Re: Porto systemic encephalopathy

[Guest guest]

I am interested in this. They say I do not have cirrrhosis but I have to take

Krystalose for high ammonia. I have been told I have hepatic encephalogy

Subject: Porto systemic encephalopathy

To: " Cirrhosis Support group " <livercirrhosissupport >

Date: Friday, February 12, 2010, 4:28 PM

 

Porto systemic encephalopathy is a mental status change related to liver

disease. The liver disease doesn not need to be cirrhosis, as hepatitis can

cause this to happen as well. The old school says that ammonia is the culprit,

but newer studies seem to suggest that there are many different toxins

responsible for it. It is an scary, sometimes ugly thing to witness and even

more frightening thing to experience. It feels like being very very drunk, and

in a way the person is in fact drunk, because the miriad of toxins causing PSE

mimic alcohol. One recent study supports a type of benzo diazipine that our own

bodies make, but people suffering from liver disease cannot filter out. Benzo

diazipines are a family of drugs including librium, valium and ativan.

It's bad enough for a recovering alcoholic to be struggling to stay clean and

sober only to experience drug abuse without taking a single pill!

I could list all the known toxins but it would not do any good. There are only a

few known treatments for PSE. All have to come from a doctor, and be watched

carefully by a doctor. A patient suffering from mental status change needs to be

seen as an emergency. Calling 911 would not be over dramatic. There are several

stages to this condition, and full comatose is not far from the stage before it.

A person could be slurring thier speech, and go in to a coma in minutes.

One of the earliest manifestations of hepatic encephalopathy is

" day-night reversal. " In other words, affected individuals tend to

sleep during the day and stay awake at night. Another early

manifestation is impairment in spatial perception. This can be made

apparent by noting the patient's poor ability to copy or draw various

simple images, e.g., cube, star, clock. This deficit can also be

demonstrated by administering a test that has the patient connect a

number of randomly-placed dots on a sheet of paper (the " trail test " or

" numbers connecting test " ) There is a connect the numbers test you can download

from our files section. Just click on the file and " save as " .

Here are the 4 stages of PSE-

* Grade 1 - Trivial lack of awareness; Euphoria or anxiety; Shortened

attention span; Impaired performance of addition or subtraction. 67% of

cirrhotic patients may have 'minimal hepatic encephalopathy' .

* Grade 2 - Lethargy or apathy; Minimal disorientation for time or place; Subtle

personality change; Inappropriate behavior.

* Grade 3 - Somnolescence to semistupor, but responsive to verbal stimuli;

Confusion; Gross disorientation

* Grade 4 - Coma(unresponsive to verbal or noxious stimuli)Here is a good link

for this topic

http://en.wikipedia .org/wiki/ Hepatic_encephal opathy

Most of us here who have liver disease are taking lactulose or Crystalose for

the treatment of PSE.

Love, Bobby

[Guest guest]

Bobby, thank you for sharing this. Even after being with Terry as he died

and watching him go through the stages, I could not have differentiated them

so succinctly. I will save this information for my family since I now walk

this road as the patient, not the caregiver. Thanks again, I forget

sometimes what a treasure you are! Luv ya!

On Fri, Feb 12, 2010 at 4:28 PM, Bob Aragon wrote:

>

>

> Porto systemic encephalopathy is a mental status change related to liver

> disease. The liver disease doesn not need to be cirrhosis, as hepatitis can

> cause this to happen as well. The old school says that ammonia is the

> culprit, but newer studies seem to suggest that there are many different

> toxins responsible for it. It is an scary, sometimes ugly thing to witness

> and even more frightening thing to experience. It feels like being very very

> drunk, and in a way the person is in fact drunk, because the miriad of

> toxins causing PSE mimic alcohol. One recent study supports a type of benzo

> diazipine that our own bodies make, but people suffering from liver disease

> cannot filter out. Benzo diazipines are a family of drugs including librium,

> valium and ativan.

>

> It's bad enough for a recovering alcoholic to be struggling to stay clean

> and sober only to experience drug abuse without taking a single pill!

>

> I could list all the known toxins but it would not do any good. There are

> only a few known treatments for PSE. All have to come from a doctor, and be

> watched carefully by a doctor. A patient suffering from mental status change

> needs to be seen as an emergency. Calling 911 would not be over dramatic.

> There are several stages to this condition, and full comatose is not far

> from the stage before it. A person could be slurring thier speech, and go in

> to a coma in minutes.

> One of the earliest manifestations of hepatic encephalopathy is

> " day-night reversal. " In other words, affected individuals tend to

> sleep during the day and stay awake at night. Another early

> manifestation is impairment in spatial perception. This can be made

> apparent by noting the patient's poor ability to copy or draw various

> simple images, e.g., cube, star, clock. This deficit can also be

> demonstrated by administering a test that has the patient connect a

> number of randomly-placed dots on a sheet of paper (the " trail test " or

> " numbers connecting test " ) There is a connect the numbers test you can

> download from our files section. Just click on the file and " save as " .

>

> Here are the 4 stages of PSE-

>

> * Grade 1 - Trivial lack of awareness; Euphoria or anxiety; Shortened

> attention span; Impaired performance of addition or subtraction. 67% of

> cirrhotic patients may have 'minimal hepatic encephalopathy'.

> * Grade 2 - Lethargy or apathy; Minimal disorientation for time or place;

> Subtle personality change; Inappropriate behavior.

> * Grade 3 - Somnolescence to semistupor, but responsive to verbal stimuli;

> Confusion; Gross disorientation

>

> * Grade 4 - Coma(unresponsive to verbal or noxious stimuli)Here is a good

> link for this topic

> http://en.wikipedia.org/wiki/Hepatic_encephalopathy

>

> Most of us here who have liver disease are taking lactulose or Crystalose

> for the treatment of PSE.

>

> Love, Bobby

>

>

[Guest guest]

Bobby, I've been taking Benzodiazapams ( Xanax ) since 1991. I know they aren't

healthy for my liver but of course I can't imagaine living without them since I

can barely live with them ! But I'm having trouble wrapping my mind around what

this is saying about them...Debbie

>

> Porto systemic encephalopathy is a mental status change related to liver

disease. The liver disease doesn not need to be cirrhosis, as hepatitis can

cause this to happen as well. The old school says that ammonia is the culprit,

but newer studies seem to suggest that there are many different toxins

responsible for it. It is an scary, sometimes ugly thing to witness and even

more frightening thing to experience. It feels like being very very drunk, and

in a way the person is in fact drunk, because the miriad of toxins causing PSE

mimic alcohol. One recent study supports a type of benzo diazipine that our own

bodies make, but people suffering from liver disease cannot filter out. Benzo

diazipines are a family of drugs including librium, valium and ativan.

>

> It's bad enough for a recovering alcoholic to be struggling to stay clean and

sober only to experience drug abuse without taking a single pill!

>

> I could list all the known toxins but it would not do any good. There are

only a few known treatments for PSE. All have to come from a doctor, and be

watched carefully by a doctor. A patient suffering from mental status change

needs to be seen as an emergency. Calling 911 would not be over dramatic. There

are several stages to this condition, and full comatose is not far from the

stage before it. A person could be slurring thier speech, and go in to a coma in

minutes.

> One of the earliest manifestations of hepatic encephalopathy is

> " day-night reversal. " In other words, affected individuals tend to

> sleep during the day and stay awake at night. Another early

> manifestation is impairment in spatial perception. This can be made

> apparent by noting the patient's poor ability to copy or draw various

> simple images, e.g., cube, star, clock. This deficit can also be

> demonstrated by administering a test that has the patient connect a

> number of randomly-placed dots on a sheet of paper (the " trail test " or

> " numbers connecting test " ) There is a connect the numbers test you can

download from our files section. Just click on the file and " save as " .

>

> Here are the 4 stages of PSE-

>

> * Grade 1 - Trivial lack of awareness; Euphoria or anxiety; Shortened

> attention span; Impaired performance of addition or subtraction. 67% of

> cirrhotic patients may have 'minimal hepatic encephalopathy'.

> * Grade 2 - Lethargy or apathy; Minimal disorientation for time or place;

Subtle personality change; Inappropriate behavior.

> * Grade 3 - Somnolescence to semistupor, but responsive to verbal stimuli;

Confusion; Gross disorientation

>

> * Grade 4 - Coma(unresponsive to verbal or noxious stimuli)Here is a good

link for this topic

> http://en.wikipedia.org/wiki/Hepatic_encephalopathy

>

> Most of us here who have liver disease are taking lactulose or Crystalose for

the treatment of PSE.

>

> Love, Bobby

>

>

>

>

>

[Guest guest]

Bobby, from what I was able to understand the benzos I'm taking can bring on the

hepatic ecephalopathy. That is scary but I've gone thru withdrawl for the Xanax

and that honestly made the Hep C feel like a walk in the park. SO, I guess I'm

just stuck with them. I know I've become some angry, screeching screw and I

stand back and look at " that " person and wonder where she came from and what she

did with me...Debbie

>

> Porto systemic encephalopathy is a mental status change related to liver

disease. The liver disease doesn not need to be cirrhosis, as hepatitis can

cause this to happen as well. The old school says that ammonia is the culprit,

but newer studies seem to suggest that there are many different toxins

responsible for it. It is an scary, sometimes ugly thing to witness and even

more frightening thing to experience. It feels like being very very drunk, and

in a way the person is in fact drunk, because the miriad of toxins causing PSE

mimic alcohol. One recent study supports a type of benzo diazipine that our own

bodies make, but people suffering from liver disease cannot filter out. Benzo

diazipines are a family of drugs including librium, valium and ativan.

>

> It's bad enough for a recovering alcoholic to be struggling to stay clean and

sober only to experience drug abuse without taking a single pill!

>

> I could list all the known toxins but it would not do any good. There are

only a few known treatments for PSE. All have to come from a doctor, and be

watched carefully by a doctor. A patient suffering from mental status change

needs to be seen as an emergency. Calling 911 would not be over dramatic. There

are several stages to this condition, and full comatose is not far from the

stage before it. A person could be slurring thier speech, and go in to a coma in

minutes.

> One of the earliest manifestations of hepatic encephalopathy is

> " day-night reversal. " In other words, affected individuals tend to

> sleep during the day and stay awake at night. Another early

> manifestation is impairment in spatial perception. This can be made

> apparent by noting the patient's poor ability to copy or draw various

> simple images, e.g., cube, star, clock. This deficit can also be

> demonstrated by administering a test that has the patient connect a

> number of randomly-placed dots on a sheet of paper (the " trail test " or

> " numbers connecting test " ) There is a connect the numbers test you can

download from our files section. Just click on the file and " save as " .

>

> Here are the 4 stages of PSE-

>

> * Grade 1 - Trivial lack of awareness; Euphoria or anxiety; Shortened

> attention span; Impaired performance of addition or subtraction. 67% of

> cirrhotic patients may have 'minimal hepatic encephalopathy'.

> * Grade 2 - Lethargy or apathy; Minimal disorientation for time or place;

Subtle personality change; Inappropriate behavior.

> * Grade 3 - Somnolescence to semistupor, but responsive to verbal stimuli;

Confusion; Gross disorientation

>

> * Grade 4 - Coma(unresponsive to verbal or noxious stimuli)Here is a good

link for this topic

> http://en.wikipedia.org/wiki/Hepatic_encephalopathy

>

> Most of us here who have liver disease are taking lactulose or Crystalose for

the treatment of PSE.

>

> Love, Bobby

>

>

>

>

>

[Guest guest]

I love you, Diane. I hope you are hanging in there. My lawyer was a wealth of

information when I was fighting for SSDI. She could have passed medical boards

by the time my hearing came around. Never before did another human being have

such a well rounded understanding of what I experience on a day to day basis.

She was well worth every penny. I am basically saying that we both had to look

up a lot of stuff to get ready for the hearing...

I am still trying to get used to total memory blackouts and halucinations, and

conversations with people who arent there, or a myriad of strange strange things

I see and hear. My hepatologist discontinued rifaximin and gave me a

prescription for crystalose, which I have yet to try. Are you on lactulose??

Love, Bobby

(saadn'leelt- da ya day- n'zho)

long life, old age, everything good-Apache prayer

________________________________

To: livercirrhosissupport

Sent: Fri, February 12, 2010 3:44:42 PM

Subject: Re: Porto systemic encephalopathy

Bobby, thank you for sharing this. Even after being with Terry as he died

and watching him go through the stages, I could not have differentiated them

so succinctly. I will save this information for my family since I now walk

this road as the patient, not the caregiver. Thanks again, I forget

sometimes what a treasure you are! Luv ya!

