Guest guest Posted August 16, 2008 Report Share Posted August 16, 2008 1/2 cup Fiber One cereal 14 dried blueberries.....(yes it tastes like cardboard, I take it with a packet of Splenda and think of it like medicine).... Go fiber!!! Hope you have a great visit with your daughter. Pamela New member intro & questions Hi everyone, my name is . I'm in Long Beach, So Cal. I found this group whilst flailing around for answers. It's a real understatement to say that my medicare-advantage- plan docs have been way less than forthcoming with information, diagnosis, and prognosis-they' ve played dumb & sandbagged me at every step. So, here's da short version of my situation: I'm now 51, was a moderately heavy drinker most of adult life. Had to pitch a fit to get doc sandbag to test me, but in 04 found out I had HCV, (I'm proof, wear your raincoats people!) had biopsy done: Stage 3. Stopped drinking. Insurance/IPA/ med group refused to pay for pegasys treatment. My mind was still pretty clear back then. I got online & found the Viser 2, research study. At that point, it was a phase 2 study investigating Viramidine to treat HCV. Was included in that study & was treated in 05 by the best med team I had ever met. I was very fortunate, my treatment was successful!! ! I had thought my liver problems were behind me. The HCV was then, and still is undetectable. However, in 07, I began feeling worse than ever, worse even than when going through treatment. Got retested for C and several other things, to no avail. Spring of 08, switched insurance & docs. By that time, getting so foggy I can't hardly complete a sentence, extreme hangover (no booze), night/day sleep patterns reversed, often sleeping 16-18 hrs, mostly two hrs at a time, can hardly move--80lb weight gain. New doc couldn't figure it, med group wouldn't spring for an experienced hepatologist, instead sent me to an in-house ID guy. I wrote down then my googled my symptoms, turns up as mild Encephalopathy. Well, DUH. Reluctant doc then tests for ammonia. 118 kinda high, put me on Lactulose, got some sorta-okay relief for now. So, thank you if you're patient enough to have read this far. I've a couple questions if you all would be so kind as to indulge me. 1. Ballpark, roughly how long before the Lactulose quits working? 2. On average, how long for the encephalopathy to run it's course, to the point I'll lose independence and ability to function? I'm scared, but must face hard facts and prepare ASAP, because I live alone and have no close friends, or family to depend upon. Incidentally, I have a rather difficult time making new friends now because I am late-deafened; I do have some limited hearing with a cochlear implant. I would guess that without a support structure, I won't even qualify for placement on transplant list. So, what to do?? I apologize for this bein so wordy. Thanks in advance, for any thoughts. Peace & good wishes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2008 Report Share Posted August 16, 2008 Thank You Pamela. That was a very kind thing to say. It kinda scares me that everyone is comming to see me. :-) Not only that but people all of the sudden became nice. :-) They want to fix me crap but after getting 28 litres of fluid removed I can get up and wait on myself. She like most daughters thinks her Daddy hung the moon in the sky so she'll ride the last couple months out with me. They found another tumor on the back of my liver. You wouldn't know it by the way a feel...which is good. They told me that a paracentesis will happen every few days from now till. I think that is one reason she decided to come to town. She worries about my sugar levels and driving. So I am going to get the biggest, bulkiest, heavy wheel chair I can fiind and she can load me and that heavy chair up everytime I need to go somewhere. I can get creative and figure out about 40 errands a day that I need to do. (winks and giggles). Take care my friend. Chief Little Eagle Subject: Re: New member intro & questions To: livercirrhosissupport Date: Saturday, August 16, 2008, 6:36 PM Hi, . I'm Bobby, a recovering alcoholic approaching my two year sobriety date, suffering with end stage liver disease and some of it's fun fun fun side effects. I have no ascites and only mild edema, but I do have elevated ammonia, and hepatopulomnary syndrome from too much nitric oxide. I am very very lactulose dependant, and I would caution you to not assume that it will stop working. Lactulose is a strange substance, indeed. For some , it never works at all. For others, they cant live long without it. I have found things that can make it work better. I'm sure by now that you know that your colon is the culprit here, so thinking along those lines, I have come to realize how and why lactulose works for me. WARNING WARNING WARNING- IF POOP,enemas AND COLONS BOTHER