, Hi my name is Bobby Aragon. I live in Denver Colorado. I am 47, and >> was a caretaker for my best friend in the whole world, Ardis- whom passed away >> from alcoholic cirrhosis in 2006. Her death caused me to get sober , and two >> months after she died, I found out I  have cirrhosis just like she did. >> >> >> http://onethreezeroonethree.blogspot.com/ >> >> I thought this was impossible at the time, because I only drank beer, but sadly, >> alcohol is all the same, something I did not know. I thought cirrhosis was what >> happened to drinkers of hard liquor only. Boy I was wrong. When I tell people >> how I got sick, they always do a double take, because it is a common >> misconception that beer is safe. I was a serious beer drinker before my loved >> one died, but after she died, I fell off the deep end, and went on to a drinking >> binge of about a month and a half, and could not stop untill I realized I was >> dying. I was having unstoppable nose bleeds, and many other scary things, but >> doctors kept telling me that I did not have any kind of liver disease >> whatsoever. so I kept right on drinking. I lost about a hundred pounds before it >> was over. I might have not stopped, but I knew in my heart, and when I was >> having my gallbladder taken out in November that year, the surgeon took a liver >> biopsy. He told me " well,pal, you definately have cirrhosis. " I asked him how >> much of the liver was involved, was there just some bad spots, and he said, no >> it is the entire thing, macronodular cirrhosis, which is big bumps, not the >> small ones normally associated with drinking. >> >> The main thing I would tell you from my own experience is not really advice, but >> rather just some pointers. >>  First, the only cure for advance cirrhosis once severe complications start is a >> liver transplant. >> >> A good doctor can manage the symptoms of this disease but a lot of people make a >> big mistake and think a primary care doctor can manage it, but truely a >> hepatologist is much much better. I am not giving you medical advice, i am not a >> doctor, I am just saying from experience- liver disease is complicated, and >> serious. No one would let a primary care doctor take care of heart disease, yet >> many people I meet tell me they have not seen a hepatologist, for one reason or >> another, and I feel it is a mistake. >> >> Even if a person is not interested in a liver transplant, a good hepatologist >> will be much much more capable of making the person comfortable, and tracking >> the MELD score, thereby facilitating when hospice is needed and so on. My loved >> one Ardis was first seen at the teaching hospital here in Denver, and that was >> fine for her, but when she gave control of her care to me via power of attorney, >> I took her to the university and get her in to see the transplant team, and even >> though she did not get a transplant, when she was admitted to the hospital, she >> was on the transplant floor. They treat you totally different up on the >> transplant floor. I cannot put it in to words, but let's jkust say iot is much >> much nicer, and better, and competant there. >> >> My hepatologist has told me to stay away from salty food, and try to keep my >> sodium below 2000 Milligrams a day, which everyone is suoppoed to do anyway. He >> has me on a heart healthy diet, avoiding too much fat and sugar, and especially >> protien. I used to be a moderate to big meat eater, but now meat is nothing more >> than a garnish. If I do eat over two ounces of meat, I will develop high >> ammonia, and it causes fights with my wife, and confusion,and sleeplessness, >> halucinations, and a really bad taste in my mouth. My favorite food is nachos. >> Salt free chips, salt free beans, shredded cheese, a few jalapenos, chopped >> onions, chopped tomatoes, taco sauce, and a sprinklle of hamburger, plain. We >> weigh all the ingerdiants so I cvan keep to my salt restriction. I do not eat >> salt for breakfast most days, so it is not a prtoblem at all. >> >> Thanks for listening to me ramble, and thanks for joining our group(family) >> Love, Bobby-moderator >> >> >> >> >> >> >> >> ________________________________ >> >> To: liver cirrhosis support <livercirrhosissupport > >> Sent: Sat, March 26, 2011 1:43:23 AM >> Subject: intro >> >> >> >> >> My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had been >> diagnosed with cirrhosis Just about a year ago. >> I have  had several tests done,,they did a liver biopsy  in February. I don't >> know a lot about this if there are any safe products to take to help >> I an scared and confused. >> they did the biopsy thru my jugular vein...no disease (cancer or such).. >> I guess I am trying to find out from others who may have had this longer than I >> and any tips you may have. >> More about me I have been married for almost 52 years ,11 grand kids and 6 great >> grand kids,I live in the thumb area of Michigan. >> I guess that's it for now. >> >> Annie >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2011 Report Share Posted March 26, 2011 Good morning folks. The posts today were so so helpful to me. I am not a drinker either and to hear so many others say the same sure lifted my spirits. The first thing everyone thinks is that you were an alcoholic. What a surprise when I heard I had liver cirrhosis, I guess it is end stage. It was never really explained thoroughly. I too had liver disease in my family (mother, also not a drinker), Go figure!! I am in a quandry though. I have some sort of blood disorder where I need protein. Now I read all over the place that we need low protein, low salt diets. So, darned if you don't and darned if you do!! The fatigue is amazing though. I get so sleepy and have no energy or urge to do stuff. Hopefully when summer gets here it will be better, I am soo cold all the time. The hematologist says he thinks the blood disorder is because of the liver yet previously they all said no way. I see him as well as the GI doctor (every six months) and now once a year I will see a hepatologist( I guess) at the Lahey Clinic in Boston. All she did was give me Nadolol to keep my blood pressure down because I have the gastric varices and the GI guy gave me omeprazole. That's about all the treatment I am getting. I am kinda lost as to what's going on. Is it my age (73) and they figure I will not last much longer anyhow. It is kind of depressing. The other night I felt like dead woman walking. When I get like that though the Lord grabs ahold of me and says hang on child, I am walking with you and we will make it together. PS my mother passed with the same symptoms listed on the info page and I am happy to say it was very peaceful. > > > Thank you so much Bobby  it was very informative ..I will tell you that I have never drank,mine is from meds > and in 1978 I had the old style intestinal bypass to lose weight ( I lost weight but it don't work forever I am heavy now),,,they tell me my liver is in stress because its not getting the nutrients it needed from my surgery. > They cut off 18 feet of my intestines reattached it  to my stomach,,,I think thats right...I will try and follow the tips on dieting > I found I also love mexican food it tastes the best to me...I have lost a small amount of weight from this illness  ....I guess you can say I am a beginner > I do get tired ,no interest in much except church.. > You are a real blessing to me > I am so sorry for the loss of your friend ,,that is hard!!  hugs to you! > Thanks again > Annie > > > >> To: livercirrhosissupport >> From: robwalkingeagle@... >> Date: Fri, 25 Mar 2011 20:33:07 -0700 >> Subject: Re: intro >> >> Dear Annie, Hi my name is Bobby Aragon. I live in Denver Colorado. I am 47, and >> was a caretaker for my best friend in the whole world, Ardis- whom passed away >> from alcoholic cirrhosis in 2006. Her death caused me to get sober , and two >> months after she died, I found out I  have cirrhosis just like she did. >> >> >> http://onethreezeroonethree.blogspot.com/ >> >> I thought this was impossible at the time, because I only drank beer, but sadly, >> alcohol is all the same, something I did not know. I thought cirrhosis was what >> happened to drinkers of hard liquor only. Boy I was wrong. When I tell people >> how I got sick, they always do a double take, because it is a common >> misconception that beer is safe. I was a serious beer drinker before my loved >> one died, but after she died, I fell off the deep end, and went on to a drinking >> binge of about a month and a half, and could not stop untill I realized I was >> dying. I was having unstoppable nose bleeds, and many other scary things, but >> doctors kept telling me that I did not have any kind of liver disease >> whatsoever. so I kept right on drinking. I lost about a hundred pounds before it >> was over. I might have not stopped, but I knew in my heart, and when I was >> having my gallbladder taken out in November that year, the surgeon took a liver >> biopsy. He told me " well,pal, you definately have cirrhosis. " I asked him how >> much of the liver was involved, was there just some bad spots, and he said, no >> it is the entire thing, macronodular cirrhosis, which is big bumps, not the >> small ones normally associated with drinking. >> >> The main thing I would tell you from my own experience is not really advice, but >> rather just some pointers. >>  First, the only cure for advance cirrhosis once severe complications start is a >> liver transplant. >> >> A good doctor can manage the symptoms of this disease but a lot of people make a >> big mistake and think a primary care doctor can manage it, but truely a >> hepatologist is much much better. I am not giving you medical advice, i am not a >> doctor, I am just saying from experience- liver disease is complicated, and >> serious. No one would let a primary care doctor take care of heart disease, yet >> many people I meet tell me they have not seen a hepatologist, for one reason or >> another, and I feel it is a mistake. >> >> Even if a person is not interested in a liver transplant, a good hepatologist >> will be much much more capable of making the person comfortable, and tracking >> the MELD score, thereby facilitating when hospice is needed and so on. My loved >> one Ardis was first seen at the teaching hospital here in Denver, and that was >> fine for her, but when she gave control of her care to me via power of attorney, >> I took her to the university and get her in to see the transplant team, and even >> though she did not get a transplant, when she was admitted to the hospital, she >> was on the transplant floor. They treat you totally different up on the >> transplant floor. I cannot put it in to words, but let's jkust say iot is much >> much nicer, and better, and competant there. >> >> My hepatologist has told me to stay away from salty food, and try to keep my >> sodium below 2000 Milligrams a day, which everyone is suoppoed to do anyway. He >> has me on a heart healthy diet, avoiding too much fat and sugar, and especially >> protien. I used to be a moderate to big meat eater, but now meat is nothing more >> than a garnish. If I do eat over two ounces of meat, I will develop high >> ammonia, and it causes fights with my wife, and confusion,and sleeplessness, >> halucinations, and a really bad taste in my mouth. My favorite food is nachos. >> Salt free chips, salt free beans, shredded cheese, a few jalapenos, chopped >> onions, chopped tomatoes, taco sauce, and a sprinklle of hamburger, plain. We >> weigh all the ingerdiants so I cvan keep to my salt restriction. I do not eat >> salt for breakfast most days, so it is not a prtoblem at all. >> >> Thanks for listening to me ramble, and thanks for joining our group(family) >> Love, Bobby-moderator >> >> >> >> >> >> >> >> ________________________________ >> >> To: liver cirrhosis support <livercirrhosissupport > >> Sent: Sat, March 26, 2011 1:43:23 AM >> Subject: intro >> >> >> >> >> My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had been >> diagnosed with cirrhosis Just about a year ago. >> I have  had several tests done,,they did a liver biopsy  in February. I don't >> know a lot about this if there are any safe products to take to help >> I an scared and confused. >> they did the biopsy thru my jugular vein...no disease (cancer or such).. >> I guess I am trying to find out from others who may have had this longer than I >> and any tips you may have. >> More about me I have been married for almost 52 years ,11 grand kids and 6 great >> grand kids,I live in the thumb area of Michigan. >> I guess that's it for now. >> >> Annie >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2011 Report Share Posted March 26, 2011 Hi Annie... when you find out more stuff, let me know too. I was told in the fall of 2010 that I had this disease. Had the usual tests, liver biopsy, bone marrow, the wonderful oscopies and such and poof, nobody says much else except I have nonalcoholic cirrhosis of the liver. I get very tired but manage to do stuff. I keep reminding myself of something I heard a while back. I am only as sick, tired or depressed as I decide to be. Take care. I am glad I found this group. I am fairly new here as well. Lorraine Subject: RE: intro To: " liver cirrhosis support " <livercirrhosissupport > Date: Saturday, March 26, 2011, 1:46 AM  OH and 4 kids LOL Annie > To: livercirrhosissupport > From: annabelle56@... > Date: Fri, 25 Mar 2011 19:43:23 -0600 > Subject: intro > > > > My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had been diagnosed with cirrhosis Just about a year ago. > I have had several tests done,,they did a liver biopsy in February. I don't know a lot about this if there are any safe products to take to help > I an scared and confused. > they did the biopsy thru my jugular vein...no disease (cancer or such).. > I guess I am trying to find out from others who may have had this longer than I and any tips you may have. > More about me I have been married for almost 52 years ,11 grand kids and 6 great grand kids,I live in the thumb area of Michigan. > I guess that's it for now. > > Annie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2011 Report Share Posted March 26, 2011 your story sounds much like mine ,,,we are trying to figure out what caused it.. I never had hepatitis, no drinking,,,just fat and I used a lot of ibuprofen..I had bad headaches those are gone now . I have lost 20lbs I think that would be a good thing to lose weight My husband is a preacher and we have pastored churches in the past,,he is almost 72 ,,,we attend a church in Flint and he preaches there some,,,I still love to