Re: Re: Confusion

[Guest guest]

I think that the moral of your story, at least to me, means to be ready to have

a prescriptionwhen I realize signs of the confusion.  Mind you, it is so

frustrating that it takes so much longer to do what I used to be able to do

almost in my sleep.  Someone told me that Lactulose is still prescription in

the US and yet I can just walk over and pick it up.  But,would have to check

with my Dr or Pharmacist to find out whether the Xifaxin is accepted up here.

It would seem also, as a musician, going into confusion would make playing very

difficult.  Do you also sing??

 

sounds like ammonia build up. i had the same problem, took the same dose of

Lactulose everyday your husband takes. i started taking Xifaxin, which is no

longer experimental and covered by all insurance companies and Medicare. if its

NOT covered by your insurance, tell your doctor to find out about it and then to

insist the imsurance company pay for it. if that doesnt work, try Neomycin.

thats not as highly recommended due to its severe side effects (it will cause

BAD tinnitus and damage your kidneys quickly). i used to be in the hospital

every 2 or 3 weeks with ammonia buildup (caused by too much protein not clearing

the system) and now have not had a recurrence in over a year. thats correct, im

focused, clear, and aware.

i went into hyper ammonia coma while on the road, on a tour bus (im a musician)

several states away. when i awoke in a hospital, i couldt remember my name, nor

could i remember where i lived or where i was.

scary stuff, ammonia. Xifaxin 550, 2x daily saved my butt. im OK again.

kip

[Guest guest]

Hi Bonnie:  I'm wondering if it's possible to get him admitted to the

transplant center when his ammonia is high so often.  I had a similar situation

with my husband.  His ammonia kept going up a few weeks prior to his scheduled

scan.  I called the ambulance and rushed him to the local hospital where they

stabilized him.  I had them contact the transplant center and he was

transported the next morning to the transplant center.  As soon as we got there

the drs knew immediately what to do.  Due to elevated ammonia his swallowing

mechanism was unable to function, thus I couldn't get his lactulose into him. 

The local hospital thought it was something wrong with his epiglottis, the

swallowing muscle.  It seems to me that a regular hospital just doesn't

understand the dynamics of liver disease and the elevated ammonia that goes

along with it.  The drs at the transplant center went to work on him

immediately and ordered lactulose enemas to remove the

excess ammonia from his system.  Two days later he was once again able to

swallow.  A month later he received the Gift of Life; his new liver.  That was

two years ago and he is doing fine today.  God bless!  Let me know if there is

anything else I can do or say to encourage you.  With love, Jackie

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Thursday, June 14, 2012 6:06 AM

Subject: Re: Confusion

 

 Thank you so much for the info on xifaxin 550. I will contact his provider on

this for sure. Yesterday he had high ammonia levels again it seems like its

happening once a week and of course I take him to the hospital and they look at

me like how did this happen? DA you tell me! Yesterday it was 12:30 am when I

was woken up and this time he was angry which never happened before. He wandered

around aimlessly and then went to clean the water just really off the wall stuff

he thought he was doing and then said he was going to destroy everything then

last night he didn't remember a thing and he feels so bad. He is on dialysis as

well. We were suppose to be in Vegas for his st scan needed for the transplant 

and this is the 3rd time we missed due to ammonia levels. Pray we make it next

week.

Thanks again

Bonnie 

[Guest guest]

That's the right kind of attitude!!  Yes, don't we all finally have to realize

that being on top is no longer our goal.  My son even knows at the 33, that his

dreams of playing in a band will likely only be the weekend warriors.

Funny, I just thought the other day!  After all the huge fame that Garth

had for years before he took some time off.  Now I'll bet even he is struggling

to get his name out there again.  Tritt!!  He was a special favorite of

mine and look what happened to him.  I don't think it's a career for the faint

hearted.  That's what I've always told my son.  He would need to focus on that

one thing and never deter from that rut.  Also, my boy get very focused on

onetype of music and doesn't see the value of listening to other really good

entertainers.  For about 25 years, it was country for hubby and I.  In this

past 9 months, 99% of the time, the only thing playing now is Yanni!!  It makes

me feel very serene and peaceful.  Truly, it has been a huge reason that I can

stay calm even though I'm terminal.