YOU, STOP READING NOW!!! When I get elevated ammonia, I can literally taste it in my mouth. Sometimes I get a sweet flavor, and sometimes metallic. Other times, I get a solvent taste, just like ammonia smells. So, since I take narcotic pain relievers, I have a problem keeping things loose. If you don't have two or three loose stools a day, the lactulose will not work or will not work as good. You need the two to three loose stools a day. If I cant have loose stools for some reason, or just don't get the urge to go, I use drastic measures. Now I am not recommending you use drastic measures, but for me, I get very very sick if I have bowel retention. Drastic measures can include other laxatives, fleet enema, suppositories,etc. This is not very often, because I eat high fiber cereal as my staple food. Three times a day, I am eating high fiber cereal. Instead of a dessert at dinner with my cup of coffee, I will snack on a cup of granola, or honeybunches of oats. I also take colase, which is a stool sofener recommended by all of my doctors. My diet is low protien, and that helps too. If I have nachos for instance, there is only sprinkling of meat. I could put the meat in the salt shaker, because I dont use the salt shaker anymore, and I only have a sprinkling of meat usually. Now, occasionally I do go to Mac 's and have a hamburger, but that is once a month. Thats when I taste the ammonia and mercaptans. Plus, I get all kinds of mental goofiness. Hope this helps. BTW, so you have end stage liver disease? I never got weather you do or not? Bobby, Moderator, Livercirrhosissupport. New member intro & questions Hi everyone, my name is . I'm in Long Beach, So Cal. I found this group whilst flailing around for answers. It's a real understatement to say that my medicare-advantage- plan docs have been way less than forthcoming with information, diagnosis, and prognosis-they' ve played dumb & sandbagged me at every step. So, here's da short version of my situation: I'm now 51, was a moderately heavy drinker most of adult life. Had to pitch a fit to get doc sandbag to test me, but in 04 found out I had HCV, (I'm proof, wear your raincoats people!) had biopsy done: Stage 3. Stopped drinking. Insurance/IPA/ med group refused to pay for pegasys treatment. My mind was still pretty clear back then. I got online & found the Viser 2, research study. At that point, it was a phase 2 study investigating Viramidine to treat HCV. Was included in that study & was treated in 05 by the best med team I had ever met. I was very fortunate, my treatment was successful!! ! I had thought my liver problems were behind me. The HCV was then, and still is undetectable. However, in 07, I began feeling worse than ever, worse even than when going through treatment. Got retested for C and several other things, to no avail. Spring of 08, switched insurance & docs. By that time, getting so foggy I can't hardly complete a sentence, extreme hangover (no booze), night/day sleep patterns reversed, often sleeping 16-18 hrs, mostly two hrs at a time, can hardly move--80lb weight gain. New doc couldn't figure it, med group wouldn't spring for an experienced hepatologist, instead sent me to an in-house ID guy. I wrote down then my googled my symptoms, turns up as mild Encephalopathy. Well, DUH. Reluctant doc then tests for ammonia. 118 kinda high, put me on Lactulose, got some sorta-okay relief for now. So, thank you if you're patient enough to have read this far. I've a couple questions if you all would be so kind as to indulge me. 1. Ballpark, roughly how long before the Lactulose quits working? 2. On average, how long for the encephalopathy to run it's course, to the point I'll lose independence and ability to function? I'm scared, but must face hard facts and prepare ASAP, because I live alone and have no close friends, or family to depend upon. Incidentally, I have a rather difficult time making new friends now because I am late-deafened; I do have some limited hearing with a cochlear implant. I would guess that without a support structure, I won't even qualify for placement on transplant list. So, what to do?? I apologize for this bein so wordy. Thanks in advance, for any thoughts. Peace & good wishes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2008 Report Share Posted August 17, 2008 CLE -- I know what you mean about people all of a sudden getting very nice. My youngest brother had only called me a couple of times before I had my triple bypass. Then he called every week at least for a couple of month. Now he is down to every two weeks. I wonder how long it will take before the calls are a month apart. Will another crisis come about before he quits calling all together? Jan H On Sat, Aug 16, 2008 at 9:49 PM, Chief Little Eagle < surfer_beachbum18@...