sing ,,,,,God has been very good to me and my family we also had twins born at 29 weeks almost 10 years ago now they were 2 1/2 lbs each they are doing wonderful now So many things I need to write a book :-) thank you all for accepting me Annie > To: livercirrhosissupport > From: janholman@... > Date: Sat, 26 Mar 2011 01:53:58 -0700 > Subject: Re: intro > > Annie - Welcome to the group. I am a 67 year old woman, diagnosed 12 > years ago, origin unknown as I didn't drink excessively or have hep c > either. But liver problems do run in my family, and there are a > couple of other possibiliteis oe being that I was very overweight for > a number of years. I have the fatty liver type, same as those who did > drink. I did lose some weight and then was prescribed > neurontine/gabapentin which made it very difficult to lose any more, > so I finally gave up after losing 60 pounds, gained 20 back eventually > but have lost 10 pounds in the last year due to other medical > problems. I will take the weight gain. I also get very tired. Have > found I have to pace myself. I haven't lost interest in things, just > know I can't do everything. Church is my first priority, I play most > Sundays, and choir practice on Friday afternoon and Bible Study on > Tues. night. And then I try to work in my drs. appt around those so I > have a day of rest before having to be active. Doing the things I > like gives me adrenaline for the moment, but then I get home and > crash. I am so glad for the internet and cell phones tokeep in touch > with friends and family as the closest lives 190 minutes from me and > others as far as 3 days. We are like a family here, and feel free to > mention your relationship to your church, it is allowed. > > For everybody's info, my new grandson came home from the hospital > today looking just like a baby should, but still one month before he > was supposed to have been born. My daughter sent me a video of him > after he had finished nursing, called his condition a milk induced > coma. And she also sent a picture of him in his car seat as they were > setting off for home. You can find both on my facebook page Jan > Holman. The other little boy on the Lynsey Faulkner posts is my great > grandson. God is great. God is good. I had the assurance from the > second day after the grandson was born 2 1/2 months early that > everything was going to be just fine. And it is. Now, my daughter > just needs to get some rest Jan Mom, Grandma and Great grandma. > I''m not really that old. Am I? My mother is having a terrible time > getting it into her head that one of these boys is her great grandson > and the other is her great great grandson. > > PS. Bobby, I took a picture using my netbook and tried to download it > to the photo files, but some other company came up and I couldn't get > it here, did get it on facebook but is so dark, if you can guide me > through the procedure, I will try to get a brighter pictures. > > > > > > > > > Thank you so much Bobby it was very informative ..I will tell you that I have never drank,mine is from meds > > and in 1978 I had the old style intestinal bypass to lose weight ( I lost weight but it don't work forever I am heavy now),,,they tell me my liver is in stress because its not getting the nutrients it needed from my surgery. > > They cut off 18 feet of my intestines reattached it to my stomach,,,I think thats right...I will try and follow the tips on dieting > > I found I also love mexican food it tastes the best to me...I have lost a small amount of weight from this illness ....I guess you can say I am a beginner > > I do get tired ,no interest in much except church.. > > You are a real blessing to me > > I am so sorry for the loss of your friend ,,that is hard!! hugs to you! > > Thanks again > > Annie > > > > > > > >> To: livercirrhosissupport > >> From: robwalkingeagle@... > >> Date: Fri, 25 Mar 2011 20:33:07 -0700 > >> Subject: Re: intro > >> > >> Dear Annie, Hi my name is Bobby Aragon. I live in Denver Colorado. I am 47, and > >> was a caretaker for my best friend in the whole world, Ardis- whom passed away > >> from alcoholic cirrhosis in 2006. Her death caused me to get sober , and two > >> months after she died, I found out I have cirrhosis just like she did. > >> > >> > >> http://onethreezeroonethree.blogspot.com/ > >> > >> I thought this was impossible at the time, because I only drank beer, but sadly, > >> alcohol is all the same, something I did not know. I thought cirrhosis was what > >> happened to drinkers of hard liquor only. Boy I was wrong. When I tell people > >> how I got sick, they always do a double take, because it is a common > >> misconception that beer is safe. I was a serious beer drinker before my loved > >> one died, but after she died, I fell off the deep end, and went on to a drinking > >> binge of about a month and a half, and could not stop untill I realized I was > >> dying. I was having unstoppable nose bleeds, and many other scary things, but > >> doctors kept telling me that I did not have any kind of liver disease > >> whatsoever. so I kept right on drinking. I lost about a hundred pounds before it > >> was over. I might have not stopped, but I knew in my heart, and when I was > >> having my gallbladder taken out in November that year, the surgeon took a liver > >> biopsy. He told me " well,pal, you definately have cirrhosis. " I asked him how > >> much of the liver was involved, was there just some bad spots, and he said, no > >> it is the entire thing, macronodular cirrhosis, which is big bumps, not the > >> small ones normally associated with drinking. > >> > >> The main thing I would tell you from my own experience is not really advice, but > >> rather just some pointers. > >> First, the only cure for advance cirrhosis once severe complications start is a > >> liver transplant. > >> > >> A good doctor can manage the symptoms of this disease but a lot of people make a > >> big mistake and think a primary care doctor can manage it, but truely a > >> hepatologist is much much better. I am not giving you medical advice, i am not a > >> doctor, I am just saying from experience- liver disease is complicated, and > >> serious. No one would let a primary care doctor take care of heart disease, yet > >> many people I meet tell me they have not seen a hepatologist, for one reason or > >> another, and I feel it is a mistake. > >> > >> Even if a person is not interested in a liver transplant, a good hepatologist > >> will be much much more capable of making the person comfortable, and tracking > >> the MELD score, thereby facilitating when hospice is needed and so on. My loved > >> one Ardis was first seen at the teaching hospital here in Denver, and that was > >> fine for her, but when she gave control of her care to me via power of attorney, > >> I took her to the university and get her in to see the transplant team, and even > >> though she did not get a transplant, when she was admitted to the hospital, she > >> was on the transplant floor. They treat you totally different up on the > >> transplant floor. I cannot put it in to words, but let's jkust say iot is much > >> much nicer, and better, and competant there. > >> > >> My hepatologist has told me to stay away from salty food, and try to keep my > >> sodium below 2000 Milligrams a day, which everyone is suoppoed to do anyway. He > >> has me on a heart healthy diet, avoiding too much fat and sugar, and especially > >> protien. I used to be a moderate to big meat eater, but now meat is nothing more > >> than a garnish. If I do eat over two ounces of meat, I will develop high > >> ammonia, and it causes fights with my wife, and confusion,and sleeplessness, > >> halucinations, and a really bad taste in my mouth. My favorite food is nachos. > >> Salt free chips, salt free beans, shredded cheese, a few jalapenos, chopped > >> onions, chopped tomatoes, taco sauce, and a sprinklle of hamburger, plain. We > >> weigh all the ingerdiants so I cvan keep to my salt restriction. I do not eat > >> salt for breakfast most days, so it is not a prtoblem at all. > >> > >> Thanks for listening to me ramble, and thanks for joining our group(family) > >> Love, Bobby-moderator > >> > >> > >> > >> > >> > >> > >> > >> ________________________________ > >> > >> To: liver cirrhosis support <livercirrhosissupport > > >> Sent: Sat, March 26, 2011 1:43:23 AM > >> Subject: intro > >> > >> > >> > >> > >> My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had been > >> diagnosed with cirrhosis Just about a year ago. > >> I have had several tests done,,they did a liver biopsy in February. I don't > >> know a lot about this if there are any safe products to take to help > >> I an scared and confused. > >> they did the biopsy thru my jugular vein...no disease (cancer or such).. > >> I guess I am trying to find out from others who may have had this longer than I > >> and any tips you may have. > >> More about me I have been married for almost 52 years ,11 grand kids and 6 great > >> grand kids,I live in the thumb area of Michigan. > >> I guess that's it for now. > >> > >> Annie > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2011 Report Share Posted March 26, 2011 welcome to you too :-) I will pass on more info as I find out Annie > To: livercirrhosissupport > From: didjeat72@... > Date: Sat, 26 Mar 2011 08:23:16 -0700 > Subject: RE: intro > > Hi Annie... when you find out more stuff, let me know too. I was told in the fall of 2010 that I had this disease. Had the usual tests, liver biopsy, bone marrow, the wonderful oscopies and such and poof, nobody says much else except I have nonalcoholic cirrhosis of the liver. I get very tired but manage to do stuff. I keep reminding myself of something I heard a while back. I am only as sick, tired or depressed as I decide to be. Take care. I am glad I found this group. I am fairly new here as well. Lorraine > > > > > > Subject: RE: intro > To: " liver cirrhosis support " <livercirrhosissupport > > Date: Saturday, March 26, 2011, 1:46 AM > > > > > > > > OH and 4 kids LOL > > Annie > > > To: livercirrhosissupport > > From: annabelle56@... > > Date: Fri, 25 Mar 2011 19:43:23 -0600 > > Subject: intro > > > > > > > > My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had been diagnosed with cirrhosis Just about a year ago. > > I have had several tests done,,they did a liver biopsy in February. I don't know a lot about this if there are any safe products to take to help > > I an scared and confused. > > they did the biopsy thru my jugular vein...no disease (cancer or such).. > > I guess I am trying to find out from others who may have had this longer than I and any tips you may have. > > More about me I have been married for almost 52 years ,11 grand kids and 6 great grand kids,I live in the thumb area of Michigan. > > I guess that's it for now. > > > > Annie > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2011 Report Share Posted March 26, 2011 I have no family history of cirrhosis,,,,,,, I see a hematologist and a gastroenterologist and on nadolol and omneprazole I am suppose to take vitamins to but I heard that could be hard on your liver I don't take pains pill unless its very necessary Annie > To: livercirrhosissupport > From: didjeat72@... > Date: Sat, 26 Mar 2011 08:18:15 -0700 > Subject: Re: intro > > Good morning folks. The posts today were so so helpful to me. I am not a drinker either and to hear so many others say the same sure lifted my spirits. The first thing everyone thinks is that you were an alcoholic. What a surprise when I heard I had liver cirrhosis, I guess it is end stage. It was never really explained thoroughly. I too had liver disease in my family (mother, also not a drinker), Go figure!! I am in a quandry though. I have some sort of blood disorder where I need protein. Now I read all over the place that we need low protein, low salt diets. So, darned if you don't and darned if you do!! The fatigue is amazing though. I get so sleepy and have no energy or urge to do stuff. Hopefully when summer gets here it will be better, I am soo cold all the time. The hematologist says he thinks the blood disorder is because of the liver yet previously they all said no way. I see him as well as the GI doctor (every six months) and now once a > year I will see a hepatologist( I guess) at the Lahey Clinic in Boston. All she did was give me Nadolol to keep my blood pressure down because I have the gastric varices and the GI guy gave me omeprazole. That's about all the treatment I am getting. I am kinda lost as to what's going on. Is it my age (73) and they figure I will not last much longer anyhow. It is kind of depressing. The other night I felt like dead woman walking. When I get like that though the Lord grabs ahold of me and says hang on child, I am walking with you and we will make it together. PS my mother passed with the same symptoms listed on the info page and I am happy to say it was very peaceful. > > > > > > > > Thank you so much Bobby it was very informative ..I will tell you that I have never drank,mine is from meds > > and in 1978 I had the old style intestinal bypass to lose weight ( I lost weight but it don't work forever I am heavy now),,,they tell me my liver is in stress because its not getting the nutrients it needed from my surgery. > > They cut off 18 feet of my intestines reattached it to my stomach,,,I think thats right...I will try and follow the tips on dieting > > I found I also love mexican food it tastes the best to me...I have lost a small amount of weight from this illness ....I guess you can say I am a beginner > > I do get tired ,no interest in much except church.. > > You are a real blessing to me > > I am so sorry for the loss of your friend ,,that is hard!! hugs to you! > > Thanks again > > Annie > > > > > > > >> To: livercirrhosissupport > >> From: robwalkingeagle@... > >> Date: Fri, 25 Mar 2011 20:33:07 -0700 > >> Subject: Re: intro > >> > >> Dear Annie, Hi my name is Bobby Aragon. I live in Denver Colorado. I am 47, and > >> was a caretaker for my best friend in the whole world, Ardis- whom passed away > >> from alcoholic cirrhosis in 2006. Her death caused me to get sober , and two > >> months after she died, I found out I have cirrhosis just like she did. > >> > >> > >> http://onethreezeroonethree.blogspot.com/ > >> > >> I thought this was impossible at the time, because I only drank beer, but sadly, > >> alcohol is all the same, something I did not know. I thought cirrhosis was what > >> happened to drinkers of hard liquor only. Boy I was wrong. When I tell people > >> how I got sick, they always do a double take, because it is a common > >> misconception that beer is safe. I was a serious beer drinker before my loved > >> one died, but after she died, I fell off the deep end, and went on to a drinking > >> binge of about a month and a half, and could not stop untill I realized I was > >> dying. I was having unstoppable nose bleeds, and many other scary things, but > >> doctors kept telling me that I did not have any kind of liver disease > >> whatsoever. so I kept right on drinking. I lost about a hundred pounds before it > >> was over. I might have not stopped, but I knew in my heart, and when I was > >> having my gallbladder taken out in November that year, the surgeon took a liver > >> biopsy. He told me " well,pal, you definately have cirrhosis. " I asked him how > >> much of the liver was involved, was there just some bad spots, and he said, no > >> it is the entire thing, macronodular cirrhosis, which is big bumps, not the > >> small ones normally associated with drinking. > >> > >> The main thing I would tell you from my own experience is not really advice, but > >> rather just some pointers. > >> First, the only cure for advance cirrhosis once severe complications start is a > >> liver transplant. > >> > >> A good doctor can manage the symptoms of this disease but a lot of people make a > >> big mistake and think a primary care doctor can manage it, but truely a > >> hepatologist is much much better. I am not giving you medical advice, i am not a > >> doctor, I am just saying from experience- liver disease is complicated, and > >> serious. No one would let a primary care doctor take care of heart disease, yet > >> many people I meet tell me they have not seen a hepatologist, for one reason or > >> another, and I feel it is a mistake. > >> > >> Even if a person is not interested in a liver transplant, a good hepatologist > >> will be much much more capable of making the person comfortable, and tracking > >> the MELD score, thereby facilitating when hospice is needed and so on. My loved > >> one Ardis was first seen at the teaching hospital here in Denver, and that was > >> fine for her, but when she gave control of her care to me via power of attorney, > >> I took her to the university and get her in to see the transplant team, and even > >> though she did not get a transplant, when she was admitted to the hospital, she > >> was on the transplant floor. They treat you totally different up on the > >> transplant floor. I cannot put it in to words, but let's jkust say iot is much > >> much nicer, and better, and competant there. > >> > >> My hepatologist has told me to stay away from salty food, and try to keep my > >> sodium below 2000 Milligrams a day, which everyone is suoppoed to do anyway. He > >> has me on a heart healthy diet, avoiding too much fat and sugar, and especially > >> protien. I used to be a moderate to big meat eater, but now meat is nothing more > >> than a garnish. If I do eat over two ounces of meat, I will develop high > >> ammonia, and it causes fights with my wife, and confusion,and sleeplessness, > >> halucinations, and a really bad taste in my mouth. My favorite food is nachos. > >> Salt free chips, salt free beans, shredded cheese, a few jalapenos, chopped > >> onions, chopped tomatoes, taco sauce, and a sprinklle of hamburger, plain. We > >> weigh all the ingerdiants so I cvan keep to my salt restriction. I do not eat > >> salt for breakfast most days, so it is not a prtoblem at all. > >> > >> Thanks for listening to me ramble, and thanks for joining our group(family) > >> Love, Bobby-moderator > >> > >> > >> > >> > >> > >> > >> > >> ________________________________ > >> > >> To: liver cirrhosis support <livercirrhosissupport > > >> Sent: Sat, March 26, 2011 1:43:23 AM > >> Subject: intro > >> > >> > >> > >> > >> My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had been > >> diagnosed with cirrhosis Just about a year ago. > >> I have had several tests done,,they did a liver biopsy in February. I don't > >> know a lot about this if there are any safe products to take to help > >> I an scared and confused. > >> they did the biopsy thru my jugular vein...no disease (cancer or such).. > >> I guess I am trying to find out from others who may have had this longer than I > >> and any tips you may have. > >> More about me I have been married for almost 52 years ,11 grand kids and 6 great > >> grand kids,I live in the thumb area of Michigan. > >> I guess that's it for now. > >> > >> Annie > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2011 Report Share Posted March 26, 2011 Hi Annie and Lorraine, I also have ESLD. Mine is cause from two defective genes that causes too much iron in the liver. It is called hemochromatosis. I am tired all of the time. I am 61 and have been on the transplant list for nearly three years. Welcome to this wonderful group.......Lyncia ________________________________ To: liver cirrhosis support <livercirrhosissupport > Sent: Sat, March 26, 2011 10:25:34 AM Subject: RE: intro  welcome to you too :-) I will pass on more info as I find out Annie > To: livercirrhosissupport > From: didjeat72@... > Date: Sat, 26 Mar 2011 08:23:16 -0700 > Subject: RE: intro > > Hi Annie... when you find out more stuff, let me know too. I was told in the >fall of 2010 that I had this disease. Had the usual tests, liver biopsy, bone >marrow, the wonderful oscopies and such and poof, nobody says much else except I >have nonalcoholic cirrhosis of the liver. I get very tired but manage to do >stuff. I keep reminding myself of something I heard a while back. I am only as >sick, tired or depressed as I decide to be. Take care. I am glad I found this >group. I am fairly new here as well. Lorraine > > > > > > Subject: RE: intro > To: " liver cirrhosis support " <livercirrhosissupport > > Date: Saturday, March 26, 2011, 1:46 AM > > > > > > > > OH and 4 kids LOL > > Annie > > > To: livercirrhosissupport > > From: annabelle56@... > > Date: Fri, 25 Mar 2011 19:43:23 -0600 > > Subject: intro > > > > > > > > My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had >been diagnosed with cirrhosis Just about a year ago. > > I have had several tests done,,they did a liver biopsy in February. I don't >know a lot about this if there are any safe products to take to help > > I an scared and confused. > > they did the biopsy thru my jugular vein...no disease (cancer or such).. > > I guess I am trying to find out from others who may have had this longer than >I and any tips you may have. > > More about me I have been married for almost 52 years ,11 grand kids and 6 >great grand kids,I live in the thumb area of Michigan. > > I guess that's it for now. > > > > Annie > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2011 Report Share Posted March 26, 2011 Thank you I guess I will have to consider a transplant soon,,I will talk to my doctor the 20 of April Annie > To: livercirrhosissupport > From: lmlangdon@... > Date: Sat, 26 Mar 2011 08:37:49 -0700 > Subject: Re: intro > > Hi Annie and Lorraine, > > I also have ESLD. Mine is cause from two defective genes that causes too much > iron in the liver. It is called hemochromatosis. I am tired all of the time. > I am 61 and have been on the transplant list for nearly three years. > > Welcome to this wonderful group.......Lyncia > > > > > ________________________________ > > To: liver cirrhosis support <livercirrhosissupport > > Sent: Sat, March 26, 2011 10:25:34 AM > Subject: RE: intro > > > > > welcome to you too :-) > I will pass on more info as I find out > Annie > > > To: livercirrhosissupport > > From: didjeat72@... > > Date: Sat, 26 Mar 2011 08:23:16 -0700 > > Subject: RE: intro > > > > Hi Annie... when you find out more stuff, let me know too. I was told in the > >fall of 2010 that I had this disease. Had the usual tests, liver biopsy, bone > >marrow, the wonderful oscopies and such and poof, nobody says much else except I > >have nonalcoholic cirrhosis of the liver. I get very tired but manage to do > >stuff. I keep reminding myself of something I heard a while back. I am only as > >sick, tired or depressed as I decide to be. Take care. I am glad I found this > >group. I am fairly new here as well. Lorraine > > > > > > > > > > > > Subject: RE: intro > > To: " liver cirrhosis support " <livercirrhosissupport > > > Date: Saturday, March 26, 2011, 1:46 AM > > > > > > > > > > > > > > > > OH and 4 kids LOL > > > > Annie > > > > > To: livercirrhosissupport > > > From: annabelle56@... > > > Date: Fri, 25 Mar 2011 19:43:23 -0600 > > > Subject: intro > > > > > > > > > > > > My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had > >been diagnosed with cirrhosis Just about a year ago. > > > I have had several tests done,,they did a liver biopsy in February. I don't > >know a lot about this if there are any safe products to take to help > > > I an scared and confused. > > > they did the biopsy thru my jugular vein...no disease (cancer or such).. > > > I guess I am trying to find out from others who may have had this longer than > >I and any tips you may have. > > > More about me I have been married for almost 52 years ,11 grand kids and 6 > >great grand kids,I live in the thumb area of Michigan. > > > I guess that's it for now. > > > > > > Annie > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2011 Report Share Posted March 26, 2011 Hi Lorraine: Nice to hear from you. My mother's name was Lorraine. I can understand what you are saying about how you feel about the stigma of cirrhosis. One of the times my husband was in the hospital I told the dr that saw him that he had non-alcoholic cirrhosis. My husband looked at me and said thank you, as he too never drank. My husband had his liver transplant 10 months ago today and is doing well. Although he still tells me he is cold all the time. Sure wish I could figure out what to do to make him warm. Looking forward to warm weather and hoping that will help. I also understand how you feel about feeling all alone and am happy to hear of your faith in God. Never never give up. God is always with you no matter how bad you feel. When my husband was diagnosed with liver tumors I too felt all alone. My pastor told me that I was never alone, that God does not leave you in times of trouble. He also told me that when I am scared I need to tell my husband that, and the same goes for him. When he is scared he needs to share his feelings with me. That's why God provides friends and loved ones for us, to share our burdens when we feel alone. I am hoping you have friends and loved ones you can count on, and of course, you can always talk to any one of us on this group, me included. Here's a hug from me. :   ((((Lorraine))))  Wish it was a real hug but my arms can't physically reach from here in PA. Remember, God's arms can reach you wherever you are and He holds you in the palm of His hand. Hoping you have a good day today. Keep posting. We love hearing from you. Love, Jackie > > > Thank you so much Bobby  it was very informative ..I will tell you that I have never drank,mine is from meds > and in 1978 I had the old style intestinal bypass to lose weight ( I lost weight but it don't work forever I am heavy now),,,they tell me my liver is in stress because its not getting the nutrients it needed from my surgery. > They cut off 18 feet of my intestines reattached it  to my stomach,,,I think thats right...I will try and follow the tips on dieting > I found I also love mexican food it tastes the best to me...I have lost a small amount of weight from this illness  ....I guess you can say I am a beginner > I do get tired ,no interest in much except church.. > You are a real blessing to me > I am so sorry for the loss of your friend ,,that is hard!!  hugs to you! > Thanks again > Annie > > > >> To: livercirrhosissupport >> From: robwalkingeagle@... >> Date: Fri, 25 Mar 2011 20:33:07 -0700 >> Subject: Re: intro >> >> Dear Annie, Hi my name is Bobby Aragon. I live in Denver Colorado. I am 47, and >> was a caretaker for my best friend in the whole world, Ardis- whom passed away >> from alcoholic cirrhosis in 2006. Her death caused me to get sober , and two >> months after she died, I found out I  have cirrhosis just like she did. >> >> >> http://onethreezeroonethree.blogspot.com/ >> >> I thought this was impossible at the time, because I only drank beer, but sadly, >> alcohol is all the same, something I did not know. I thought cirrhosis was what >> happened to drinkers of hard liquor only. Boy I was wrong. When I tell people >> how I got sick, they always do a double take, because it is a common >> misconception that beer is safe. I was a serious beer drinker before my loved >> one died, but after she died, I fell off the deep end, and went on to a drinking >> binge of about a month and a half, and could not stop untill I realized I was >> dying. I was having unstoppable nose bleeds, and many other scary things, but >> doctors kept telling me that I did not have any kind of liver disease >> whatsoever. so I kept right on drinking. I lost about a hundred pounds before it >> was over. I might have not stopped, but I knew in my heart, and when I was >> having my gallbladder taken out in November that year, the surgeon took a liver >> biopsy. He told me " well,pal, you definately have cirrhosis. " I asked him how >> much of the liver was involved, was there just some bad spots, and he said, no >> it is the entire thing, macronodular cirrhosis, which is big bumps, not the >> small ones normally associated with drinking. >> >> The main thing I would tell you from my own experience is not really advice, but >> rather just some pointers. >>  First, the only cure for advance cirrhosis once severe complications start is a >> liver transplant. >> >> A good doctor can manage the symptoms of this disease but a lot of people make a >> big mistake and think a primary care doctor can manage it, but truely a >> hepatologist is much much better. I am not giving you medical advice, i am not a >> doctor, I am just saying from experience- liver disease is complicated, and >> serious. No one would let a primary care doctor take care of heart disease, yet >> many people I meet tell me they have not seen a hepatologist, for one reason or >> another, and I feel it is a mistake. >> >> Even if a person is not interested in a liver transplant, a good hepatologist >> will be much much more capable of making the person comfortable, and tracking >> the MELD score, thereby facilitating when hospice is needed and so on. My loved >> one Ardis was first seen at the teaching hospital here in Denver, and that was >> fine for her, but when she gave control of her care to me via power of attorney, >> I took her to the university and get her in to see the transplant team, and even >> though she did not get a transplant, when she was admitted to the hospital, she >> was on the transplant floor. They treat you totally different up on the >> transplant floor. I cannot put it in to words, but let's jkust say iot is much >> much nicer, and better, and competant there. >> >> My hepatologist has told me to stay away from salty food, and try to keep my >> sodium below 2000 Milligrams a day, which everyone is suoppoed to do anyway. He >> has me on a heart healthy diet, avoiding too much fat and sugar, and especially >> protien. I used to be a moderate to big meat eater, but now meat is nothing more >> than a garnish. If I do eat over two ounces of meat, I will develop high >> ammonia, and it causes fights with my wife, and confusion,and sleeplessness, >> halucinations, and a really bad taste in my mouth. My favorite food is nachos. >> Salt free chips, salt free beans, shredded cheese, a few jalapenos, chopped >> onions, chopped tomatoes, taco sauce, and a sprinklle of hamburger, plain. We >> weigh all the ingerdiants so I cvan keep to my salt restriction. I do not eat >> salt for breakfast most days, so it is not a prtoblem at all. >> >> Thanks for listening to me ramble, and thanks for joining our group(family) >> Love, Bobby-moderator >> >> >> >> >> >> >> >> ________________________________ >> >> To: liver cirrhosis support <livercirrhosissupport > >> Sent: Sat, March 26, 2011 1:43:23 AM >> Subject: intro >> >> >> >> >> My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had been >> diagnosed with cirrhosis Just about a year ago. >> I have  had several tests done,,they did a liver biopsy  in February. I don't >> know a lot about this if there are any safe products to take to help >> I an scared and confused. >> they did the biopsy thru my jugular vein...no disease (cancer or such).. >> I guess I am trying to find out from others who may have had this longer than I >> and any tips you may have. >> More about me I have been married for almost 52 years ,11 grand kids and 6 great >> grand kids,I live in the thumb area of Michigan. >> I guess that's it for now. >> >> Annie >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2011 Report Share Posted March 26, 2011 Hi Annie: I'm Jackie. My husband had non alcoholic cirrhosis and had a liver transplant 10 months ago today. They had no idea what caused his cirrhosis either but he also had fatty liver from diabetes. One of his drs asked him if he had ever been overseas and he had. When he was in the air force in the 1960's he was stationed in the ines for 14 months. He was a chaplain's assistant and used to take a projector and film to the jungles and show Graham movies to the natives. is and has always been a mosquito magnet. We are wondering if he may have gotten bitten by an insect and the effects lay dormant for years before liver disease reared it's ugly head. That's a possibility. You and I also have alot in common. We also have twins, two sons who are 29 years old and a real blessing to us. Have you been evaluated for a liver transplant? Please keep posting. You will make lots of new friends on this group who really care and will be of much help. By the way, I am writing a book about our experience with liver disease. It will be called The Mustard Seed. You know what the Bible says: If you have faith as small as a mustard seed you can even move mountains. We did. Love, Jackie > > > > > > Thank you so much Bobby it was very informative ..I will tell you that I have never drank,mine is from meds > > and in 1978 I had the old style intestinal bypass to lose weight ( I lost weight but it don't work forever I am heavy now),,,they tell me my liver is in stress because its not getting the nutrients it needed from my surgery. > > They cut off 18 feet of my intestines reattached it to my stomach,,,I think thats right...I will try and follow the tips on dieting > > I found I also love mexican food it tastes the best to me...I have lost a small amount of weight from this illness ....I guess you can say I am a beginner > > I do get tired ,no interest in much except church.. > > You are a real blessing to me > > I am so sorry for the loss of your friend ,,that is hard!! hugs to you! > > Thanks again > > Annie > > > > > > > >> To: livercirrhosissupport > >> From: robwalkingeagle@... > >> Date: Fri, 25 Mar 2011 20:33:07 -0700 > >> Subject: Re: intro > >> > >> Dear Annie, Hi my name is Bobby Aragon. I live in Denver Colorado. I am 47, and > >> was a caretaker for my best friend in the whole world, Ardis- whom passed away > >> from alcoholic cirrhosis in 2006. Her death caused me to get sober , and two > >> months after she died, I found out I have cirrhosis just like she did. > >> > >> > >> http://onethreezeroonethree.blogspot.com/ > >> > >> I thought this was impossible at the time, because I only drank beer, but sadly, > >> alcohol is all the same, something I did not know. I thought cirrhosis was what > >> happened to drinkers of hard liquor only. Boy I was wrong. When I tell people > >> how I got sick, they always do a double take, because it is a common > >> misconception that beer is safe. I was a serious beer drinker before my loved > >> one died, but after she died, I fell off the deep end, and went on to a drinking > >> binge of about a month and a half, and could not stop untill I realized I was > >> dying. I was having unstoppable nose bleeds, and many other scary things, but > >> doctors kept telling me that I did not have any kind of liver disease > >> whatsoever. so I kept right on drinking. I lost about a hundred pounds before it > >> was over. I might have not stopped, but I knew in my heart, and when I was > >> having my gallbladder taken out in November that year, the surgeon took a liver > >> biopsy. He told me " well,pal, you definately have cirrhosis. " I asked him how > >> much of the liver was involved, was there just some bad spots, and he said, no > >> it is the entire thing, macronodular cirrhosis, which is big bumps, not the > >> small ones normally associated with drinking. > >> > >> The main thing I would tell you from my own experience is not really advice, but > >> rather just some pointers. > >> First, the only cure for advance cirrhosis once severe complications start is a > >> liver transplant. > >> > >> A good doctor can manage the symptoms of this disease but a lot of people make a > >> big mistake and think a primary care doctor can manage it, but truely a > >> hepatologist is much much better. I am not giving you medical advice, i am not a > >> doctor, I am just saying from experience- liver disease is complicated, and > >> serious. No one would let a primary care doctor take care of heart disease, yet > >> many people I meet tell me they have not seen a hepatologist, for one reason or > >> another, and I feel it is a mistake. > >> > >> Even if a person is not interested in a liver transplant, a good hepatologist > >> will be much much more capable of making the person comfortable, and tracking > >> the MELD score, thereby facilitating when hospice is needed and so on. My loved > >> one Ardis was first seen at the teaching hospital here in Denver, and that was > >> fine for her, but when she gave control of her care to me via power of attorney, > >> I took her to the university and get her in to see the transplant team, and even > >> though she did not get a transplant, when she was admitted to the hospital, she > >> was on the transplant floor. They treat you totally different up on the > >> transplant floor. I cannot put it in to words, but let's jkust say iot is much > >> much nicer, and better, and competant there. > >> > >> My hepatologist has told me to stay away from salty food, and try to keep my > >> sodium below 2000 Milligrams a day, which everyone is suoppoed to do anyway. He > >> has me on a heart healthy diet, avoiding too much fat and sugar, and especially > >> protien. I used to be a moderate to big meat eater, but now meat is nothing more > >> than a garnish. If I do eat over two ounces of meat, I will develop high > >> ammonia, and it causes fights with my wife, and confusion,and sleeplessness, > >> halucinations, and a really bad taste in my mouth. My favorite food is nachos. > >> Salt free chips, salt free beans, shredded cheese, a few jalapenos, chopped > >> onions, chopped tomatoes, taco sauce, and a sprinklle of hamburger, plain. We > >> weigh all the ingerdiants so I cvan keep to my salt restriction. I do not eat > >> salt for breakfast most days, so it is not a prtoblem at all. > >> > >> Thanks for listening to me ramble, and thanks for joining our group(family) > >> Love, Bobby-moderator > >> > >> > >> > >> > >> > >> > >> > >> ________________________________ > >> > >> To: liver cirrhosis support <livercirrhosissupport > > >> Sent: Sat, March 26, 2011 1:43:23 AM > >> Subject: intro > >> > >> > >> > >> > >> My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had been > >> diagnosed with cirrhosis Just about a year ago. > >> I have had several tests done,,they did a liver biopsy in February. I don't > >> know a lot about this if there are any safe products to take to help > >> I an scared and confused. > >> they did the biopsy thru my jugular vein...no disease (cancer or such).. > >> I guess I am trying to find out from others who may have had this longer than I > >> and any tips you may have. > >> More about me I have been married for almost 52 years ,11 grand kids and 6 great > >> grand kids,I live in the thumb area of Michigan. > >> I guess that's it for now. > >> > >> Annie > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2011 Report Share Posted March 26, 2011 Your post is very encouraging to me thanks so much I should clear it up, the twin girls were my grand babies :-) I have never been out of the country except Canada' 'I will ask my doctor about a liver transplant in April when I see him again. Sometimes I get so depressed I know I am 67 but I have so many grand kids I want to see,I want to live! I love all my family they are very important to me! Annie > To: livercirrhosissupport > From: jckellermann@... > Date: Sat, 26 Mar 2011 10:08:12 -0700 > Subject: RE: intro > > Hi Annie: I'm Jackie. My husband had non alcoholic cirrhosis and had a liver transplant 10 months ago today. They had no idea what caused his cirrhosis either but he also had fatty liver from diabetes. One of his drs asked him if he had ever been overseas and he had. When he was in the air force in the 1960's he was stationed in the ines for 14 months. He was a chaplain's assistant and used to take a projector and film to the jungles and show Graham movies to the natives. is and has always been a mosquito magnet. We are wondering if he may have gotten bitten by an insect and the effects lay dormant for years before liver disease reared it's ugly head. That's a possibility. You and I also have alot in common. We also have twins, two sons who are 29 years old and a real blessing to us. Have you been evaluated for a liver transplant? Please keep posting. You will make lots of new friends on this group who really > care and will be of much help. By the way, I am writing a book about our experience with liver disease. It will be called The Mustard Seed. You know what the Bible says: If you have faith as small as a mustard seed you can even move mountains. We did. Love, Jackie > > > > > > > > > > > Thank you so much Bobby it was very informative ..I will tell you that I have never drank,mine is from meds > > > and in 1978 I had the old style intestinal bypass to lose weight ( I lost weight but it don't work forever I am heavy now),,,they tell me my liver is in stress because its not getting the nutrients it needed from my surgery. > > > They cut off 18 feet of my intestines reattached it to my stomach,,,I think thats right...I will try and follow the tips on dieting > > > I found I also love mexican food it tastes the best to me...I have lost a small amount of weight from this illness ....I guess you can say I am a beginner > > > I do get tired ,no interest in much except church.. > > > You are a real blessing to me > > > I am so sorry for the loss of your friend ,,that is hard!! hugs to you! > > > Thanks again > > > Annie > > > > > > > > > > > >> To: livercirrhosissupport > > >> From: robwalkingeagle@... > > >> Date: Fri, 25 Mar 2011 20:33:07 -0700 > > >> Subject: Re: intro > > >> > > >> Dear Annie, Hi my name is Bobby Aragon. I live in Denver Colorado. I am 47, and > > >> was a caretaker for my best friend in the whole world, Ardis- whom passed away > > >> from alcoholic cirrhosis in 2006. Her death caused me to get sober , and two > > >> months after she died, I found out I have cirrhosis just like she did. > > >> > > >> > > >> http://onethreezeroonethree.blogspot.com/ > > >> > > >> I thought this was impossible at the time, because I only drank beer, but sadly, > > >> alcohol is all the same, something I did not know. I thought cirrhosis was what > > >> happened to drinkers of hard liquor only. Boy I was wrong. When I tell people > > >> how I got sick, they always do a double take, because it is a common > > >> misconception that beer is safe. I was a serious beer drinker before my loved > > >> one died, but after she died, I fell off the deep end, and went on to a drinking > > >> binge of about a month and a half, and could not stop untill I realized I was > > >> dying. I was having unstoppable nose bleeds, and many other scary things, but > > >> doctors kept telling me that I did not have any kind of liver disease > > >> whatsoever. so I kept right on drinking. I lost about a hundred pounds before it > > >> was over. I might have not stopped, but I knew in my heart, and when I was > > >> having my gallbladder taken out in November that year, the surgeon took a liver > > >> biopsy. He told me " well,pal, you definately have cirrhosis. " I asked him how > > >> much of the liver was involved, was there just some bad spots, and he said, no > > >> it is the entire thing, macronodular cirrhosis, which is big bumps, not the > > >> small ones normally associated with drinking. > > >> > > >> The main thing I would tell you from my own experience is not really advice, but > > >> rather just some pointers. > > >> First, the only cure for advance cirrhosis once severe complications start is a > > >> liver transplant. > > >> > > >> A good doctor can manage the symptoms of this disease but a lot of people make a > > >> big mistake and think a primary care doctor can manage it, but truely a > > >> hepatologist is much much better. I am not giving you medical advice, i am not a > > >> doctor, I