We had a friend that was from Newfoundland (east coast of Canada).  He had a

very nice voice and had some notoriety on the east coast.  Well, his day came

and he was asked to come down to Nashville.  The idiot was handed a big chunk

of a particular drug.  He figured he'd never get it through customs, so he'd

better eat it all.  By the time that he came to - he was somewhere in

Minnesota.  Finally he made it down to whomever wanted to see what he had. 

But, I think that falling out of the limo, dead drunk really doesn't impress

anyone unless you've already got the fame.

 

yes, i also sing. remembering lyrics and complex harmony parts was difficult. i

was fired from my last two bands because i just couldnt keep up. im well now,

and ready to play more music, but if your off the grid here in Nashville for

more than a year, you pretty much have to start all over, and im at an age where

im running out of that desperate need for fame. i met all my goals, and i no

longer obsess about being the Big Dog anymore, so, hungrier players have moved

in to take my place. thats fine. at least im alive!

kip

[Guest guest]

This must be very difficult for the caregiver!  At least you know what is

causing him to be loopy or angry.

If possible, why don't you go to Vegas as soon as hubby is able to travel after

this episode.  That way he will be right there to look after the ammonia as

well.

The more I read what everyone says, the less confidentI get about staying at

home for as long as possible.  It's so confusing because I don't want to linger

in the hospital either.  Have a feeling that the answer is not mine to make

anyway.

________________________________

 

 Thank you so much for the info on xifaxin 550. I will contact his provider on

this for sure. Yesterday he had high ammonia levels again it seems like its

happening once a week and of course I take him to the hospital and they look at

me like how did this happen? DA you tell me! Yesterday it was 12:30 am when I

was woken up and this time he was angry which never happened before. He wandered

around aimlessly and then went to clean the water just really off the wall stuff

he thought he was doing and then said he was going to destroy everything then

last night he didn't remember a thing and he feels so bad. He is on dialysis as

well. We were suppose to be in Vegas for his st scan needed for the transplant 

and this is the 3rd time we missed due to ammonia levels. Pray we make it next

week.

Thanks again

Bonnie 

[Guest guest]

When I was first diagnosed, one of the first things my pcp said to me

was " You have to guit drinking " I said " No problem " , " No I mean it,

you have to quit drinking " I again said " No problem, I very seldom

have a drink " When a dr. says something stupid like that, tell them

that the highest cause of cirrhosis today is Hep C. In my case, they

don't know what causes it, a number of possiblities including

genetics. Coming from that situation, made me wonder if some of the

people who are told their cirrhosis is from drinking, would have

actually gotten cirrhosis if they never had a drink in their life,

they could be genetically predisposed to liver problems, not treat or

undertreated for a thyroid condition or a number of other things. But

since cirrhosis is an alcoholic's drink, their first thought is that

it is caused by alcohol consumption. Don't get me wrong, I am not

advocating drinking to the point of becoming an alcoholic and with the

problems caused by drinking behavior wise, it is probably best not to

have that first drink. But people shouldn't be stigmatized by a

disease. Jan

On Sun, Jun 17, 2012 at 5:34 AM, Bonnie Randklev

wrote:

>

>

>

>

>

> The VA schedules all of his appts so this week we are having him take full

doses of lactulose every 5-6 hrs so we can make it to Vegas. At least I pray

this works. Dr wouldn't give him. I am getting upset with these Dr's always

asking how he got cirrhosis, what difference does it make now? he has it. I mean

do they ask how did you get cancer or other illnesses? I understand the primary

and transplant team and they said it was undefined so why er Drs have say he

must have drank to much. You know what he's sick and most Dr's don't have a clue

on liver disease and nurses , aids etc none of their business!  Just venting

today.