> wrote: > Thank You Pamela. That was a very kind thing to say. It kinda scares me > that everyone is comming to see me. :-) Not only that but people all of the > sudden became nice. :-) They want to fix me crap but after getting 28 litres > of fluid removed I can get up and wait on myself. She like most daughters > thinks her Daddy hung the moon in the sky so she'll ride the last couple > months out with me. They found another tumor on the back of my liver. You > wouldn't know it by the way a feel...which is good. > > They told me that a paracentesis will happen every few days from now till. > I think that is one reason she decided to come to town. She worries about my > sugar levels and driving. So I am going to get the biggest, bulkiest, heavy > wheel chair I can fiind and she can load me and that heavy chair up > everytime I need to go somewhere. I can get creative and figure out about 40 > errands a day that I need to do. (winks and giggles). > > Take care my friend. > > Chief Little Eagle > > > > From: Bob Aragon <robwalkingeagle@... <robwalkingeagle%40yahoo.com>> > Subject: Re: New member intro & questions > To: livercirrhosissupport <livercirrhosissupport%40yahoogroups.com> > Date: Saturday, August 16, 2008, 6:36 PM > > Hi, . I'm Bobby, a recovering alcoholic approaching my two year > sobriety > date, suffering with end stage liver disease and some of it's fun fun fun > side effects. I have no ascites and only mild edema, but I do have elevated > ammonia, and hepatopulomnary syndrome from too much nitric oxide. I am very > > very > lactulose dependant, and I would caution you to not assume that it will > stop > working. Lactulose is a strange substance, indeed. For some , it never > works > at > all. For others, they cant live long without it. I have found things that > can > make it work better. I'm sure by now that you know that your colon is the > culprit here, so thinking along those lines, I have come to realize how and > > why > lactulose works for me. > WARNING WARNING WARNING- IF POOP,enemas AND COLONS BOTHER YOU, STOP READING > NOW!!! > When I get elevated ammonia, I can literally taste it in my mouth. > Sometimes > I > get a sweet flavor, and sometimes metallic. Other times, I get a solvent > taste, > just like ammonia smells. So, since I take narcotic pain relievers, I have > a > problem keeping things loose. If you don't have two or three loose stools a > day, the lactulose will not work or will not work as good. You need the two > > to > three loose stools a day. If I cant have loose stools for some reason, or > just > don't get the urge to go, I use drastic measures. Now I am not recommending > you use drastic measures, but for me, I get very very sick if I have bowel > retention. Drastic measures can include other laxatives, fleet enema, > suppositories,etc. This is not very often, because I eat high fiber cereal > as my > staple food. Three times a day, I am eating high fiber cereal. Instead of a > dessert at dinner with my cup of coffee, I will snack on a cup of granola, > or > honeybunches of oats. I also take colase, > which is a stool sofener recommended by all of my doctors. My diet is low > protien, and that helps too. If I have nachos for instance, there is only > sprinkling of meat. I could put the meat in the salt shaker, because I dont > > use > the salt shaker anymore, and I only have a sprinkling of meat usually. Now, > occasionally I do go to Mac 's and have a hamburger, but that is once > a month. Thats when I taste the ammonia and mercaptans. Plus, I get all > kinds of > mental goofiness. Hope this helps. BTW, so you have end stage liver > disease? > I > never got weather you do or not? Bobby, Moderator, Livercirrhosissupport. > > New member intro & questions > > Hi everyone, my name is . I'm in Long Beach, So Cal. I found this > group whilst flailing around for answers. It's a real understatement > to say that my medicare-advantage- plan docs have been way less than > forthcoming with information, diagnosis, and prognosis-they' ve played > dumb & sandbagged me at every step. So, here's da short version of my > situation: I'm now 51, was a moderately heavy drinker most of adult > life. Had to pitch a fit to get doc sandbag to test me, but in 04 > found out I had HCV, (I'm proof, wear your raincoats people!) had > biopsy done: Stage 3. Stopped drinking. Insurance/IPA/ med group > refused to pay for pegasys treatment. > > My mind was still pretty clear back then. I got online & found the > Viser 2, research study. At that point, it was a phase 2 study > investigating Viramidine to treat HCV. Was included in that study & > was treated in 05 by the best med team I had ever met. I was very > fortunate, my treatment was successful!! ! I had thought my liver > problems were behind me. The HCV was then, and still is undetectable. > > However, in 07, I began feeling worse than ever, worse even than when > going through treatment. Got retested for C and several other things, > to no avail. > Spring of 08, switched insurance & docs. By that time, getting so > foggy I can't hardly complete a sentence, extreme hangover (no > booze), night/day sleep patterns reversed, often sleeping 16-18 hrs, > mostly two hrs at a time, can hardly move--80lb weight gain. New doc > couldn't figure it, med group wouldn't spring for an experienced > hepatologist, instead sent me to an in-house ID guy. > > I wrote down then my googled my symptoms, turns up as mild > Encephalopathy. > Well, DUH. Reluctant doc then tests for ammonia. 