New member intro & questions

[Guest guest]

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

[Guest guest]

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

[Guest guest]

My mom gets encephalopathy but does not get the hand flapping. Does

that usually always happen with encephalopathy? My mom Gastro. Doc.

Seems to think so.

Stefanie

> >

> > 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

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

My husband has never had the hand flapping (Asterixis is the medical

term) when he is experiencing high ammonia levels.

Our doctor seemed to be surprised but hey, I'm grateful for one

symptom he does not have.

> > >

> > > 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

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >