Re: need to vent-AASLD guidlines

August 27, 2010

This is a direct quote, cut and pasted from the PDF I posted which is found in

our files section. I cut and pasted it so people can see verbatim what the AASLD

guidlines are, as ther is always so much DISINFORMATION out there, especially by

doctors who are not hepatologists:

Recommendations

1. Patients with cirrhosis should be referred for

transplantation when they develop evidence of hepatic

dysfunction (CTP > 7 and MELD > 10) or when they

experience their first major complication (ascites,

variceal bleeding, or hepatic encephalopathy) (II-3).

2. Children with chronic liver disease should be

referred when they deviate from normal growth curves

or develop evidence of hepatic dysfunction or portal

hypertension (II-3).

3. Patients with type I hepatorenal syndrome

should have an expedited referral for liver transplantation

(II-3).

love, Bobby

________________________________

To: livercirrhosissupport

Sent: Fri, August 27, 2010 4:05:38 AM

Subject: Re: need to vent

Is this doc at a transplant center? if not, dont believe him. If he is, you

might want to ask why the AASLD recommendations are for 10 and over, and why

your loved one cant get on at 10? There is ample evidence that the earlier the

transplantation, the better the outcome. Love, Bobby

________________________________

To: livercirrhosissupport

Sent: Thu, August 26, 2010 5:54:04 PM

Subject: Re: need to vent

Mike, thanks for the info. He is not on transplant list yet. His MELD rate is

14, doc says 16 is when u get on the list. He is very tired, sleeping a lot. He

also has Hep C. He applied for ss. But he seems like he is just kinda giving

up. Laying around on the couch, then to the bed, I heard that if he has Hep C

the cirrohsis will progress quicker. Is that true. Im trying to get as much

info as possible, like what to expect and how long does this go on.? Thanks.

Bonnie

________________________________

To: livercirrhosissupport

Sent: Wed, August 25, 2010 10:41:46 PM

Subject: Re: need to vent

Bonnie,

He will remain tired and sleep most the time. He will if not already have major

mood swings, he might jerk and twitch when sleeping. He will be confused alot,

make sure he keeps up the lactuloce, this will keep him focused. He will be

taking a crud load of meds.,

Is he already on the transplant list? You need to stay strong stay in there with

him. After he recieves his transplant everything will return to normal or you

will see a new man. I had the transplant 4 years ago and I am doing very well.

If you have any questions what so ever please ask. Thats what we are here for.

Best of luck

Mike

Subject: Re: need to vent

To: livercirrhosissupport

Date: Wednesday, August 25, 2010, 8:00 PM

Hi everyone, I am glad to find this group and unsure how to navigate it.

Hopefully u all can give me some insight. My husband was admitted to the

hospital for 4 days in July. He was told prior to this that he has cirhossis

and Hepatitis C. His enzymes are up and down. His liver specialist said that

even though he isnt drinking, they will fluctuate. His white cells and

platelets are very low. Too low for the interferon and ribo shots. He is

using lactulose for the ammonia levels. they were at 77 while in the hospital

and 3 weeks ago his ammonia was 156. Last week they were at 66. He is so

tired all the time, he sleeps so much. His liver specialist said that a med

rate of 16 he would need a liver transplant. His med rate is 14. He has

applied for disability. What should I expect.? Hes had an ultrasound, all of

the labs, and x rays. we are waiting on the results. In any case we were very

stunned by the news that he is almost at the point of a liver transplant. Can

someone tell me some of the symptoms, outcomes, prognosis (which i realize is

different in each case) will he be tired like this all the time. He is 54 years

old. It doesnt seem like anything can be done, except control the side effects,

like leg swelling and infection. any input would be appreciate. Thanks Bonnie

________________________________

To: livercirrhosissupport

Sent: Tue, August 24, 2010 9:53:54 PM

Subject: Re: need to vent

yes roller coater ride puts it mildly girl!!!!!

> > >

> > > > this will sound crazy so if you want to skip reading i wont mind. i am

> > > > pissed, bobby glenns not been feeling well calling dr. tommorrow want

> > scan

> > > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i

> > fed

> > > > him and skyler the grandson living with us, i found his empty glass of

> > in

> > > > the frige instesd of the sink today. he thought it was friday our

> > > > grandaughters birthday but its sunday, we went to her party he doesnt

> > > > remeber it. like i said i am pissed or call it scared what ever it is i

> > am

> > > > it. my newest grandbaby conts. to do good then bad....to be expected

> > for a

> > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out

> > ...hes

> > > > a boy and for some reason its different than the girls...hes in time

> > out

> > > > right now....am i to hard on him...or is he to stubborn i dont know.