118 kinda high, put > me on Lactulose, got some sorta-okay relief for now. So, thank you if > you're patient enough to have read this far. I've a couple questions > if you all would be so kind as to indulge me. > > 1. Ballpark, roughly how long before the Lactulose quits working? > 2. On average, how long for the encephalopathy to run it's > course, to the point I'll lose independence and ability to function? > > I'm scared, but must face hard facts and prepare ASAP, because I live > alone and have no close friends, or family to depend upon. > Incidentally, I have a rather difficult time making new friends now > because I am late-deafened; I do have some limited hearing with a > cochlear implant. I would guess that without a support structure, I > won't even qualify for placement on transplant list. So, what to > do?? I apologize for this bein so wordy. Thanks in advance, for any > thoughts. > Peace & good wishes > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2008 Report Share Posted August 17, 2008 Hello Little Eagle, I just wanted to say to you that I enjoy your posts so much. You have such a unique way of expressing yourself and such a down-to- earth, common sense way of seeing things. It makes one realize that this disease isn't the monster we think it is; it's just all in how you see it! Thank you for being so positive and so laidback! You have been an inspiration to me. God bless you always! Love and hugs......... Diane C. from TN > > Thank You Pamela. That was a very kind thing to say. It kinda scares me that everyone is comming to see me. :-) Not only that but people all of the sudden became nice. :-) They want to fix me crap but after getting 28 litres of fluid removed I can get up and wait on myself. She like most daughters thinks her Daddy hung the moon in the sky so she'll ride the last couple months out with me. They found another tumor on the back of my liver. You wouldn't know it by the way a feel...which is good. > > They told me that a paracentesis will happen every few days from now till. I think that is one reason she decided to come to town. She worries about my sugar levels and driving. So I am going to get the biggest, bulkiest, heavy wheel chair I can fiind and she can load me and that heavy chair up everytime I need to go somewhere. I can get creative and figure out about 40 errands a day that I need to do. (winks and giggles). > > Take care my friend. > > Chief Little Eagle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2008 Report Share Posted August 17, 2008 You guys are lucky to have your family nice to you. I wish my family would be nice to my mom. When my mom found out she had Cirrhosis of the liver and Encephalopathy set in, my mom's own sister basically disowned her. My mom has been living with my grandma for 14 years. My aunt moved from across the country and moved in with them. She has been here for a year. Well after my mom got confused and went to the emergency room several times, my aunt refused to let my mother come back home. She basically kicked her out of her own home and is now turning other family members against my mother. It is so sad for my mother to deal with. My mom now lives with me and my family. I just can't understand why my aunt did that, I think she is in denial. Stefanie > > > > From: Bob Aragon <robwalkingeagle@... <robwalkingeagle%40yahoo.com>> > > Subject: Re: New member intro & questions > > To: livercirrhosissupport <livercirrhosissupport%40yahoogroups.com> > > Date: Saturday, August 16, 2008, 6:36 PM > > > > Hi, . I'm Bobby, a recovering alcoholic approaching my two year > > sobriety > > date, suffering with end stage liver disease and some of it's fun fun fun > > side effects. I have no ascites and only mild edema, but I do have elevated > > ammonia, and hepatopulomnary syndrome from too much nitric oxide. I am very > > > > very > > lactulose dependant, and I would caution you to not assume that it will > > stop > > working. Lactulose is a strange substance, indeed. For some , it never > > works > > at > > all. For others, they cant live long without it. I have found things that > > can > > make it work better. I'm sure by now that you know that your colon is the > > culprit here, so thinking