>

>

[Guest guest]

My 1st specialist told me that likely thousands of people were wrongly diagnosed

for well - all of mankind, I quess!!

People who ASSUME anything are ignorant.  Makes it that much worse if it's a

Dr.  It's time for them to get a refresher course I think.  Also, it's long

past being stigmatized because of Hep C.  The majority of people that suffer

the virus, really don't know how they were infected. 

 

Also, there is NASH disease and a whole lot of other things that could put

someone in jeopardy for cirrhosis besides alcohol.  I actually believe that I

came into contact with Hep C just when I was quitting the booze.  But, I have

no doubt that I already had a comprimised liver and the Hep C just fed on it. 

 

I wish there was a way to make the public and Doctors understand.  Yes, I've

heard that it is proposed that an advisory will go out that all baby boomers be

checked.  So, does that mean that the X generation or today's generation are

considered healthy??  They should be talking to the newest group finding their

way to support groups.  Their only in their 20's.  Also, there have been cases

where no one in the family, had any hint of hepatitis, until the baby was

diagnosed.  Then the baby's mother and it started with the grandmother!!!

 

To me it's criminal that our government and health agencies don't study up on

the disease.  When it's being passed to the 3rd generation!!  Besides, I have

read an article that said that Hep C has been around forever.  So why do the

baby boomers get blamed.  We didn't do it!!

 

________________________________

 

When I was first diagnosed, one of the first things my pcp said to me

was " You have to guit drinking " I said " No problem " , " No I mean it,

you have to quit drinking " I again said " No problem, I very seldom

have a drink " When a dr. says something stupid like that, tell them

that the highest cause of cirrhosis today is Hep C. In my case, they

don't know what causes it, a number of possiblities including

genetics. Coming from that situation, made me wonder if some of the

people who are told their cirrhosis is from drinking, would have

actually gotten cirrhosis if they never had a drink in their life,

they could be genetically predisposed to liver problems, not treat or

undertreated for a thyroid condition or a number of other things. But

since cirrhosis is an alcoholic's drink, their first thought is that

it is caused by alcohol consumption. Don't get me wrong, I am not

advocating drinking to the point of becoming an alcoholic and with the

problems caused by drinking behavior wise, it is probably best not to

have that first drink. But people shouldn't be stigmatized by a

disease. Jan

On Sun, Jun 17, 2012 at 5:34 AM, Bonnie Randklev

wrote:

>

>

>

>

>

> The VA schedules all of his appts so this week we are having him take full

doses of lactulose every 5-6 hrs so we can make it to Vegas. At least I pray

this works. Dr wouldn't give him. I am getting upset with these Dr's always

asking how he got cirrhosis, what difference does it make now? he has it. I mean

do they ask how did you get cancer or other illnesses? I understand the primary

and transplant team and they said it was undefined so why er Drs have say he

must have drank to much. You know what he's sick and most Dr's don't have a

clue on liver disease and nurses , aids etc none of their business!  Just

venting today.

>

>

[Guest guest]

all of this is true thats just like you have chest pain or cough 1st thing they

ask do smoke what does that matter your sick now.i did get my cirrhosis from

dranking i don't have to be reminded everytime someone ask how i got it.i have

to live with that pain on my own everyday i am sick.or i tell some about the

cirrhosis and they automaticilly thank i have hep c and i don't even if i did

its not there bussiness. well guess i vented anough for now.

 

take care

bev,tx

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Saturday, June 23, 2012 10:58 PM

Subject: Re: Re: Confusion

 

My 1st specialist told me that likely thousands of people were wrongly diagnosed

for well - all of mankind, I quess!!

People who ASSUME anything are ignorant.  Makes it that much worse if it's a

Dr.  It's time for them to get a refresher course I think.  Also, it's long

past being stigmatized because of Hep C.  The majority of people that suffer

the virus, really don't know how they were infected. 