> > the

> > > > tears rolling down my face says it all. i am tired but i have to cont.

> > on i

> > > > have no choice in any of this. if i had my choice i would be at the

> > ocean

> > > > watching the waves lap the shore...eating at cock of the walk with

> > elsie and

> > > > roger...but i have no choice. i am here i am mad i am confused i am

> > > > ....??????? really makes me want a glass of wine, but i live to far

> > from

> > > > town and its sunday and i cant get any lol. whys life so messed

> > up...what

> > > > did i do to deserve all this crap???? should i walk away and tell them

> > all

> > > > do it yourself??? should i just suck it up ,drink water and drive on

> > soldier

> > > > ???? i know this is my life, for whatever reason these are the cards

> > dealt

> > > > to me, and i will find away to stand. but right now i am pissy i am sad

> > i

> > > > miss my life the way it was. i am sorry but if i told anyone in my

> > family

> > > > the way i feel they would blame me for enabling everyone. you all and

> > > > elsie...aka mae mae are they only ones i have to vent to that dont

> > sugarcoat

> > > > the facts or blow smoke up my butt. i love you all and just needed to

> > get

> > > > this off my chest cause i have been one angry chick all week cause i

> > dont

> > > > know where these feelings are supposed to go. i am angry with the sick

> > ones

> > > > the stupid ones and the ones who just dont give a crap. i wanna lay in

> > the

> > > > sun with a glass of something...even water lol. in my hand soaking up

> > the

> > > > rays, without a care in the world....but life wont let me. who wouldnt

> > be

> > > > pissed. sorry if i have offended anyone...welcome to barbys world its

> > me

> > > > against all of them.... when will it be my turn? i know that sounds

> > selfish

> > > > but i feel selfish right now. whats god...the universe trying to tell

> > me?

> > > > well just spit it out already i will do what i need to but i am tired

> > for

> > > > crying out loud!!

> > > >

> > > > ------------------------------------

> > > >

> > > > Group Email: livercirrhosissupport

> > > > web address:

> > > > http://groups.yahoo.com/group/livercirrhosissupport/

> > > >

August 27, 2010

Bobby, is hepato renal syndrome when thr kidneys start going too? Jan

On Fri, Aug 27, 2010 at 4:14 AM, Bob Aragon wrote:

> This is a direct quote, cut and pasted from the PDF I posted which is found

> in

> our files section. I cut and pasted it so people can see verbatim what the

> AASLD

> guidlines are, as ther is always so much DISINFORMATION out there,

> especially by

> doctors who are not hepatologists:

>

> Recommendations

> 1. Patients with cirrhosis should be referred for

> transplantation when they develop evidence of hepatic

> dysfunction (CTP > 7 and MELD > 10) or when they

> experience their first major complication (ascites,

> variceal bleeding, or hepatic encephalopathy) (II-3).

> 2. Children with chronic liver disease should be

> referred when they deviate from normal growth curves

> or develop evidence of hepatic dysfunction or portal

> hypertension (II-3).

> 3. Patients with type I hepatorenal syndrome

> should have an expedited referral for liver transplantation

> (II-3).

>

> love, Bobby

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Fri, August 27, 2010 4:05:38 AM

> Subject: Re: need to vent

>

> Is this doc at a transplant center? if not, dont believe him. If he is, you

> might want to ask why the AASLD recommendations are for 10 and over, and

> why

> your loved one cant get on at 10? There is ample evidence that the earlier

> the

> transplantation, the better the outcome. Love, Bobby

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Thu, August 26, 2010 5:54:04 PM

> Subject: Re: need to vent

>

> Mike, thanks for the info. He is not on transplant list yet. His MELD rate

> is

> 14, doc says 16 is when u get on the list. He is very tired, sleeping a

> lot. He

>

> also has Hep C. He applied for ss. But he seems like he is just kinda

> giving

> up. Laying around on the couch, then to the bed, I heard that if he has Hep

> C

> the cirrohsis will progress quicker. Is that true. Im trying to get as

> much

> info as possible, like what to expect and how long does this go on.?

> Thanks.

> Bonnie

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Wed, August 25, 2010 10:41:46 PM

> Subject: Re: need to vent

>

> Bonnie,

> He will remain tired and sleep most the time. He will if not already have

> major

> mood swings, he might jerk and twitch when sleeping. He will be confused

> alot,

> make sure he keeps up the lactuloce, this will keep him focused. He will be

> taking a crud load of meds.,

> Is he already on the transplant list? You need to stay strong stay in there

> with

>

> him. After he recieves his transplant everything will return to normal or

> you

> will see a new man. I had the transplant 4 years ago and I am doing very

> well.

