Guest guest Posted August 17, 2008 Report Share Posted August 17, 2008 Love it CLE!!! Joy in the journey, you are good at it!! Lord Bless you! The photo is of what eats our garden. This is an older winter photo, but these big babies love my cabbage, infact they ate all 12 I planted last year. 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 17, 2008 Report Share Posted August 17, 2008 Ooops didn't realize I couldn't post a picture. I'll put it up on the yahoogroups photo page. 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 17, 2008 Report Share Posted August 17, 2008 :-) That garden is a sore spot with me today. I was out there a piddling and a thunderstorm blew up. Lightning like all get out. I figured that I would get as low to the ground as possible so I sat down. I sat right down in a gob of fire ants. The ants were so mad they were actually biting me so hard they were folding themselves in half. In short order that storm was the least of my worries. I hadn't run that fast since high school. I imagine that was a pretty sight for the neighbors to see ..an ol' fat guy with ascites bouncing all over the place. ...gettin' it ...I was throttled open and was a putting as much yonder between me and those mad fire ants as these legs would let me. Go ahead and laugh everybody else did. Take care CLE Subject: Re: New member intro & questions To: livercirrhosissupport Date: Sunday, August 17, 2008, 1:56 AM You are fortunate to have a place for a garden to witness nature & help you to live in the now. peace & good thoughts > > > 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 How do you get to the photo album section? When I click on the link it takes me to an area to compose a message. On the front page if I click my photos it says I don't have any. Bewildered in Fl.????? Subject: Re: New member intro & questions To: livercirrhosissupport Date: Sunday, August 17, 2008, 1:56 AM You are fortunate to have a place for a garden to witness nature & help you to live in the now. peace & good thoughts > > > 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 from your email page, you click on Yahoo, then click on Groups, then click on this group, then click on Photos. It should take you straight into the photo album. If you have the ability to see the photos, then you have the ability to upload them . 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 On Friday Sharon and I sat down in a small park at the little picnic table. We were an hour early for our shrink appointment. I opened up my laptop to see if I could tether it to the internet with my blackberry,(so far unsuccessful). I noticed a yellow jacket buzzing around my head. Then it landed on my hand. I shook it off, and for 5 minutes it still buzzed around the both of us, and the realization slowly crept in. Before I could yell out " there must be a nest nearby " I got stung HARD in the left side above my breast, near my armpit. I got up and screamed " there has to be a nest " . " run " . as soon as we were a safe distance from the picnic bench, I could see them crawling in and out of a small hole in the frame under the bench, right under where my butt had been parked. I am very very lucky that they were so patient with me, especially after I started swatting them, I could have started them swarming, and I would have gotten mega stung. I don't know if my jaw is hurting from the sting or the thrush. The stupid thrush is still in there. Bobby. PS, chief, I ain't laughing at you, I'm laughing WITH you. 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 Thanks Walking Eagle. I found it. Did you build that tipi? I see why they call you Walking Eagle now. The pic is a little fuzzy but isn't that a Bald Eagle? From: jmcman57 <jmcman57yahoo (DOT) com> Subject: Re: New member intro & questions To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Sunday, August 17, 2008, 1:56 AM You are fortunate to have a place for a garden to witness nature & help you to live in the now. peace & good thoughts > > From: Bob Aragon <robwalkingeagle@ ...> > Subject: Re: New member intro & questions > To: livercirrhosissuppo rtyahoogroups (DOT) 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, Livercirrhosissuppo rt. > > > > 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 Garden " nibblers " indeed. They are beautiful animals. The only thing I have ever had peep in my window was my ex-mother in law which quite frankly was twice as scary. :-) Let me be nice. You guys have fun. Subject: Re: New member intro & questions To: livercirrhosissupport Date: Sunday, August 17, 2008, 1:56 AM You are fortunate to have a place for a garden to witness nature & help you to live in the now. peace & good thoughts > > > 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 Hey CLE, Speaking of storms, are you going to be effected by Tropical Storm/Hurricane Faye? When I was in basic training the TI (Training Instructor) put us in formation and marched us to the Shoppette (small convenient store) on base. We stayed in formation outside as a few were released at a time to go inside. The guy in front of me was standing right on an ant mound. He stood there as long as he could until he just started jumping around. The TI came over and yeld at him for being a dumb ass for standing on an ant mound. LOL! MaC Chief Little Eagle wrote: :-) That garden is a sore spot with me today. I was out there a piddling and a thunderstorm blew up. Lightning like all get out. I figured that I would get as low to the ground as possible so I sat down. I sat right down in a gob of fire ants. The ants were so mad they were actually biting me so hard they were folding themselves in half. In short order that storm was the least of my worries. I hadn't run that fast since high school. I imagine that was a pretty sight for the neighbors to see ..an ol' fat guy with ascites bouncing all over the place. ...gettin' it ...I was throttled open and was a putting as much yonder between me and those mad fire ants as these legs would let me. Go ahead and laugh everybody else did. Take care CLE Subject: Re: New member intro & questions To: livercirrhosissupport Date: Sunday, August 17, 2008, 1:56 AM You are fortunate to have a place for a garden to witness nature & help you to live in the now. peace & good thoughts > > > 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 Little Eagle, you are hilarious!!! I do hope you have made a career of writing. If not, you have missed your calling, my friend! I pray that daughter of yours has some of these stories saved up for future generations. If you haven't written them down for you, you certainly should. I can tell you from experience, they will mean the world to her in years to come. God bless you my exceptionally talented friend! Hugs........ Diane C. from TN > > > > From: Bob Aragon <robwalkingeagle@> > > 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...
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