 

Also, there is NASH disease and a whole lot of other things that could put

someone in jeopardy for cirrhosis besides alcohol.  I actually believe that I

came into contact with Hep C just when I was quitting the booze.  But, I have

no doubt that I already had a comprimised liver and the Hep C just fed on it. 

 

I wish there was a way to make the public and Doctors understand.  Yes, I've

heard that it is proposed that an advisory will go out that all baby boomers be

checked.  So, does that mean that the X generation or today's generation are

considered healthy??  They should be talking to the newest group finding their

way to support groups.  Their only in their 20's.  Also, there have been cases

where no one in the family, had any hint of hepatitis, until the baby was

diagnosed.  Then the baby's mother and it started with the grandmother!!!

 

To me it's criminal that our government and health agencies don't study up on

the disease.  When it's being passed to the 3rd generation!!  Besides, I have

read an article that said that Hep C has been around forever.  So why do the

baby boomers get blamed.  We didn't do it!!

 

________________________________

 

When I was first diagnosed, one of the first things my pcp said to me

was " You have to guit drinking " I said " No problem " , " No I mean it,

you have to quit drinking " I again said " No problem, I very seldom

have a drink " When a dr. says something stupid like that, tell them

that the highest cause of cirrhosis today is Hep C. In my case, they

don't know what causes it, a number of possiblities including

genetics. Coming from that situation, made me wonder if some of the

people who are told their cirrhosis is from drinking, would have

actually gotten cirrhosis if they never had a drink in their life,

they could be genetically predisposed to liver problems, not treat or

undertreated for a thyroid condition or a number of other things. But

since cirrhosis is an alcoholic's drink, their first thought is that

it is caused by alcohol consumption. Don't get me wrong, I am not

advocating drinking to the point of becoming an alcoholic and with the

problems caused by drinking behavior wise, it is probably best not to

have that first drink. But people shouldn't be stigmatized by a

disease. Jan

On Sun, Jun 17, 2012 at 5:34 AM, Bonnie Randklev

<mailto:bonnierandklev%40yahoo.com> wrote:

>

>

>

>

>

> The VA schedules all of his appts so this week we are having him take full

doses of lactulose every 5-6 hrs so we can make it to Vegas. At least I pray

this works. Dr wouldn't give him. I am getting upset with these Dr's always

asking how he got cirrhosis, what difference does it make now? he has it. I mean

do they ask how did you get cancer or other illnesses? I understand the primary

and transplant team and they said it was undefined so why er Drs have say he

must have drank to much. You know what he's sick and most Dr's don't have a

clue on liver disease and nurses , aids etc none of their business!  Just

venting today.

>

>

[Guest guest]

yes i know what you are going through, there are some sorry ass doctors

out there' i am so glad that you came to the right conclusion about

hepc....i dont drink, drugs any of that and yet i got cirhosis, every

six months labs labs labs, and yet the doctors tell you there is noten

they can do except wait for you to get sick, how damn silly is that,

you are telling me after i get ready to die, then you are going to do

something...when you look closely at the money they are paid for

treating patients it makes you wonder... what the hell is happening....

i believe more soul could be saved if only the doctors would just

listen to the patients.... instead any other sickness you got , they

put it on hepc.....i got gasto reflex, one doctor told me they couldnt

give me no pain meds for stomach problems because of the liver issues,

so i ask what the hell was i suppose to do about hurting, there is

noten we can give you at this point;;;it crazy " this is what i think we

all should do, do our own research and go to the nearest doctor that

will listen to us and do all he can to help... i am getting sick and

tired of these damn money grabber, they are not worried about your

health no more than to tell you, wait until you are on death door than

we can help you.... alright i am through ranting..... i just hope you

guys get my point, BEV, HAS A VALID POINT AND I AM TOTALLY WITH

HER...ON THIS ONE......TOMMIE

..