> If you have any questions what so ever please ask. Thats what we are here

> for.

> Best of luck

> Mike

>

> Subject: Re: need to vent

> To: livercirrhosissupport

> Date: Wednesday, August 25, 2010, 8:00 PM

>

> Hi everyone, I am glad to find this group and unsure how to navigate it.

> Hopefully u all can give me some insight. My husband was admitted to the

> hospital for 4 days in July. He was told prior to this that he has

> cirhossis

> and Hepatitis C. His enzymes are up and down. His liver specialist said

> that

> even though he isnt drinking, they will fluctuate. His white cells and

> platelets are very low. Too low for the interferon and ribo shots. He is

> using lactulose for the ammonia levels. they were at 77 while in the

> hospital

> and 3 weeks ago his ammonia was 156. Last week they were at 66. He is so

> tired all the time, he sleeps so much. His liver specialist said that a med

> rate of 16 he would need a liver transplant. His med rate is 14. He has

> applied for disability. What should I expect.? Hes had an ultrasound, all

> of

> the labs, and x rays. we are waiting on the results. In any case we were

> very

> stunned by the news that he is almost at the point of a liver transplant.

> Can

> someone tell me some of the symptoms, outcomes, prognosis (which i realize

> is

> different in each case) will he be tired like this all the time. He is 54

> years

> old. It doesnt seem like anything can be done, except control the side

> effects,

> like leg swelling and infection. any input would be appreciate. Thanks

> Bonnie

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Tue, August 24, 2010 9:53:54 PM

> Subject: Re: need to vent

>

> yes roller coater ride puts it mildly girl!!!!!

>

> > > >

> > > > > this will sound crazy so if you want to skip reading i wont mind. i

> am

> > > > > pissed, bobby glenns not been feeling well calling dr. tommorrow

> want

> > > scan

> > > > > and labs done NOW not wait till nov. hes losing days by 2. he

> forgets i

> > > fed

> > > > > him and skyler the grandson living with us, i found his empty glass

> of

> > > in

> > > > > the frige instesd of the sink today. he thought it was friday our

> > > > > grandaughters birthday but its sunday, we went to her party he

> doesnt

> > > > > remeber it. like i said i am pissed or call it scared what ever it

> is i

> > > am

> > > > > it. my newest grandbaby conts. to do good then bad....to be

> expected

> > > for a

> > > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me

> out

> > > ...hes

> > > > > a boy and for some reason its different than the girls...hes in

> time

> > > out

> > > > > right now....am i to hard on him...or is he to stubborn i dont

> know.

> > > the

> > > > > tears rolling down my face says it all. i am tired but i have to

> cont.

> > > on i

> > > > > have no choice in any of this. if i had my choice i would be at the

> > > ocean

> > > > > watching the waves lap the shore...eating at cock of the walk with

> > > elsie and

> > > > > roger...but i have no choice. i am here i am mad i am confused i am

> > > > > ....??????? really makes me want a glass of wine, but i live to far

> > > from

> > > > > town and its sunday and i cant get any lol. whys life so messed

> > > up...what

> > > > > did i do to deserve all this crap???? should i walk away and tell

> them

> > > all

> > > > > do it yourself??? should i just suck it up ,drink water and drive

> on

> > > soldier

> > > > > ???? i know this is my life, for whatever reason these are the

> cards

> > > dealt

> > > > > to me, and i will find away to stand. but right now i am pissy i am

> sad

> > > i

> > > > > miss my life the way it was. i am sorry but if i told anyone in my

> > > family

> > > > > the way i feel they would blame me for enabling everyone. you all

> and

> > > > > elsie...aka mae mae are they only ones i have to vent to that dont

> > > sugarcoat

> > > > > the facts or blow smoke up my butt. i love you all and just needed

> to

> > > get

> > > > > this off my chest cause i have been one angry chick all week cause

> i

> > > dont

> > > > > know where these feelings are supposed to go. i am angry with the

> sick

> > > ones

> > > > > the stupid ones and the ones who just dont give a crap. i wanna lay

> in

> > > the

> > > > > sun with a glass of something...even water lol. in my hand soaking

> up

> > > the

> > > > > rays, without a care in the world....but life wont let me. who

> wouldnt

> > > be

> > > > > pissed. sorry if i have offended anyone...welcome to barbys world

> its

> > > me

> > > > > against all of them.... when will it be my turn? i know that sounds

> > > selfish

> > > > > but i feel selfish right now. whats god...the universe trying to

> tell

> > > me?