along those lines, I have come to realize how and > > > > why > > lactulose works for me. > > WARNING WARNING WARNING- IF POOP,enemas AND COLONS BOTHER YOU, STOP READING > > NOW!!! > > When I get elevated ammonia, I can literally taste it in my mouth. > > Sometimes > > I > > get a sweet flavor, and sometimes metallic. Other times, I get a solvent > > taste, > > just like ammonia smells. So, since I take narcotic pain relievers, I have > > a > > problem keeping things loose. If you don't have two or three loose stools a > > day, the lactulose will not work or will not work as good. You need the two > > > > to > > three loose stools a day. If I cant have loose stools for some reason, or > > just > > don't get the urge to go, I use drastic measures. Now I am not recommending > > you use drastic measures, but for me, I get very very sick if I have bowel > > retention. Drastic measures can include other laxatives, fleet enema, > > suppositories,etc. This is not very often, because I eat high fiber cereal > > as my > > staple food. Three times a day, I am eating high fiber cereal. Instead of a > > dessert at dinner with my cup of coffee, I will snack on a cup of granola, > > or > > honeybunches of oats. I also take colase, > > which is a stool sofener recommended by all of my doctors. My diet is low > > protien, and that helps too. If I have nachos for instance, there is only > > sprinkling of meat. I could put the meat in the salt shaker, because I dont > > > > use > > the salt shaker anymore, and I only have a sprinkling of meat usually. Now, > > occasionally I do go to Mac 's and have a hamburger, but that is once > > a month. Thats when I taste the ammonia and mercaptans. Plus, I get all > > kinds of > > mental goofiness. Hope this helps. BTW, so you have end stage liver > > disease? > > I > > never got weather you do or not? Bobby, Moderator, Livercirrhosissupport. > > > > New member intro & questions > > > > Hi everyone, my name is . I'm in Long Beach, So Cal. I found this > > group whilst flailing around for answers. It's a real understatement > > to say that my medicare-advantage- plan docs have been way less than > > forthcoming with information, diagnosis, and prognosis-they' ve played > > dumb & sandbagged me at every step. So, here's da short version of my > > situation: I'm now 51, was a moderately heavy drinker most of adult > > life. Had to pitch a fit to get doc sandbag to test me, but in 04 > > found out I had HCV, (I'm proof, wear your raincoats people!) had > > biopsy done: Stage 3. Stopped drinking. Insurance/IPA/ med group > > refused to pay for pegasys treatment. > > > > My mind was still pretty clear back then. I got online & found the > > Viser 2, research study. At that point, it was a phase 2 study > > investigating Viramidine to treat HCV. Was included in that study & > > was treated in 05 by the best med team I had ever met. I was very > > fortunate, my treatment was successful!! ! I had thought my liver > > problems were behind me. The HCV was then, and still is undetectable. > > > > However, in 07, I began feeling worse than ever, worse even than when > > going through treatment. Got retested for C and several other things, > > to no avail. > > Spring of 08, switched insurance & docs. By that time, getting so > > foggy I can't hardly complete a sentence, extreme hangover (no > > booze), night/day sleep patterns reversed, often sleeping 16-18 hrs, > > mostly two hrs at a time, can hardly move--80lb weight gain. New doc > > couldn't figure it, med group wouldn't spring for an experienced > > hepatologist, instead sent me to an in-house ID guy. > > > > I wrote down then my googled my symptoms, turns up as mild > > Encephalopathy. > > Well, DUH. Reluctant doc then tests for ammonia. 118 kinda high, put > > me on Lactulose, got some sorta-okay relief for now. So, thank you if > > you're patient enough to have read this far. I've a couple questions > > if you all would be so kind as to indulge me. > > > > 1. Ballpark, roughly how long before the Lactulose quits working? > > 2. On average, how long for the encephalopathy to run it's > > course, to the point I'll lose independence and ability to function? > > > > I'm scared, but must face hard facts and prepare ASAP, because I live > > alone and have no close friends, or family to depend upon. > > Incidentally, I have a rather difficult time making new friends now > > because I am late-deafened; I do have some limited hearing with a > > cochlear implant. I would guess that without a support structure, I > > won't even qualify for placement on transplant list. So, what to > > do?? I apologize for this bein so wordy. Thanks in advance, for any > > thoughts. > > Peace & good wishes > > > > > > Quote Link to comment Share on other sites More sharing options...
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