am just saying from experience- liver disease is complicated, and > > >> serious. No one would let a primary care doctor take care of heart disease, yet > > >> many people I meet tell me they have not seen a hepatologist, for one reason or > > >> another, and I feel it is a mistake. > > >> > > >> Even if a person is not interested in a liver transplant, a good hepatologist > > >> will be much much more capable of making the person comfortable, and tracking > > >> the MELD score, thereby facilitating when hospice is needed and so on. My loved > > >> one Ardis was first seen at the teaching hospital here in Denver, and that was > > >> fine for her, but when she gave control of her care to me via power of attorney, > > >> I took her to the university and get her in to see the transplant team, and even > > >> though she did not get a transplant, when she was admitted to the hospital, she > > >> was on the transplant floor. They treat you totally different up on the > > >> transplant floor. I cannot put it in to words, but let's jkust say iot is much > > >> much nicer, and better, and competant there. > > >> > > >> My hepatologist has told me to stay away from salty food, and try to keep my > > >> sodium below 2000 Milligrams a day, which everyone is suoppoed to do anyway. He > > >> has me on a heart healthy diet, avoiding too much fat and sugar, and especially > > >> protien. I used to be a moderate to big meat eater, but now meat is nothing more > > >> than a garnish. If I do eat over two ounces of meat, I will develop high > > >> ammonia, and it causes fights with my wife, and confusion,and sleeplessness, > > >> halucinations, and a really bad taste in my mouth. My favorite food is nachos. > > >> Salt free chips, salt free beans, shredded cheese, a few jalapenos, chopped > > >> onions, chopped tomatoes, taco sauce, and a sprinklle of hamburger, plain. We > > >> weigh all the ingerdiants so I cvan keep to my salt restriction. I do not eat > > >> salt for breakfast most days, so it is not a prtoblem at all. > > >> > > >> Thanks for listening to me ramble, and thanks for joining our group(family) > > >> Love, Bobby-moderator > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> ________________________________ > > >> > > >> To: liver cirrhosis support <livercirrhosissupport > > > >> Sent: Sat, March 26, 2011 1:43:23 AM > > >> Subject: intro > > >> > > >> > > >> > > >> > > >> My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had been > > >> diagnosed with cirrhosis Just about a year ago. > > >> I have had several tests done,,they did a liver biopsy in February. I don't > > >> know a lot about this if there are any safe products to take to help > > >> I an scared and confused. > > >> they did the biopsy thru my jugular vein...no disease (cancer or such).. > > >> I guess I am trying to find out from others who may have had this longer than I > > >> and any tips you may have. > > >> More about me I have been married for almost 52 years ,11 grand kids and 6 great > > >> grand kids,I live in the thumb area of Michigan. > > >> I guess that's it for now. > > >> > > >> Annie > > >> > > >> > > >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2011 Report Share Posted March 26, 2011 Dear Lorraine, I understand what you are saying. I saw a prayer in the doctor's office last week, ( I am being seen by an oncologist for treatment of a tumor in/on my 7th rib on the left side) and the prayer said something like this " I pray that I might do something today to be positive and make this day worthwhile, to be all that I can, for the price of this day is 24 precious hours of my life... " or something like that. I know that the end is nearer for me than most of my friends and family, but whenever that might be, they all won't be far behind. If I start to think like you were, when you said that you were a " dead woman walking " , well, I will have a panic attack. I try to stay grounded right in the here and now. In AA we have a blunt saying that if you step with one foot in tomorrow, and one foot in yesterday, you are probably pissing on today " . I know it is a rude saying, and you are a lady, so I apologize, but it is true. Big hug. Love, Bobby ________________________________ To: livercirrhosissupport Sent: Sat, March 26, 2011 9:18:15 AM Subject: Re: intro Good morning folks. The posts today were so so helpful to me. I am not a drinker either and to hear so many others say the same sure lifted my spirits. The first thing everyone thinks is that you were an alcoholic. What a surprise when I heard I had liver cirrhosis, I guess it is end stage. It was never really explained thoroughly. I too had liver disease in my family (mother, also not a drinker), Go figure!! I am in a quandry though. I have some sort of blood disorder where I need protein. Now I read all over the place that we need low protein, low salt diets. So, darned if you don't and darned if you do!! The fatigue is amazing though. I get so sleepy and have no energy or urge to do stuff. Hopefully when summer gets here it will be better, I am soo cold all the time. The hematologist says he thinks the blood disorder is because of the liver yet previously they all said no way. I see him as well as the GI doctor (every six months) and now once a year I will see a hepatologist( I guess) at the Lahey Clinic in Boston. All she did was give me Nadolol to keep my blood pressure down because I have the gastric varices and the GI guy gave me omeprazole. That's about all the treatment I am getting. I am kinda lost as to what's going on. Is it my age (73) and they figure I will not last much longer anyhow. It is kind of depressing. The other night I felt like dead woman walking. When I get like that though the Lord grabs ahold of me and says hang on child, I am walking with you and we will make it together. PS my mother passed with the same symptoms listed on the info page and I am happy to say it was very peaceful. > > > Thank you so much Bobby it was very informative ..I will tell you that I have >never drank,mine is from meds > and in 1978 I had the old style intestinal bypass to lose weight ( I lost >weight but it don't work forever I am heavy now),,,they tell me my liver is in >stress because its not getting the nutrients it needed from my surgery. > They cut off 18 feet of my intestines reattached it to my stomach,,,I think >thats right...I will try and follow the tips on dieting > I found I also love mexican food it tastes the best to me...I have lost a small >amount of weight from this illness ....I guess you can say I am a beginner > I do get tired ,no interest in much except church.. > You are a real blessing to me > I am so sorry for the loss of your friend ,,that is hard!! hugs to you! > Thanks again > Annie > > > >> To: livercirrhosissupport >> From: robwalkingeagle@... >> Date: Fri, 25 Mar 2011 20:33:07 -0700 >> Subject: Re: intro >> >> Dear Annie, Hi my name is Bobby Aragon. I live in Denver Colorado. I am 47, >and >> was a caretaker for my best friend in the whole world, Ardis- whom passed away >> from alcoholic cirrhosis in 2006. Her death caused me to get sober , and two >> months after she died, I found out I have cirrhosis just like she did. >> >> >> http://onethreezeroonethree.blogspot.com/ >> >> I thought this was impossible at the time, because I only drank beer, but >>sadly, >> alcohol is all the same, something I did not know. I thought cirrhosis was >what >> happened to drinkers of hard liquor only. Boy I was wrong. When I tell people >> how I got sick, they always do a double take, because it is a common >> misconception that beer is safe. I was a serious beer drinker before my loved >> one died, but after she died, I fell off the deep end, and went on to a >>drinking >> binge of about a month and a half, and could not stop untill I realized I was >> dying. I was having unstoppable nose bleeds, and many other scary things, but >> doctors kept telling me that I did not have any kind of liver disease >> whatsoever. so I kept right on drinking. I lost about a hundred pounds before >>it >> was over. I might have not stopped, but I knew in my heart, and when I was >> having my gallbladder taken out in November that year, the surgeon took a >liver >> biopsy. He told me " well,pal, you definately have cirrhosis. " I asked him how >> much of the liver was involved, was there just some bad spots, and he said, no >> it is the entire thing, macronodular cirrhosis, which is big bumps, not the >> small ones normally associated with drinking. >> >> The main thing I would tell you from my own experience is not really advice, >>but >> rather just some pointers. >> First, the only cure for advance cirrhosis once severe complications start is >>a >> liver transplant. >> >> A good doctor can manage the symptoms of this disease but a lot of people make >>a >> big mistake and think a primary care doctor can manage it, but truely a >> hepatologist is much much better. I am not giving you medical advice, i am not >>a >> doctor, I am just saying from experience- liver disease is complicated, and >> serious. No one would let a primary care doctor take care of heart disease, >yet >> many people I meet tell me they have not seen a hepatologist, for one reason >or >> another, and I feel it is a mistake. >> >> Even if a person is not interested in a liver transplant, a good hepatologist >> will be much much more capable of making the person comfortable, and tracking >> the MELD score, thereby facilitating when hospice is needed and so on. My >loved >> one Ardis was first seen at the teaching hospital here in Denver, and that was >> fine for her, but when she gave control of her care to me via power of >>attorney, >> I took her to the university and get her in to see the transplant team, and >>even >> though she did not get a transplant, when she was admitted to the hospital, >she >> was on the transplant floor. They treat you totally different up on the >> transplant floor. I cannot put it in to words, but let's jkust say iot is much >> much nicer, and better, and competant there. >> >> My hepatologist has told me to stay away from salty food, and try to keep my >> sodium below 2000 Milligrams a day, which everyone is suoppoed to do anyway. >He >> has me on a heart healthy diet, avoiding too much fat and sugar, and >especially >> protien. I used to be a moderate to big meat eater, but now meat is nothing >>more >> than a garnish. If I do eat over two ounces of meat, I will develop high >> ammonia, and it causes fights with my wife, and confusion,and sleeplessness, >> halucinations, and a really bad taste in my mouth. My favorite food is nachos. >> Salt free chips, salt free beans, shredded cheese, a few jalapenos, chopped >> onions, chopped tomatoes, taco sauce, and a sprinklle of hamburger, plain. We >> weigh all the ingerdiants so I cvan keep to my salt restriction. I do not eat >> salt for breakfast most days, so it is not a prtoblem at all. >> >> Thanks for listening to me ramble, and thanks for joining our group(family) >> Love, Bobby-moderator >> >> >> >> >> >> >> >> ________________________________ >> >> To: liver cirrhosis support <livercirrhosissupport > >> Sent: Sat, March 26, 2011 1:43:23 AM >> Subject: intro >> >> >> >> >> My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had >>been >> diagnosed with cirrhosis Just about a year ago. >> I have had several tests done,,they did a liver biopsy in February. I don't >> know a lot about this if there are any safe products to take to help >> I an scared and confused. >> they did the biopsy thru my jugular vein...no disease (cancer or such).. >> I guess I am trying to find out from others who may have had this longer than >I >> and any tips you may have. >> More about me I have been married for almost 52 years ,11 grand kids and 6 >>great >> grand kids,I live in the thumb area of Michigan. >> I guess that's it for now. >> >> Annie >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2011 Report Share Posted March 26, 2011 Almost everybody jumped to the conclusion that I was an alcoholic when I told them I had cirrhosis too. Except my step daughter, she said " Jan I have never seen you take a drink " The idea is still out there that if you have cirrhosis, you must be an alcoholic. In fact, alcohol isn't even the first cause of cirrhosis anymore. Hepatitis has overtaken it. And some people who have it, never used drugs, didn't share dirty needles. At first, I made sure everybody knew I had non alcoholic of unknown origin cirrhosis when I first brought it up. But after years of being on here with some who probably did get cirrhosis because of drinking, I have found that they are very nice people, don't deserve cirrhosis any more than the rest of us who didn't drink. So, I try not to designate that mine is non alcoholic any more. Of course it still comes up in conversations and then I will say that mine is of unknown origin, and tell them the possibilities I know of as a cause for me. And also, I believe that some people who are alcoholics and get cirrhosis might have gotten it if they never took a drink in their life. Not every alcoholic gets cirrhosis, so why does every alcoholic who does have to have gotten it from the drinking. They could have been genetically inclined toward liver problems just as my family is and as someone else mentioned their family. My grandfather was diagnosed with pernicious anemia in the 1930s. That was given as his cause of death, but the symptoms to cirrhosis are very similar. Also, one of his sons, died of hemochromatosis which eventually turned into cancer. His daughter is on hemo dialysis now to cut down the iron in her blood.Her doctors think our common grandfather died of hemochromatosis. We are double cousins as our mothers are sisters and and fathers were brothers. Guess it doesn't matter which he died of, just that it is in the family, I have been told I should be checked for hemochromotosis because it is possible to have both cirrhosis and hemochromotosis. I have never asked, but since I am very anemic, non iron related as far as we know, I am sure some doctor has ruled that out. Annie, I think it was you who was talking about the treatment. There really isn't much treatment for the cirrhosis. There are some things you can do to cut down on some symptoms, and I think they have been mentioned here, basically, I cut down on meat. keep my bp as low as can and still be normal, and watch for some of the complications. The one I have which sometimes drives me crazy and keeps me from sleeping frequently is itching. I had the itching before my diagnosis. Before I cut down on meat, I did have a couple of instances of hepatic enchephalopathy, but since they were short term, they were sort of funny. Well, wrote another chapter and have to check the wash machine. Hope i have said something helpful to someone. Jan > Dear Lorraine, I understand what you are saying. I saw a prayer in the doctor's > office last week, ( I am being seen by an oncologist for treatment of a tumor > in/on my 7th rib on the left side) and the prayer said something like this " I > pray that I might do something today to be positive and make this day > worthwhile, to be all that I can, for the price of this day is 24 precious hours > of my life... " or something like that. I know that the end is nearer for me than > most of my friends and family, but whenever that might be, they all won't be far > behind. If I start to think like you were, when  you said that you were a " dead > woman walking " , well, I will have a panic attack. I try to stay grounded right > in the here and now. In AA we have a blunt saying that if you step with one foot > in tomorrow, and one foot in yesterday, you are probably pissing on today " . I > know it is a rude saying, and you are a lady, so I apologize, but it is true. > Big hug. Love, Bobby > > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Sat, March 26, 2011 9:18:15 AM > Subject: Re: intro > > > Good morning folks. The posts today were so so helpful to me. I am not a drinker > either and to hear so many others say the same sure lifted my spirits. The first > thing everyone thinks is that you were an alcoholic. What a surprise when I > heard I had liver cirrhosis, I guess it is end stage. It was never really > explained thoroughly. I too had liver disease in my family (mother, also not a > drinker), Go figure!! I am in a quandry though. I have some sort of blood > disorder where I need protein. Now I read all over the place that we need low > protein, low salt diets. So, darned if you don't and darned if you do!!  