> > > > > well just spit it out already i will do what i need to but i am

> tired

> > > for

> > > > > crying out loud!!

> > > > >

> > > > > ------------------------------------

> > > > >

> > > > > Group Email: livercirrhosissupport

> > > > > web address:

> > > > > http://groups.yahoo.com/group/livercirrhosissupport/

> > > > >

August 27, 2010

Yes, Jan. When the nitric oxide affects the kidneys the same as it does the

spleen, then the kidneys are damaged, and the creatinine goes waay up, and you

develop hep renal syndrome. Do you think that this applies to you? Love, B

________________________________

To: livercirrhosissupport

Sent: Fri, August 27, 2010 12:43:12 PM

Subject: Re: need to vent-AASLD guidlines

Bobby, is hepato renal syndrome when thr kidneys start going too? Jan

On Fri, Aug 27, 2010 at 4:14 AM, Bob Aragon wrote:

> This is a direct quote, cut and pasted from the PDF I posted which is found

> in

> our files section. I cut and pasted it so people can see verbatim what the

> AASLD

> guidlines are, as ther is always so much DISINFORMATION out there,

> especially by

> doctors who are not hepatologists:

>

> Recommendations

> 1. Patients with cirrhosis should be referred for

> transplantation when they develop evidence of hepatic

> dysfunction (CTP > 7 and MELD > 10) or when they

> experience their first major complication (ascites,

> variceal bleeding, or hepatic encephalopathy) (II-3).

> 2. Children with chronic liver disease should be

> referred when they deviate from normal growth curves

> or develop evidence of hepatic dysfunction or portal

> hypertension (II-3).

> 3. Patients with type I hepatorenal syndrome

> should have an expedited referral for liver transplantation

> (II-3).

>

> love, Bobby

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Fri, August 27, 2010 4:05:38 AM

> Subject: Re: need to vent

>

> Is this doc at a transplant center? if not, dont believe him. If he is, you

> might want to ask why the AASLD recommendations are for 10 and over, and

> why

> your loved one cant get on at 10? There is ample evidence that the earlier

> the

> transplantation, the better the outcome. Love, Bobby

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Thu, August 26, 2010 5:54:04 PM

> Subject: Re: need to vent

>

> Mike, thanks for the info. He is not on transplant list yet. His MELD rate

> is

> 14, doc says 16 is when u get on the list. He is very tired, sleeping a

> lot. He

>

> also has Hep C. He applied for ss. But he seems like he is just kinda

> giving

> up. Laying around on the couch, then to the bed, I heard that if he has Hep

> C

> the cirrohsis will progress quicker. Is that true. Im trying to get as

> much

> info as possible, like what to expect and how long does this go on.?

> Thanks.

> Bonnie

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Wed, August 25, 2010 10:41:46 PM

> Subject: Re: need to vent

>

> Bonnie,

> He will remain tired and sleep most the time. He will if not already have

> major

> mood swings, he might jerk and twitch when sleeping. He will be confused

> alot,

> make sure he keeps up the lactuloce, this will keep him focused. He will be

> taking a crud load of meds.,

> Is he already on the transplant list? You need to stay strong stay in there

> with

>

> him. After he recieves his transplant everything will return to normal or

> you

> will see a new man. I had the transplant 4 years ago and I am doing very

> well.

> If you have any questions what so ever please ask. Thats what we are here

> for.

> Best of luck

> Mike

>

> Subject: Re: need to vent

> To: livercirrhosissupport

> Date: Wednesday, August 25, 2010, 8:00 PM

>

> Hi everyone, I am glad to find this group and unsure how to navigate it.

> Hopefully u all can give me some insight. My husband was admitted to the

> hospital for 4 days in July. He was told prior to this that he has

> cirhossis

> and Hepatitis C. His enzymes are up and down. His liver specialist said

> that

> even though he isnt drinking, they will fluctuate. His white cells and

> platelets are very low. Too low for the interferon and ribo shots. He is

> using lactulose for the ammonia levels. they were at 77 while in the

> hospital

> and 3 weeks ago his ammonia was 156. Last week they were at 66. He is so

> tired all the time, he sleeps so much. His liver specialist said that a med

> rate of 16 he would need a liver transplant. His med rate is 14. He has

> applied for disability. What should I expect.? Hes had an ultrasound, all

> of

> the labs, and x rays. we are waiting on the results. In any case we were

> very

> stunned by the news that he is almost at the point of a liver transplant.