On Fri, Feb 12, 2010 at 4:28 PM, Bob Aragon wrote:

>

>

> Porto systemic encephalopathy is a mental status change related to liver

> disease. The liver disease doesn not need to be cirrhosis, as hepatitis can

> cause this to happen as well. The old school says that ammonia is the

> culprit, but newer studies seem to suggest that there are many different

> toxins responsible for it. It is an scary, sometimes ugly thing to witness

> and even more frightening thing to experience. It feels like being very very

> drunk, and in a way the person is in fact drunk, because the miriad of

> toxins causing PSE mimic alcohol. One recent study supports a type of benzo

> diazipine that our own bodies make, but people suffering from liver disease

> cannot filter out. Benzo diazipines are a family of drugs including librium,

> valium and ativan.

>

> It's bad enough for a recovering alcoholic to be struggling to stay clean

> and sober only to experience drug abuse without taking a single pill!

>

> I could list all the known toxins but it would not do any good. There are

> only a few known treatments for PSE. All have to come from a doctor, and be

> watched carefully by a doctor. A patient suffering from mental status change

> needs to be seen as an emergency. Calling 911 would not be over dramatic.

> There are several stages to this condition, and full comatose is not far

> from the stage before it. A person could be slurring thier speech, and go in

> to a coma in minutes.

> One of the earliest manifestations of hepatic encephalopathy is

> " day-night reversal. " In other words, affected individuals tend to

> sleep during the day and stay awake at night. Another early

> manifestation is impairment in spatial perception. This can be made

> apparent by noting the patient's poor ability to copy or draw various

> simple images, e.g., cube, star, clock. This deficit can also be

> demonstrated by administering a test that has the patient connect a

> number of randomly-placed dots on a sheet of paper (the " trail test " or

> " numbers connecting test " ) There is a connect the numbers test you can

> download from our files section. Just click on the file and " save as " .

>

> Here are the 4 stages of PSE-

>

> * Grade 1 - Trivial lack of awareness; Euphoria or anxiety; Shortened

> attention span; Impaired performance of addition or subtraction. 67% of

> cirrhotic patients may have 'minimal hepatic encephalopathy'.

> * Grade 2 - Lethargy or apathy; Minimal disorientation for time or place;

> Subtle personality change; Inappropriate behavior.

> * Grade 3 - Somnolescence to semistupor, but responsive to verbal stimuli;

> Confusion; Gross disorientation

>

> * Grade 4 - Coma(unresponsive to verbal or noxious stimuli)Here is a good

> link for this topic

> http://en.wikipedia.org/wiki/Hepatic_encephalopathy

>

> Most of us here who have liver disease are taking lactulose or Crystalose

> for the treatment of PSE.

>

> Love, Bobby

>

>

[Guest guest]

This is a link to you tube and the test for asterixis, one sign of PSE.

(saadn'leelt- da ya day- n'zho)

long life, old age, everything good-Apache prayer

________________________________

To: livercirrhosissupport

Sent: Fri, February 12, 2010 3:40:31 PM

Subject: Re: Porto systemic encephalopathy

I am interested in this. They say I do not have cirrrhosis but I have to take

Krystalose for high ammonia. I have been told I have hepatic encephalogy

From: Bob Aragon <robwalkingeagle@ yahoo.com>

Subject: Porto systemic encephalopathy

To: " Cirrhosis Support group " <livercirrhosissuppo rtyahoogroups (DOT) com>

Date: Friday, February 12, 2010, 4:28 PM

Porto systemic encephalopathy is a mental status change related to liver

disease. The liver disease doesn not need to be cirrhosis, as hepatitis can

cause this to happen as well. The old school says that ammonia is the culprit,

but newer studies seem to suggest that there are many different toxins

responsible for it. It is an scary, sometimes ugly thing to witness and even

more frightening thing to experience. It feels like being very very drunk, and

in a way the person is in fact drunk, because the miriad of toxins causing PSE

mimic alcohol. One recent study supports a type of benzo diazipine that our own

bodies make, but people suffering from liver disease cannot filter out. Benzo

diazipines are a family of drugs including librium, valium and ativan.

It's bad enough for a recovering alcoholic to be struggling to stay clean and

sober only to experience drug abuse without taking a single pill!

I could list all the known toxins but it would not do any good. There are only a

few known treatments for PSE. All have to come from a doctor, and be watched

carefully by a doctor. A patient suffering from mental status change needs to be

seen as an emergency. Calling 911 would not be over dramatic. There are several

stages to this condition, and full comatose is not far from the stage before it.

A person could be slurring thier speech, and go in to a coma in minutes.