The > fatigue is amazing though. I get so sleepy and have no energy or urge to do > stuff. Hopefully when summer gets here it will be better, I am soo cold all the > time. The hematologist says he thinks the blood disorder is because of the liver > yet previously they all said no way. I see him as well as the GI doctor (every > six months) and now once a > year I will see a hepatologist( I guess) at the Lahey Clinic in Boston. All she > did was give me Nadolol to keep my blood pressure down because I have the > gastric varices and the GI guy gave me omeprazole. That's about all the > treatment I am getting. I am kinda lost as to what's going on. Is it my age (73) > and they figure I will not last much longer anyhow. It is kind of depressing. > The other night I felt like dead woman walking.  When I get like that though the > Lord grabs ahold of me and says hang on child, I am walking with you and we will > make it together.  PS my mother passed with the same symptoms listed on the info > page and I am happy to say it was very peaceful. > > > >> >> >> Thank you so much Bobby  it was very informative ..I will tell you that I have >>never drank,mine is from meds >> and in 1978 I had the old style intestinal bypass to lose weight ( I lost >>weight but it don't work forever I am heavy now),,,they tell me my liver is in >>stress because its not getting the nutrients it needed from my surgery. >> They cut off 18 feet of my intestines reattached it  to my stomach,,,I think >>thats right...I will try and follow the tips on dieting >> I found I also love mexican food it tastes the best to me...I have lost a small >>amount of weight from this illness  ....I guess you can say I am a beginner >> I do get tired ,no interest in much except church.. >> You are a real blessing to me >> I am so sorry for the loss of your friend ,,that is hard!!  hugs to you! >> Thanks again >> Annie >> >> >> >>> To: livercirrhosissupport >>> From: robwalkingeagle@... >>> Date: Fri, 25 Mar 2011 20:33:07 -0700 >>> Subject: Re: intro >>> >>> Dear Annie, Hi my name is Bobby Aragon. I live in Denver Colorado. I am 47, >>and >>> was a caretaker for my best friend in the whole world, Ardis- whom passed > away >>> from alcoholic cirrhosis in 2006. Her death caused me to get sober , and two >>> months after she died, I found out I  have cirrhosis just like she did. >>> >>> >>> http://onethreezeroonethree.blogspot.com/ >>> >>> I thought this was impossible at the time, because I only drank beer, but >>>sadly, >>> alcohol is all the same, something I did not know. I thought cirrhosis was >>what >>> happened to drinkers of hard liquor only. Boy I was wrong. When I tell people >>> how I got sick, they always do a double take, because it is a common >>> misconception that beer is safe. I was a serious beer drinker before my loved >>> one died, but after she died, I fell off the deep end, and went on to a >>>drinking >>> binge of about a month and a half, and could not stop untill I realized I was >>> dying. I was having unstoppable nose bleeds, and many other scary things, but >>> doctors kept telling me that I did not have any kind of liver disease >>> whatsoever. so I kept right on drinking. I lost about a hundred pounds before >>>it >>> was over. I might have not stopped, but I knew in my heart, and when I was >>> having my gallbladder taken out in November that year, the surgeon took a >>liver >>> biopsy. He told me " well,pal, you definately have cirrhosis. " I asked him > how >>> much of the liver was involved, was there just some bad spots, and he said, > no >>> it is the entire thing, macronodular cirrhosis, which is big bumps, not the >>> small ones normally associated with drinking. >>> >>> The main thing I would tell you from my own experience is not really advice, >>>but >>> rather just some pointers. >>>  First, the only cure for advance cirrhosis once severe complications start is >>>a >>> liver transplant. >>> >>> A good doctor can manage the symptoms of this disease but a lot of people make >>>a >>> big mistake and think a primary care doctor can manage it, but truely a >>> hepatologist is much much better. I am not giving you medical advice, i am not >>>a >>> doctor, I am just saying from experience- liver disease is complicated, and >>> serious. No one would let a primary care doctor take care of heart disease, >>yet >>> many people I meet tell me they have not seen a hepatologist, for one reason >>or >>> another, and I feel it is a mistake. >>> >>> Even if a person is not interested in a liver transplant, a good hepatologist >>> will be much much more capable of making the person comfortable, and tracking >>> the MELD score, thereby facilitating when hospice is needed and so on. My >>loved >>> one Ardis was first seen at the teaching hospital here in Denver, and that > was >>> fine for her, but when she gave control of her care to me via power of >>>attorney, >>> I took her to the university and get her in to see the transplant team, and >>>even >>> though she did not get a transplant, when she was admitted to the hospital, >>she >>> was on the transplant floor. They treat you totally different up on the >>> transplant floor. I cannot put it in to words, but let's jkust say iot is > much >>> much nicer, and better, and competant there. >>> >>> My hepatologist has told me to stay away from salty food, and try to keep my >>> sodium below 2000 Milligrams a day, which everyone is suoppoed to do anyway. >>He >>> has me on a heart healthy diet, avoiding too much fat and sugar, and >>especially >>> protien. I used to be a moderate to big meat eater, but now meat is nothing >>>more >>> than a garnish. If I do eat over two ounces of meat, I will develop high >>> ammonia, and it causes fights with my wife, and confusion,and sleeplessness, >>> halucinations, and a really bad taste in my mouth. My favorite food is > nachos. >>> Salt free chips, salt free beans, shredded cheese, a few jalapenos, chopped >>> onions, chopped tomatoes, taco sauce, and a sprinklle of hamburger, plain. We >>> weigh all the ingerdiants so I cvan keep to my salt restriction. I do not eat >>> salt for breakfast most days, so it is not a prtoblem at all. >>> >>> Thanks for listening to me ramble, and thanks for joining our group(family) >>> Love, Bobby-moderator >>> >>> >>> >>> >>> >>> >>> >>> ________________________________ >>> >>> To: liver cirrhosis support <livercirrhosissupport > >>> Sent: Sat, March 26, 2011 1:43:23 AM >>> Subject: intro >>> >>> >>> >>> >>> My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had >>>been >>> diagnosed with cirrhosis Just about a year ago. >>> I have  had several tests done,,they did a liver biopsy  in February. I don't >>> know a lot about this if there are any safe products to take to help >>> I an scared and confused. >>> they did the biopsy thru my jugular vein...no disease (cancer or such).. >>> I guess I am trying to find out from others who may have had this longer than >>I >>> and any tips you may have. >>> More about me I have been married for almost 52 years ,11 grand kids and 6 >>>great >>> grand kids,I live in the thumb area of Michigan. >>> I guess that's it for now. >>> >>> Annie >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2011 Report Share Posted March 27, 2011 Hi Annie, Welcome to the group. My husband has Idiopathic (no known cause) Cirrhosis and had a transplant on 2/25/11. He was already seriously ill from the affects of the liver and now is starting to get better..I know you will find comfort here from those that do understansd. > > > > My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had been diagnosed with cirrhosis Just about a year ago. > I have had several tests done,,they did a liver biopsy in February. I don't know a lot about this if there are any safe products to take to help > I an scared and confused. > they did the biopsy thru my jugular vein...no disease (cancer or such).. > I guess I am trying to find out from others who may have had this longer than I and any tips you may have. > More about me I have been married for almost 52 years ,11 grand kids and 6 great grand kids,I live in the thumb area of Michigan. > I guess that's it for now. > > Annie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2011 Report Share Posted March 27, 2011 Thank you so much.. I am going to ask a personal question men close your eyes lol Is the itching in the vaginal area? I will leave it at that Annie > To: livercirrhosissupport > From: janholman@... > Date: Sat, 26 Mar 2011 22:19:05 -0700 > Subject: Re: intro > > Almost everybody jumped to the conclusion that I was an alcoholic when > I told them I had cirrhosis too. Except my step daughter, she said > " Jan I have never seen you take a drink " The idea is still out there > that if you have cirrhosis, you must be an alcoholic. In fact, > alcohol isn't even the first cause of cirrhosis anymore. Hepatitis > has overtaken it. And some people who have it, never used drugs, > didn't share dirty needles. At first, I made sure everybody knew I > had non alcoholic of unknown origin cirrhosis when I first brought it > up. But after years of being on here with some who probably did get > cirrhosis because of drinking, I have found that they are very nice > people, don't deserve cirrhosis any more than the rest of us who > didn't drink. So, I try not to designate that mine is non alcoholic > any more. Of course it still comes up in conversations and then I > will say that mine is of unknown origin, and tell them the > possibilities I know of as a cause for me. And also, I believe that > some people who are alcoholics and get cirrhosis might have gotten it > if they never took a drink in their life. Not every alcoholic gets > cirrhosis, so why does every alcoholic who does have to have gotten it > from the drinking. They could have been genetically inclined toward > liver problems just as my family is and as someone else mentioned > their family. My grandfather was diagnosed with pernicious anemia in > the 1930s. That was given as his cause of death, but the symptoms to > cirrhosis are very similar. Also, one of his sons, died of > hemochromatosis which eventually turned into cancer. His daughter is > on hemo dialysis now to cut down the iron in her blood.Her doctors > think our common grandfather died of hemochromatosis. We are double > cousins as our mothers are sisters and and fathers were brothers. > Guess it doesn't matter which he died of, just that it is in the > family, I have been told I should be checked for hemochromotosis > because it is possible to have both cirrhosis and hemochromotosis. I > have never asked, but since I am very anemic, non iron related as far > as we know, I am sure some doctor has ruled that out. > > Annie, I think it was you who was talking about the treatment. There > really isn't much treatment for the cirrhosis. There are some things > you can do to cut down on some symptoms, and I think they have been > mentioned here, basically, I cut down on meat. keep my bp as low as > can and still be normal, and watch for some of the complications. The > one I have which sometimes drives me crazy and keeps me from sleeping > frequently is itching. I had the itching before my diagnosis. Before > I cut down on meat, I did have a couple of instances of hepatic > enchephalopathy, but since they were short term, they were sort of > funny. Well, wrote another chapter and have to check the wash > machine. Hope i have said something helpful to someone. Jan > > > > Dear Lorraine, I understand what you are saying. I saw a prayer in the doctor's > > office last week, ( I am being seen by an oncologist for treatment of a tumor > > in/on my 7th rib on the left side) and the prayer said something like this " I > > pray that I might do something today to be positive and make this day > > worthwhile, to be all that I can, for the price of this day is 24 precious hours > > of my life... " or something like that. I know that the end is nearer for me than > > most of my friends and family, but whenever that might be, they all won't be far > > behind. If I start to think like you were, when you said that you were a " dead > > woman walking " , well, I will have a panic attack. I try to stay grounded right > > in the here and now. In AA we have a blunt saying that if you step with one foot > > in tomorrow, and one foot in yesterday, you are probably pissing on today " . I > > know it is a rude saying, and you are a lady, so I apologize, but it is true. > > Big hug. Love, Bobby > > > > > > > > > > > > ________________________________ > > > > To: livercirrhosissupport > > Sent: Sat, March 26, 2011 9:18:15 AM > > Subject: Re: intro > > > > > > Good morning folks. The posts today