Re: Re: Confusion

 

My 1st specialist told me that likely thousands of people were wrongly

diagnosed for well - all of mankind, I quess!!

People who ASSUME anything are ignorant.  Makes it that much worse if

it's a Dr.  It's time for them to get a refresher course I think. 

Also, it's long past being stigmatized because of Hep C.  The majority

of people that suffer the virus, really don't know how they were

infected. 

 

Also, there is NASH disease and a whole lot of other things that could

put someone in jeopardy for cirrhosis besides alcohol.  I actually

believe that I came into contact with Hep C just when I was quitting

the booze.  But, I have no doubt that I already had a comprimised liver

and the Hep C just fed on it. 

 

I wish there was a way to make the public and Doctors understand.  Yes,

I've heard that it is proposed that an advisory will go out that all

baby boomers be checked.  So, does that mean that the X generation or

today's generation are considered healthy??  They should be talking to

the newest group finding their way to support groups.  Their only in

their 20's.  Also, there have been cases where no one in the family,

had any hint of hepatitis, until the baby was diagnosed.  Then the

baby's mother and it started with the grandmother!!!

 

To me it's criminal that our government and health agencies don't study

up on the disease.  When it's being passed to the 3rd generation!! 

Besides, I have read an article that said that Hep C has been around

forever.  So why do the baby boomers get blamed.  We didn't do it!!

 

________________________________

 

When I was first diagnosed, one of the first things my pcp said to me

was " You have to guit drinking " I said " No problem " , " No I mean it,

you have to quit drinking " I again said " No problem, I very seldom

have a drink " When a dr. says something stupid like that, tell them

that the highest cause of cirrhosis today is Hep C. In my case, they

don't know what causes it, a number of possiblities including

genetics. Coming from that situation, made me wonder if some of the

people who are told their cirrhosis is from drinking, would have

actually gotten cirrhosis if they never had a drink in their life,

they could be genetically predisposed to liver problems, not treat or

undertreated for a thyroid condition or a number of other things. But

since cirrhosis is an alcoholic's drink, their first thought is that

it is caused by alcohol consumption. Don't get me wrong, I am not

advocating drinking to the point of becoming an alcoholic and with the

problems caused by drinking behavior wise, it is probably best not to

have that first drink. But people shouldn't be stigmatized by a

disease. Jan

On Sun, Jun 17, 2012 at 5:34 AM, Bonnie Randklev

& lt;mailto:bonnierandklev%40yahoo.com & gt; wrote:

& gt;

& gt;

& gt;

& gt;

& gt;

& gt; The VA schedules all of his appts so this week we are having him

take full doses of lactulose every 5-6 hrs so we can make it to Vegas.

At least I pray this works. Dr wouldn't give him. I am getting upset

with these Dr's always asking how he got cirrhosis, what difference

does it make now? he has it. I mean do they ask how did you get cancer

or other illnesses? I understand the primary and transplant team and

they said it was undefined so why er Drs have say he must have drank to

much. You know what he's sick and most Dr's don't have a clue on liver

disease and nurses , aids etc none of their business!  Just venting

today.

& gt;

& gt;

[Guest guest]

Bev

If you have cirrhosis from drinking - then you would have to have been a piss

tank like I was.  It was a contributing factor for my liver failing so badly in

a reasonably short time.  However, definitely the Hep C did the most damage. 

I was about 15 yrs sober when I first out and 18 yrs when I tried the 1st

treatment.  Yet, I know that I wouldn't care one iota what caused another liver

to get sick.  I have never been the type that thought I had the right to judge

another unless I'd walked in their moccasins.

Why do any of us feel that we have to tell anyone how we " think " our livers got

so bad??  I'm sure cancer patients are not asked why they got it!!!  It's a

personal thing and should not make any difference to the suffering.  I don't

care if a person picked up liver disease as a result of IV Drugs, alcohol, Hep C

or genetics.  It's a horrible thing to live with, especially with all the

ignorant misunderstandings and stigmatization, still out there.  You know, I

know a lot of ex IV Drug users and yet, if they actually stayed away from

drinking like a fish, their brush with Hep C, seems to go away on it's own.  In

my opinion, the biggest factor for any of us, is that drunks are away more

likely to go to the chronic level.