> Can

> someone tell me some of the symptoms, outcomes, prognosis (which i realize

> is

> different in each case) will he be tired like this all the time. He is 54

> years

> old. It doesnt seem like anything can be done, except control the side

> effects,

> like leg swelling and infection. any input would be appreciate. Thanks

> Bonnie

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Tue, August 24, 2010 9:53:54 PM

> Subject: Re: need to vent

>

> yes roller coater ride puts it mildly girl!!!!!

>

> > > >

> > > > > this will sound crazy so if you want to skip reading i wont mind. i

> am

> > > > > pissed, bobby glenns not been feeling well calling dr. tommorrow

> want

> > > scan

> > > > > and labs done NOW not wait till nov. hes losing days by 2. he

> forgets i

> > > fed

> > > > > him and skyler the grandson living with us, i found his empty glass

> of

> > > in

> > > > > the frige instesd of the sink today. he thought it was friday our

> > > > > grandaughters birthday but its sunday, we went to her party he

> doesnt

> > > > > remeber it. like i said i am pissed or call it scared what ever it

> is i

> > > am

> > > > > it. my newest grandbaby conts. to do good then bad....to be

> expected

> > > for a

> > > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me

> out

> > > ...hes

> > > > > a boy and for some reason its different than the girls...hes in

> time

> > > out

> > > > > right now....am i to hard on him...or is he to stubborn i dont

> know.

> > > the

> > > > > tears rolling down my face says it all. i am tired but i have to

> cont.

> > > on i

> > > > > have no choice in any of this. if i had my choice i would be at the

> > > ocean

> > > > > watching the waves lap the shore...eating at cock of the walk with

> > > elsie and

> > > > > roger...but i have no choice. i am here i am mad i am confused i am

> > > > > ....??????? really makes me want a glass of wine, but i live to far

> > > from

> > > > > town and its sunday and i cant get any lol. whys life so messed

> > > up...what

> > > > > did i do to deserve all this crap???? should i walk away and tell

> them

> > > all

> > > > > do it yourself??? should i just suck it up ,drink water and drive

> on

> > > soldier

> > > > > ???? i know this is my life, for whatever reason these are the

> cards

> > > dealt

> > > > > to me, and i will find away to stand. but right now i am pissy i am

> sad

> > > i

> > > > > miss my life the way it was. i am sorry but if i told anyone in my

> > > family

> > > > > the way i feel they would blame me for enabling everyone. you all

> and

> > > > > elsie...aka mae mae are they only ones i have to vent to that dont

> > > sugarcoat

> > > > > the facts or blow smoke up my butt. i love you all and just needed

> to

> > > get

> > > > > this off my chest cause i have been one angry chick all week cause

> i

> > > dont

> > > > > know where these feelings are supposed to go. i am angry with the

> sick

> > > ones

> > > > > the stupid ones and the ones who just dont give a crap. i wanna lay

> in

> > > the

> > > > > sun with a glass of something...even water lol. in my hand soaking

> up

> > > the

> > > > > rays, without a care in the world....but life wont let me. who

> wouldnt

> > > be

> > > > > pissed. sorry if i have offended anyone...welcome to barbys world

> its

> > > me

> > > > > against all of them.... when will it be my turn? i know that sounds

> > > selfish

> > > > > but i feel selfish right now. whats god...the universe trying to

> tell

> > > me?

> > > > > well just spit it out already i will do what i need to but i am

> tired

> > > for

> > > > > crying out loud!!

> > > > >

> > > > > ------------------------------------

> > > > >

> > > > > Group Email: livercirrhosissupport

> > > > > web address:

> > > > > http://groups.yahoo.com/group/livercirrhosissupport/

> > > > >

August 27, 2010

This is a direct quote, cut and pasted from the PDF I posted which is found in

our files section. I cut and pasted it so people can see verbatim what the AASLD

guidlines are, as ther is always so much DISINFORMATION out there, especially by

doctors who are not hepatologists:

Recommendations

1. Patients with cirrhosis should be referred for

transplantation when they develop evidence of hepatic

dysfunction (CTP > 7 and MELD > 10) or when they

experience their first major complication (ascites,

variceal bleeding, or hepatic encephalopathy) (II-3).

2. Children with chronic liver disease should be

referred when they deviate from normal growth curves

or develop evidence of hepatic dysfunction or portal

hypertension (II-3).

3. Patients with type I hepatorenal syndrome

should have an expedited referral for liver transplantation

(II-3).

love, Bobby

________________________________

To: livercirrhosissupport

Sent: Fri, August 27, 2010 5:14:08 AM