were so so helpful to me. I am not a drinker > > either and to hear so many others say the same sure lifted my spirits. The first > > thing everyone thinks is that you were an alcoholic. What a surprise when I > > heard I had liver cirrhosis, I guess it is end stage. It was never really > > explained thoroughly. I too had liver disease in my family (mother, also not a > > drinker), Go figure!! I am in a quandry though. I have some sort of blood > > disorder where I need protein. Now I read all over the place that we need low > > protein, low salt diets. So, darned if you don't and darned if you do!! The > > fatigue is amazing though. I get so sleepy and have no energy or urge to do > > stuff. Hopefully when summer gets here it will be better, I am soo cold all the > > time. The hematologist says he thinks the blood disorder is because of the liver > > yet previously they all said no way. I see him as well as the GI doctor (every > > six months) and now once a > > year I will see a hepatologist( I guess) at the Lahey Clinic in Boston. All she > > did was give me Nadolol to keep my blood pressure down because I have the > > gastric varices and the GI guy gave me omeprazole. That's about all the > > treatment I am getting. I am kinda lost as to what's going on. Is it my age (73) > > and they figure I will not last much longer anyhow. It is kind of depressing. > > The other night I felt like dead woman walking. When I get like that though the > > Lord grabs ahold of me and says hang on child, I am walking with you and we will > > make it together. PS my mother passed with the same symptoms listed on the info > > page and I am happy to say it was very peaceful. > > > > > > > >> > >> > >> Thank you so much Bobby it was very informative ..I will tell you that I have > >>never drank,mine is from meds > >> and in 1978 I had the old style intestinal bypass to lose weight ( I lost > >>weight but it don't work forever I am heavy now),,,they tell me my liver is in > >>stress because its not getting the nutrients it needed from my surgery. > >> They cut off 18 feet of my intestines reattached it to my stomach,,,I think > >>thats right...I will try and follow the tips on dieting > >> I found I also love mexican food it tastes the best to me...I have lost a small > >>amount of weight from this illness ....I guess you can say I am a beginner > >> I do get tired ,no interest in much except church.. > >> You are a real blessing to me > >> I am so sorry for the loss of your friend ,,that is hard!! hugs to you! > >> Thanks again > >> Annie > >> > >> > >> > >>> To: livercirrhosissupport > >>> From: robwalkingeagle@... > >>> Date: Fri, 25 Mar 2011 20:33:07 -0700 > >>> Subject: Re: intro > >>> > >>> Dear Annie, Hi my name is Bobby Aragon. I live in Denver Colorado. I am 47, > >>and > >>> was a caretaker for my best friend in the whole world, Ardis- whom passed > > away > >>> from alcoholic cirrhosis in 2006. Her death caused me to get sober , and two > >>> months after she died, I found out I have cirrhosis just like she did. > >>> > >>> > >>> http://onethreezeroonethree.blogspot.com/ > >>> > >>> I thought this was impossible at the time, because I only drank beer, but > >>>sadly, > >>> alcohol is all the same, something I did not know. I thought cirrhosis was > >>what > >>> happened to drinkers of hard liquor only. Boy I was wrong. When I tell people > >>> how I got sick, they always do a double take, because it is a common > >>> misconception that beer is safe. I was a serious beer drinker before my loved > >>> one died, but after she died, I fell off the deep end, and went on to a > >>>drinking > >>> binge of about a month and a half, and could not stop untill I realized I was > >>> dying. I was having unstoppable nose bleeds, and many other scary things, but > >>> doctors kept telling me that I did not have any kind of liver disease > >>> whatsoever. so I kept right on drinking. I lost about a hundred pounds before > >>>it > >>> was over. I might have not stopped, but I knew in my heart, and when I was > >>> having my gallbladder taken out in November that year, the surgeon took a > >>liver > >>> biopsy. He told me " well,pal, you definately have cirrhosis. " I asked him > > how > >>> much of the liver was involved, was there just some bad spots, and he said, > > no > >>> it is the entire thing, macronodular cirrhosis, which is big bumps, not the > >>> small ones normally associated with drinking. > >>> > >>> The main thing I would tell you from my own experience is not really advice, > >>>but > >>> rather just some pointers. > >>> First, the only cure for advance cirrhosis once severe complications start is > >>>a > >>> liver transplant. > >>> > >>> A good doctor can manage the symptoms of this disease but a lot of people make > >>>a > >>> big mistake and think a primary care doctor can manage it, but truely a > >>> hepatologist is much much better. I am not giving you medical advice, i am not > >>>a > >>> doctor, I am just saying from experience- liver disease is complicated, and > >>> serious. No one would let a primary care doctor take care of heart disease, > >>yet > >>> many people I meet tell me they have not seen a hepatologist, for one reason > >>or > >>> another, and I feel it is a mistake. > >>> > >>> Even if a person is not interested in a liver transplant, a good hepatologist > >>> will be much much more capable of making the person comfortable, and tracking > >>> the MELD score, thereby facilitating when hospice is needed and so on. My > >>loved > >>> one Ardis was first seen at the teaching hospital here in Denver, and that > > was > >>> fine for her, but when she gave control of her care to me via power of > >>>attorney, > >>> I took her to the university and get her in to see the transplant team, and > >>>even > >>> though she did not get a transplant, when she was admitted to the hospital, > >>she > >>> was on the transplant floor. They treat you totally different up on the > >>> transplant floor. I cannot put it in to words, but let's jkust say iot is > > much > >>> much nicer, and better, and competant there. > >>> > >>> My hepatologist has told me to stay away from salty food, and try to keep my > >>> sodium below 2000 Milligrams a day, which everyone is suoppoed to do anyway. > >>He > >>> has me on a heart healthy diet, avoiding too much fat and sugar, and > >>especially > >>> protien. I used to be a moderate to big meat eater, but now meat is nothing > >>>more > >>> than a garnish. If I do eat over two ounces of meat, I will develop high > >>> ammonia, and it causes fights with my wife, and confusion,and sleeplessness, > >>> halucinations, and a really bad taste in my mouth. My favorite food is > > nachos. > >>> Salt free chips, salt free beans, shredded cheese, a few jalapenos, chopped > >>> onions, chopped tomatoes, taco sauce, and a sprinklle of hamburger, plain. We > >>> weigh all the ingerdiants so I cvan keep to my salt restriction. I do not eat > >>> salt for breakfast most days, so it is not a prtoblem at all. > >>> > >>> Thanks for listening to me ramble, and thanks for joining our group(family) > >>> Love, Bobby-moderator > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> ________________________________ > >>> > >>> To: liver cirrhosis support <livercirrhosissupport > > >>> Sent: Sat, March 26, 2011 1:43:23 AM > >>> Subject: intro > >>> > >>> > >>> > >>> > >>> My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had > >>>been > >>> diagnosed with cirrhosis Just about a year ago. > >>> I have had several tests done,,they did a liver biopsy in February. I don't > >>> know a lot about this if there are any safe products to take to help > >>> I an scared and confused. > >>> they did the biopsy thru my jugular vein...no disease (cancer or such).. > >>> I guess I am trying to find out from others who may have had this longer than > >>I > >>> and any tips you may have. > >>> More about me I have been married for almost 52 years ,11 grand kids and 6 > >>>great > >>> grand kids,I live in the thumb area of Michigan. > >>> I guess that's it for now. > >>> > >>> Annie > >>> > >>> > >>> > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2011 Report Share Posted March 27, 2011 Bless you Jackie. Your note brought tears to my eyes. I went through such a bad year last year and I know the Lord was there for me. A couple of times I was sooo angry, but one day out of the blue I shouted( I was alone in the house thank God), " devil, you won't get me. I do believe strongly in God. I have a plaque in my home that says Thank you Lord for ways being there ready to listen, I visited a new church today and I did feel good about it. Hopefully this will become my new church home here in Maine, Thanks again for your kind and uplifting note  Lorraine > > > Thank you so much Bobby  it was very informative ..I will tell you that I have never drank,mine is from meds > and in 1978 I had the old style intestinal bypass to lose weight ( I lost weight but it don't work forever I am heavy now),,,they tell me my liver is in stress because its not getting the nutrients it needed from my surgery. > They cut off 18 feet of my intestines reattached it  to my stomach,,,I think thats right...I will try and follow the tips on dieting > I found I also love mexican food it tastes the best to me...I have lost a small amount of weight from this illness  ....I guess you can say I am a beginner > I do get tired ,no interest in much except church.. > You are a real blessing to me > I am so sorry for the loss of your friend ,,that is hard!!  hugs to you! > Thanks again > Annie > > > >> To: livercirrhosissupport >> From: robwalkingeagle@... >> Date: Fri, 25 Mar 2011 20:33:07 -0700 >> Subject: Re: intro >> >> Dear Annie, Hi my name is Bobby Aragon. I live in Denver Colorado. I am 47, and >> was a caretaker for my best friend in the whole world, Ardis- whom passed away >> from alcoholic cirrhosis in 2006. Her death caused me to get sober , and two >> months after she died, I found out I  have cirrhosis just like she did. >> >> >> http://onethreezeroonethree.blogspot.com/ >> >> I thought this was impossible at the time, because I only drank beer, but sadly, >> alcohol is all the same, something I did not know. I thought cirrhosis was what >> happened to drinkers of hard liquor only. Boy I was wrong. When I tell people >> how I got sick, they always do a double take, because it is a common >> misconception that beer is safe. I was a serious beer drinker before my loved >> one died, but after she died, I fell off the deep end, and went on to a drinking >> binge of about a month and a half, and could not stop untill I realized I was >> dying. I was having unstoppable nose bleeds, and many other scary things, but >> doctors kept telling me that I did not have any kind of liver disease >> whatsoever. so I kept right on drinking. I lost about a hundred pounds before it >> was over. I might have not stopped, but I knew in my heart, and when I was >> having my gallbladder taken out in November that year, the surgeon took a liver >> biopsy. He told me " well,pal, you definately have cirrhosis. " I asked him how >> much of the liver was involved, was there just some bad spots, and he said, no >> it is the entire thing, macronodular cirrhosis, which is big bumps, not the >> small ones normally associated with drinking. >> >> The main thing I would tell you from my own experience is not really advice, but >> rather just some pointers. >>  First, the only cure for advance cirrhosis once severe complications start is a >> liver transplant. >> >> A good doctor can manage the symptoms of this disease but a lot of people make a >> big mistake and think a primary care doctor can manage it, but truely a >> hepatologist is much much better. I am not giving you medical advice, i am not a >> doctor, I am just saying from experience- liver disease is complicated, and >> serious. No one would let a primary care doctor take care of heart disease, yet >> many people I meet tell me they have not seen a hepatologist, for one reason or >> another, and I feel it is a mistake. >> >> Even if a person is not interested in a liver transplant, a good hepatologist >> will be much much more capable of making the person comfortable, and tracking >> the MELD score, thereby facilitating when hospice is needed and so on. My loved >> one Ardis was first seen at the teaching hospital here in Denver, and that was >> fine for her, but when she gave control of her care to me via power of attorney, >> I took her to the university and get her in to see the transplant team, and even >> though she did not get a transplant, when she was admitted to the hospital, she >> was on the transplant floor. They treat you totally different up on the >> transplant floor. I cannot put it in to words, but let's jkust say iot is much >> much nicer, and better, and competant there. >> >> My hepatologist has told me to stay away from salty food, and try to keep my >> sodium below 2000 Milligrams a day, which everyone is suoppoed to do anyway. He >> has me on a heart healthy diet, avoiding too much fat and sugar, and especially >> protien. I used to be a moderate to big meat eater, but now meat is nothing more >> than a garnish. If I do eat over two ounces of meat, I will develop high >> ammonia, and it causes fights with my wife, and confusion,and sleeplessness, >> halucinations, and a really bad taste in my mouth. My favorite food is nachos. >> Salt free chips, salt free beans, shredded cheese, a few jalapenos, chopped >> onions, chopped tomatoes, taco sauce, and a sprinklle of hamburger, plain. We >> weigh all the ingerdiants so I cvan keep to my salt restriction. I do not eat >> salt for breakfast most days, so it is not a prtoblem at all. >> >> Thanks for listening to me ramble, and thanks for joining our group(family) >> Love, Bobby-moderator >> >> >> >> >> >> >> >> ________________________________ >> >> To: liver cirrhosis support <livercirrhosissupport > >> Sent: Sat, March 26, 2011 1:43:23 AM >> Subject: intro >> >> >> >> >> My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had been >> diagnosed with cirrhosis Just about a year ago. >> I have  had several tests done,,they did a liver biopsy  in February. I don't >> know a lot about this if there are any safe products to take to help >> I an scared and confused. >> they did the biopsy thru my jugular vein...no disease (cancer or such).. >> I guess I am trying to find out from others who may have had this longer than I >> and any tips you may have. >> More about me I have been married for almost 52 years ,11 grand kids and 6 great >> grand kids,I live in the thumb area of Michigan. >> I guess that's it for now. >> >> Annie >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2011 Report Share Posted March 27, 2011 Annie - I itch all over, but yes I have itching in the vaginal area. And that is one area where I can start bleeding very easilly, Usually my scratching the itches doesn't lead to sores, unless i have an uneven finger nail or something. But I have found oxyclean to be a big help to get the blood out. I think the itching is worse in areas where the skin overlaps, like under the boobs, flabby areas from my weight loss and of course the vaginal area. The itching can be anywhere, it is caused by the toxins in the blood which of course go to all parts of the body. A while back, I didn't realize it, but we had a buildup of soap in our washmachine. I am very sensitive to soap, so I run every load through twice which gives me three rinses. But it still wasn't getting all the soap out. I had to clean it four times with venegar before it seemed to have helped. I think it is partly these new concentrated soaps, Ed still uses the same amount. I know I have cut my usuage way down, but still still see some white flaky material in my dark slacks, even where my body is covered by something between, so I know it isn't dry skin. I had sores all over my body then, still have some which haven't completely healed. The blood which formed the clot to stop the bleeding was full of those toxins, and try as I might, I couldn't avoid scratching off the scabs, woke up in the middle of the night with blood running out of sores, so they took a long time to heal. Jan > > > Thank you so much.. > I am going to ask a personal question  men close your eyes  lol > Is the itching in the vaginal area? > I will leave it at that > Annie > > > >> To: livercirrhosissupport >> From: janholman@... >> Date: Sat, 26 Mar 2011 22:19:05 -0700 >> Subject: Re: intro >> >> Almost everybody jumped to the conclusion that I was an alcoholic when >> I told them I had cirrhosis too.  