I am fortunate that I have never had a Dr, his/her staff, lab people or any in

any other place like that, to make their judgements known to me.   However, I

will be right upfront with anybody about this very sick liver and not give them

the time to make guesses. 

Gloria

 

all of this is true thats just like you have chest pain or cough 1st thing they

ask do smoke what does that matter your sick now.i did get my cirrhosis from

dranking i don't have to be reminded everytime someone ask how i got it.i have

to live with that pain on my own everyday i am sick.or i tell some about the

cirrhosis and they automaticilly thank i have hep c and i don't even if i did

its not there bussiness. well guess i vented anough for now.

 

take care

bev,tx

 

My 1st specialist told me that likely thousands of people were wrongly diagnosed

for well - all of mankind, I quess!!

People who ASSUME anything are ignorant.  Makes it that much worse if it's a

Dr.  It's time for them to get a refresher course I think.  Also, it's long

past being stigmatized because of Hep C.  The majority of people that suffer

the virus, really don't know how they were infected. 

 

Also, there is NASH disease and a whole lot of other things that could put

someone in jeopardy for cirrhosis besides alcohol.  I actually believe that I

came into contact with Hep C just when I was quitting the booze.  But, I have

no doubt that I already had a comprimised liver and the Hep C just fed on it. 

 

I wish there was a way to make the public and Doctors understand.  Yes, I've

heard that it is proposed that an advisory will go out that all baby boomers be

checked.  So, does that mean that the X generation or today's generation are

considered healthy??  They should be talking to the newest group finding their

way to support groups.  Their only in their 20's.  Also, there have been cases

where no one in the family, had any hint of hepatitis, until the baby was

diagnosed.  Then the baby's mother and it started with the grandmother!!!

 

To me it's criminal that our government and health agencies don't study up on

the disease.  When it's being passed to the 3rd generation!!  Besides, I have

read an article that said that Hep C has been around forever.  So why do the

baby boomers get blamed.  We didn't do it!!

 

________________________________

 

When I was first diagnosed, one of the first things my pcp said to me

was " You have to guit drinking " I said " No problem " , " No I mean it,

you have to quit drinking " I again said " No problem, I very seldom

have a drink " When a dr. says something stupid like that, tell them

that the highest cause of cirrhosis today is Hep C. In my case, they

don't know what causes it, a number of possiblities including

genetics. Coming from that situation, made me wonder if some of the

people who are told their cirrhosis is from drinking, would have

actually gotten cirrhosis if they never had a drink in their life,

they could be genetically predisposed to liver problems, not treat or

undertreated for a thyroid condition or a number of other things. But

since cirrhosis is an alcoholic's drink, their first thought is that

it is caused by alcohol consumption. Don't get me wrong, I am not

advocating drinking to the point of becoming an alcoholic and with the

problems caused by drinking behavior wise, it is probably best not to

have that first drink. But people shouldn't be stigmatized by a

disease. Jan

On Sun, Jun 17, 2012 at 5:34 AM, Bonnie Randklev

<mailto:bonnierandklev%40yahoo.com> wrote:

>

>

>

>

>

> The VA schedules all of his appts so this week we are having him take full

doses of lactulose every 5-6 hrs so we can make it to Vegas. At least I pray

this works. Dr wouldn't give him. I am getting upset with these Dr's always

asking how he got cirrhosis, what difference does it make now? he has it. I mean

do they ask how did you get cancer or other illnesses? I understand the primary

and transplant team and they said it was undefined so why er Drs have say he

must have drank to much. You know what he's sick and most Dr's don't have a

clue on liver disease and nurses , aids etc none of their business!  Just

venting today.

>

>