One of the earliest manifestations of hepatic encephalopathy is

" day-night reversal. " In other words, affected individuals tend to

sleep during the day and stay awake at night. Another early

manifestation is impairment in spatial perception. This can be made

apparent by noting the patient's poor ability to copy or draw various

simple images, e.g., cube, star, clock. This deficit can also be

demonstrated by administering a test that has the patient connect a

number of randomly-placed dots on a sheet of paper (the " trail test " or

" numbers connecting test " ) There is a connect the numbers test you can download

from our files section. Just click on the file and " save as " .

Here are the 4 stages of PSE-

* Grade 1 - Trivial lack of awareness; Euphoria or anxiety; Shortened

attention span; Impaired performance of addition or subtraction. 67% of

cirrhotic patients may have 'minimal hepatic encephalopathy' .

* Grade 2 - Lethargy or apathy; Minimal disorientation for time or place; Subtle

personality change; Inappropriate behavior.

* Grade 3 - Somnolescence to semistupor, but responsive to verbal stimuli;

Confusion; Gross disorientation

* Grade 4 - Coma(unresponsive to verbal or noxious stimuli)Here is a good link

for this topic

http://en.wikipedia .org/wiki/ Hepatic_encephal opathy

Most of us here who have liver disease are taking lactulose or Crystalose for

the treatment of PSE.

Love, Bobby

[Guest guest]

Same for me Bobby.  I am still  barely breathing after reading it, welcome the

knowledge.  Thank you .  Lyncia

Thanks for this day and for our tomorrows

 

Love, Lyncia 

 

 

>

>

> Porto systemic encephalopathy is a mental status change related to liver

> disease. The liver disease doesn not need to be cirrhosis, as hepatitis can

> cause this to happen as well. The old school says that ammonia is the

> culprit, but newer studies seem to suggest that there are many different

> toxins responsible for it. It is an scary, sometimes ugly thing to witness

> and even more frightening thing to experience. It feels like being very very

> drunk, and in a way the person is in fact drunk, because the miriad of

> toxins causing PSE mimic alcohol. One recent study supports a type of benzo

> diazipine that our own bodies make, but people suffering from liver disease

> cannot filter out. Benzo diazipines are a family of drugs including librium,

> valium and ativan.

>

> It's bad enough for a recovering alcoholic to be struggling to stay clean

> and sober only to experience drug abuse without taking a single pill!

>

> I could list all the known toxins but it would not do any good. There are

> only a few known treatments for PSE. All have to come from a doctor, and be

> watched carefully by a doctor. A patient suffering from mental status change

> needs to be seen as an emergency. Calling 911 would not be over dramatic.

> There are several stages to this condition, and full comatose is not far

> from the stage before it. A person could be slurring thier speech, and go in

> to a coma in minutes.

> One of the earliest manifestations of hepatic encephalopathy is

> " day-night reversal. " In other words, affected individuals tend to

> sleep during the day and stay awake at night. Another early

> manifestation is impairment in spatial perception. This can be made

> apparent by noting the patient's poor ability to copy or draw various

> simple images, e.g., cube, star, clock. This deficit can also be

> demonstrated by administering a test that has the patient connect a

> number of randomly-placed dots on a sheet of paper (the " trail test " or

> " numbers connecting test " ) There is a connect the numbers test you can

> download from our files section. Just click on the file and " save as " .

>

> Here are the 4 stages of PSE-

>

> * Grade 1 - Trivial lack of awareness; Euphoria or anxiety; Shortened

> attention span; Impaired performance of addition or subtraction. 67% of

> cirrhotic patients may have 'minimal hepatic encephalopathy'.

> * Grade 2 - Lethargy or apathy; Minimal disorientation for time or place;

> Subtle personality change; Inappropriate behavior.

> * Grade 3 - Somnolescence to semistupor, but responsive to verbal stimuli;

> Confusion; Gross disorientation

>

> * Grade 4 - Coma(unresponsive to verbal or noxious stimuli)Here is a good

> link for this topic

> http://en.wikipedia.org/wiki/Hepatic_encephalopathy

>

> Most of us here who have liver disease are taking lactulose or Crystalose

> for the treatment of PSE.

>

> Love, Bobby

>

>

[Guest guest]

Bobby,

 

Here I but in......I have been on kristalose for over 1 1/2 years.