Except my step daughter, she said >> " Jan I have never seen you take a drink "  The idea is still out there >> that if you have cirrhosis, you must be an alcoholic.  In fact, >> alcohol isn't even the first cause of cirrhosis anymore.  Hepatitis >> has overtaken it.  And some people who have it, never used drugs, >> didn't share dirty needles.  At first, I made sure everybody knew I >> had non alcoholic of unknown origin cirrhosis when I first brought it >> up.  But after years of being on here with some who probably did get >> cirrhosis because of drinking, I have found that they are very nice >> people, don't deserve cirrhosis any more than the rest of us who >> didn't drink.  So, I try not to designate that mine is non alcoholic >> any more.  Of course it still comes up in conversations and then I >> will say that mine is of unknown origin, and tell them the >> possibilities I know of as a cause for me.  And also, I believe that >> some people who are alcoholics and get cirrhosis might have gotten it >> if they never took a drink in their life.  Not every alcoholic gets >> cirrhosis, so why does every alcoholic who does have to have gotten it >> from the drinking.  They could have been genetically inclined toward >> liver problems just as my family is and as someone else mentioned >> their family. My grandfather was diagnosed with pernicious anemia in >> the 1930s.  That was given as his cause of death, but the symptoms to >> cirrhosis are very similar.  Also, one of his sons, died of >> hemochromatosis which eventually turned into cancer.  His daughter is >> on hemo dialysis now to cut down the iron in her blood.Her doctors >> think our common grandfather died of hemochromatosis.  We are double >> cousins as our mothers are sisters and and fathers were brothers. >> Guess it doesn't matter which he died of, just that it is in the >> family, I have been told I should be checked for hemochromotosis >> because it is possible to have both cirrhosis and hemochromotosis.  I >> have never asked, but since I am very anemic, non iron related as far >> as we know, I am sure some doctor has ruled that out. >> >> Annie, I think it was you who was talking about the treatment.  There >> really isn't much treatment for the cirrhosis.  There are some things >> you can do to cut down on some symptoms, and I think they have been >> mentioned here, basically, I cut down on meat.  keep my bp as low as >> can and still be normal, and watch for some of the complications.  The >> one I have which sometimes drives me crazy and keeps me from sleeping >> frequently is itching.  I had the itching before my diagnosis.  Before >> I cut down on meat, I did have a couple of instances of hepatic >> enchephalopathy, but since they were short term, they were sort of >> funny.  Well, wrote another chapter and have to check the wash >> machine.  Hope i have said something helpful to someone.  Jan >> >> On Sat, Mar 26, 2011 at 2:09 PM, Bob Aragon wrote: >> > Dear Lorraine, I understand what you are saying. I saw a prayer in the doctor's >> > office last week, ( I am being seen by an oncologist for treatment of a tumor >> > in/on my 7th rib on the left side) and the prayer said something like this " I >> > pray that I might do something today to be positive and make this day >> > worthwhile, to be all that I can, for the price of this day is 24 precious hours >> > of my life... " or something like that. I know that the end is nearer for me than >> > most of my friends and family, but whenever that might be, they all won't be far >> > behind. If I start to think like you were, when  you said that you were a " dead >> > woman walking " , well, I will have a panic attack. I try to stay grounded right >> > in the here and now. In AA we have a blunt saying that if you step with one foot >> > in tomorrow, and one foot in yesterday, you are probably pissing on today " . I >> > know it is a rude saying, and you are a lady, so I apologize, but it is true. >> > Big hug. Love, Bobby >> > >> > >> > >> > >> > >> > ________________________________ >> > >> > To: livercirrhosissupport >> > Sent: Sat, March 26, 2011 9:18:15 AM >> > Subject: Re: intro >> > >> > >> > Good morning folks. The posts today were so so helpful to me. I am not a drinker >> > either and to hear so many others say the same sure lifted my spirits. The first >> > thing everyone thinks is that you were an alcoholic. What a surprise when I >> > heard I had liver cirrhosis, I guess it is end stage. It was never really >> > explained thoroughly. I too had liver disease in my family (mother, also not a >> > drinker), Go figure!! I am in a quandry though. I have some sort of blood >> > disorder where I need protein. Now I read all over the place that we need low >> > protein, low salt diets. So, darned if you don't and darned if you do!!  The >> > fatigue is amazing though. I get so sleepy and have no energy or urge to do >> > stuff. Hopefully when summer gets here it will be better, I am soo cold all the >> > time. The hematologist says he thinks the blood disorder is because of the liver >> > yet previously they all said no way. I see him as well as the GI doctor (every >> > six months) and now once a >> > year I will see a hepatologist( I guess) at the Lahey Clinic in Boston. All she >> > did was give me Nadolol to keep my blood pressure down because I have the >> > gastric varices and the GI guy gave me omeprazole. That's about all the >> > treatment I am getting. I am kinda lost as to what's going on. Is it my age (73) >> > and they figure I will not last much longer anyhow. It is kind of depressing. >> > The other night I felt like dead woman walking.  When I get like that though the >> > Lord grabs ahold of me and says hang on child, I am walking with you and we will >> > make it together.  PS my mother passed with the same symptoms listed on the info >> > page and I am happy to say it was very peaceful. >> > >> > >> > >> >> >> >> >> >> Thank you so much Bobby  it was very informative ..I will tell you that I have >> >>never drank,mine is from meds >> >> and in 1978 I had the old style intestinal bypass to lose weight ( I lost >> >>weight but it don't work forever I am heavy now),,,they tell me my liver is in >> >>stress because its not getting the nutrients it needed from my surgery. >> >> They cut off 18 feet of my intestines reattached it  to my stomach,,,I think >> >>thats right...I will try and follow the tips on dieting >> >> I found I also love mexican food it tastes the best to me...I have lost a small >> >>amount of weight from this illness  ....I guess you can say I am a beginner >> >> I do get tired ,no interest in much except church.. >> >> You are a real blessing to me >> >> I am so sorry for the loss of your friend ,,that is hard!!  hugs to you! >> >> Thanks again >> >> Annie >> >> >> >> >> >> >> >>> To: livercirrhosissupport >> >>> From: robwalkingeagle@... >> >>> Date: Fri, 25 Mar 2011 20:33:07 -0700 >> >>> Subject: Re: intro >> >>> >> >>> Dear Annie, Hi my name is Bobby Aragon. I live in Denver Colorado. I am 47, >> >>and >> >>> was a caretaker for my best friend in the whole world, Ardis- whom passed >> > away >> >>> from alcoholic cirrhosis in 2006. Her death caused me to get sober , and two >> >>> months after she died, I found out I  have cirrhosis just like she did. >> >>> >> >>> >> >>> http://onethreezeroonethree.blogspot.com/ >> >>> >> >>> I thought this was impossible at the time, because I only drank beer, but >> >>>sadly, >> >>> alcohol is all the same, something I did not know. I thought cirrhosis was >> >>what >> >>> happened to drinkers of hard liquor only. Boy I was wrong. When I tell people >> >>> how I got sick, they always do a double take, because it is a common >> >>> misconception that beer is safe. I was a serious beer drinker before my loved >> >>> one died, but after she died, I fell off the deep end, and went on to a >> >>>drinking >> >>> binge of about a month and a half, and could not stop untill I realized I was >> >>> dying. I was having unstoppable nose bleeds, and many other scary things, but >> >>> doctors kept telling me that I did not have any kind of liver disease >> >>> whatsoever. so I kept right on drinking. I lost about a hundred pounds before >> >>>it >> >>> was over. I might have not stopped, but I knew in my heart, and when I was >> >>> having my gallbladder taken out in November that year, the surgeon took a >> >>liver >> >>> biopsy. He told me " well,pal, you definately have cirrhosis. " I asked him >> > how >> >>> much of the liver was involved, was there just some bad spots, and he said, >> > no >> >>> it is the entire thing, macronodular cirrhosis, which is big bumps, not the >> >>> small ones normally associated with drinking. >> >>> >> >>> The main thing I would tell you from my own experience is not really advice, >> >>>but >> >>> rather just some pointers. >> >>>  First, the only cure for advance cirrhosis once severe complications start is >> >>>a >> >>> liver transplant. >> >>> >> >>> A good doctor can manage the symptoms of this disease but a lot of people make >> >>>a >> >>> big mistake and think a primary care doctor can manage it, but truely a >> >>> hepatologist is much much better. I am not giving you medical advice, i am not >> >>>a >> >>> doctor, I am just saying from experience- liver disease is complicated, and >> >>> serious. No one would let a primary care doctor take care of heart disease, >> >>yet >> >>> many people I meet tell me they have not seen a hepatologist, for one reason >> >>or >> >>> another, and I feel it is a mistake. >> >>> >> >>> Even if a person is not interested in a liver transplant, a good hepatologist >> >>> will be much much more capable of making the person comfortable, and tracking >> >>> the MELD score, thereby facilitating when hospice is needed and so on. My >> >>loved >> >>> one Ardis was first seen at the teaching hospital here in Denver, and that >> > was >> >>> fine for her, but when she gave control of her care to me via power of >> >>>attorney, >> >>> I took her to the university and get her in to see the transplant team, and >> >>>even >> >>> though she did not get a transplant, when she was admitted to the hospital, >> >>she >> >>> was on the transplant floor. They treat you totally different up on the >> >>> transplant floor. I cannot put it in to words, but let's jkust say iot is >> > much >> >>> much nicer, and better, and competant there. >> >>> >> >>> My hepatologist has told me to stay away from salty food, and try to keep my >> >>> sodium below 2000 Milligrams a day, which everyone is suoppoed to do anyway. >> >>He >> >>> has me on a heart healthy diet, avoiding too much fat and sugar, and >> >>especially >> >>> protien. I used to be a moderate to big meat eater, but now meat is nothing >> >>>more >> >>> than a garnish. If I do eat over two ounces of meat, I will develop high >> >>> ammonia, and it causes fights with my wife, and confusion,and sleeplessness, >> >>> halucinations, and a really bad taste in my mouth. My favorite food is >> > nachos. >> >>> Salt free chips, salt free beans, shredded cheese, a few jalapenos, chopped >> >>> onions, chopped tomatoes, taco sauce, and a sprinklle of hamburger, plain. We >> >>> weigh all the ingerdiants so I cvan keep to my salt restriction. I do not eat >> >>> salt for breakfast most days, so it is not a prtoblem at all. >> >>> >> >>> Thanks for listening to me ramble, and thanks for joining our group(family) >> >>> Love, Bobby-moderator >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> >> >>> ________________________________ >> >>> >> >>> To: liver cirrhosis support <livercirrhosissupport > >> >>> Sent: Sat, March 26, 2011 1:43:23 AM >> >>> Subject: intro >> >>> >> >>> >> >>> >> >>> >> >>> My real name is Sharon but I prefer Annie (my middle name),,I am 67 and had >> >>>been >> >>> diagnosed with cirrhosis Just about a year ago. >> >>> I have  had several tests done,,they did a liver biopsy  in February. I don't >> >>> know a lot about this if there are any safe products to take to help >> >>> I an scared and confused. >> >>> they did the biopsy thru my jugular vein...no disease (cancer or such).. >> >>> I guess I am trying to find out from others who may have had this longer than >> >>I >> >>> and any tips you may have. >> >>> More about me I have been married for almost 52 years ,11 grand kids and 6 >> >>>great >> >>> grand kids,I live in the thumb area of Michigan. >> >>> I guess that's it for now. >> >>> >> >>> Annie >> >>> >> >>> >> >>> >> >>> Quote Link to comment Share on other sites More sharing options...
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