 

Lyncia

Thanks for this day and for our tomorrows

 

Love, Lyncia 

 

 

>

>

> Porto systemic encephalopathy is a mental status change related to liver

> disease. The liver disease doesn not need to be cirrhosis, as hepatitis can

> cause this to happen as well. The old school says that ammonia is the

> culprit, but newer studies seem to suggest that there are many different

> toxins responsible for it. It is an scary, sometimes ugly thing to witness

> and even more frightening thing to experience. It feels like being very very

> drunk, and in a way the person is in fact drunk, because the miriad of

> toxins causing PSE mimic alcohol. One recent study supports a type of benzo

> diazipine that our own bodies make, but people suffering from liver disease

> cannot filter out. Benzo diazipines are a family of drugs including librium,

> valium and ativan.

>

> It's bad enough for a recovering alcoholic to be struggling to stay clean

> and sober only to experience drug abuse without taking a single pill!

>

> I could list all the known toxins but it would not do any good. There are

> only a few known treatments for PSE. All have to come from a doctor, and be

> watched carefully by a doctor. A patient suffering from mental status change

> needs to be seen as an emergency. Calling 911 would not be over dramatic.

> There are several stages to this condition, and full comatose is not far

> from the stage before it. A person could be slurring thier speech, and go in

> to a coma in minutes.

> One of the earliest manifestations of hepatic encephalopathy is

> " day-night reversal. " In other words, affected individuals tend to

> sleep during the day and stay awake at night. Another early

> manifestation is impairment in spatial perception. This can be made

> apparent by noting the patient's poor ability to copy or draw various

> simple images, e.g., cube, star, clock. This deficit can also be

> demonstrated by administering a test that has the patient connect a

> number of randomly-placed dots on a sheet of paper (the " trail test " or

> " numbers connecting test " ) There is a connect the numbers test you can

> download from our files section. Just click on the file and " save as " .

>

> Here are the 4 stages of PSE-

>

> * Grade 1 - Trivial lack of awareness; Euphoria or anxiety; Shortened

> attention span; Impaired performance of addition or subtraction. 67% of

> cirrhotic patients may have 'minimal hepatic encephalopathy' .

> * Grade 2 - Lethargy or apathy; Minimal disorientation for time or place;

> Subtle personality change; Inappropriate behavior.

> * Grade 3 - Somnolescence to semistupor, but responsive to verbal stimuli;

> Confusion; Gross disorientation

>

> * Grade 4 - Coma(unresponsive to verbal or noxious stimuli)Here is a good

> link for this topic

> http://en.wikipedia .org/wiki/ Hepatic_encephal opathy

>

> Most of us here who have liver disease are taking lactulose or Crystalose

> for the treatment of PSE.

>

> Love, Bobby

>

>

[Guest guest]

Actually Bobby, I am at the best place I have been since Terry died.

Getting here has been the most difficult thing I have ever done other than

actually losing Terry. However, I am again happy to be alive and look

forward to each new day and am thankful that I will live to enjoy the

wonders of life at least one more day! Thank you for your concern and love.

No, I am not on anything for encephalopathy as yet. So far, my numbers are

still very low and I haven't suffered the effects very much. I will see my

GI on the 19th and will be scheduled for another endoscopy. I do not have

varices, or at least I didn't at the last endo, but he wants to keep a look

out and has told me I should have the endo's at least every six months.

It's been a little longer than six months, but I had to deal with the other

health issues before I could get into this again.

So, I will have an endo probably before the end of February. My LFTs are

good and so far, so are the other tests. I have not had a MELD calculation

as yet because the doctors feel I am very far from having to worry about

that. If anything should change, they will order all the tests and begin

keeping up with that. My doctor at Vandy did mention on my last visit that

they may need to do a CAT scan of my liver soon because it does feel as

though it may have shrunk some since my last check up. If the endo reveals

any changes in the vessels in my esophegus, I'm sure they will proceed with

the CAT scan as well.

I am so happy that you found such a knowledgable and willling attorney to

fight for you. It makes all the difference when you feel they are really

commited to helping you. So, I assume you got your SSDI then? I'm sorry,

I've been so out of touch, I can't remember if I already know the answer to

this question or not. That is one thing I have noticed, I am more forgetful

than I used to be. It is one of the things I will make sure my GI knows

about at the visit on the 19th. I don't want to bother him with unnecessary

information, but I learned with Terry that everything is important when

you're dealing with this disease.

Thanks again for the great information. I pray you and Sharon are both

doing as well as possible. Love ya man!

On Fri, Feb 12, 2010 at 11:37 PM, Bob Aragon wrote:

>

>

> I love you, Diane. I hope you are hanging in there. My lawyer was a wealth

> of information when I was fighting for SSDI. She could have passed medical

> boards by the time my hearing came around. Never before did another human

> being have such a well rounded understanding of what I experience on a day

> to day basis. She was well worth every penny. I am basically saying that we

> both had to look up a lot of stuff to get ready for the hearing...

>

> I am still trying to get used to total memory blackouts and halucinations,

> and conversations with people who arent there, or a myriad of strange

> strange things I see and hear. My hepatologist discontinued rifaximin and

> gave me a prescription for crystalose, which I have yet to try. Are you on

> lactulose?? Love, Bobby

>

> (saadn'leelt- da ya day- n'zho)

> long life, old age, everything good-Apache prayer

>

> ________________________________

> From: Diane Chandler

<diane.chandler.75@...<diane.chandler.75%40gmail.com>

> >

> To:

livercirrhosissupport <livercirrhosissupport%40yahoogroups.com>

> Sent: Fri, February 12, 2010 3:44:42 PM

> Subject: Re: Porto systemic encephalopathy

>

> Bobby, thank you for sharing this. Even after being with Terry as he died

> and watching him go through the stages, I could not have differentiated

> them

> so succinctly. I will save this information for my family since I now walk

> this road as the patient, not the caregiver. Thanks again, I forget

> sometimes what a treasure you are! Luv ya!

>

> On Fri, Feb 12, 2010 at 4:28 PM, Bob Aragon

<robwalkingeagle@...<robwalkingeagle%40yahoo.com>>wrote:

>

>

>

> >

> >

> > Porto systemic encephalopathy is a mental status change related to liver

> > disease. The liver disease doesn not need to be cirrhosis, as hepatitis

> can

> > cause this to happen as well. The old school says that ammonia is the

> > culprit, but newer studies seem to suggest that there are many different

> > toxins responsible for it. It is an scary, sometimes ugly thing to

> witness

> > and even more frightening thing to experience. It feels like being very

> very

> > drunk, and in a way the person is in fact drunk, because the miriad of

> > toxins causing PSE mimic alcohol. One recent study supports a type of

> benzo

> > diazipine that our own bodies make, but people suffering from liver

> disease

> > cannot filter out. Benzo diazipines are a family of drugs including

> librium,

> > valium and ativan.

> >

> > It's bad enough for a recovering alcoholic to be struggling to stay clean

> > and sober only to experience drug abuse without taking a single pill!

> >

> > I could list all the known toxins but it would not do any good. There are

> > only a few known treatments for PSE. All have to come from a doctor, and

> be

> > watched carefully by a doctor. A patient suffering from mental status

> change

> > needs to be seen as an emergency. Calling 911 would not be over dramatic.

> > There are several stages to this condition, and full comatose is not far

> > from the stage before it. A person could be slurring thier speech, and go

> in

> > to a coma in minutes.

> > One of the earliest manifestations of hepatic encephalopathy is

> > " day-night reversal. " In other words, affected individuals tend to

> > sleep during the day and stay awake at night. Another early

> > manifestation is impairment in spatial perception. This can be made

> > apparent by noting the patient's poor ability to copy or draw various

> > simple images, e.g., cube, star, clock. This deficit can also be

> > demonstrated by administering a test that has the patient connect a

> > number of randomly-placed dots on a sheet of paper (the " trail test " or

> > " numbers connecting test " ) There is a connect the numbers test you can

> > download from our files section. Just click on the file and " save as " .

> >

> > Here are the 4 stages of PSE-

> >

> > * Grade 1 - Trivial lack of awareness; Euphoria or anxiety; Shortened

> > attention span; Impaired performance of addition or subtraction. 67% of

> > cirrhotic patients may have 'minimal hepatic encephalopathy'.

> > * Grade 2 - Lethargy or apathy; Minimal disorientation for time or place;

> > Subtle personality change; Inappropriate behavior.

> > * Grade 3 - Somnolescence to semistupor, but responsive to verbal

> stimuli;

> > Confusion; Gross disorientation

> >

> > * Grade 4 - Coma(unresponsive to verbal or noxious stimuli)Here is a good

> > link for this topic

> > http://en.wikipedia.org/wiki/Hepatic_encephalopathy

> >

> > Most of us here who have liver disease are taking lactulose or Crystalose

> > for the treatment of PSE.

> >

> > Love, Bobby

> >

> >