Re: Digest Number 1839

[Guest guest]

Hannah:

I know that people do refer to a biopsy as the " gold standard, " but they are

not always done. I lost my mom to non-alcoholic cirrhosis last September,

and she never had one. She had a really low platelet count, and they were

concerned about her bleeding following the biopsy. I know they did a CAT

scan and ultrasound, and they might have done an MRI as well. She also had

esophageal varices, and swelling in her legs. They didn't think that the

biopsy was worth the risk to absolutely positively diagnose cirrhosis. They

could see the nodules on the other tests. And yes, she was followed by a

local hepatologist, and she was seeing the head of the transplant program at

a university hospital. It really wasn't a question of not having enough

specialists around, it was just a calculated risk to not have the biopsy.

Cirrhosis is such a strange disease, at least I found it to be. Several

days before my mom died, her liver values were still " normal. "

*******************************

Thank you so much for getting back to me, it means a lot to me. I checked

out your blog, amazing, I could not find where to leave a comment though =(

Thank you so much for all of the information. I did have one question though

that they have not perfprmed a liver biopsy yet on my Father and I not sure

why? Should they have done this already? They said they will be performing

this at the Lahey Clinic in Boston. Also when you say that my Father has

decompensated " liver disease, does this mean that anything could happen to

him before the liver transplant is performed? He is taking many medications

and also eating right and not drinking alcohol at all.

Thank you so much for all of your help and I am so glad that I can be a part

of this group. You will also be in my prayers.

Thank you.

Hannah

[Guest guest]

My mother was certainly in denial, I think. She was officially diagnosed in

January 2005 after they had to band some varices. She was told that she had

a fatty liver in the mid-60's, but no one said anything more about it. She

was a diabetic, and from what I've read, that can move you along into NASH

and cirrhosis, but no one really knows, I guess.

I was with her when the doctor told her what she had. She asked how long

she had to live, and he said while no one can know that, he would give her

18-36 months. She lived until September 2007.

I remember right after the doctor told her, she seemed more interested in

talking with him about the consistency of her poop; she just wouldn't let it

drop. I remember telling her " don't you realize that he's just told you

that you have a fatal disease? Can you take the focus off your poop for a

moment please? "

She wouldn't do any planning, even though I asked her to. I even suggested

a lawyer. Finally, a few days before she died, she asked for his card.

So, yes, she was kind of in denial. Though as I've been cleaning out her

things (she was a horrible, horrible pack rat), I found lists of questions

for the doctors, and the question that was always on there was " how long do

I have left? " So, on the one hand, I think that she accepted it

intellectually, but her actions seemed to indicate denial.

******************

Wow these are wonderful websites, thank you all so much for being so kind to

me. This is a really hard time for my family and I am trying my hardest to

just stay strong and keep everyone together.

Did anyone in the group ever go through a denial process? I feel that right

now my mom is going through that a little bit. She feels that it is serious

but she feels that the doctors are just tryiong to scare the heck out of

them.....From what I have read the stage that my father is at in the liver

disease process is pretty severe and when a doctor tells you the only option

is a transplant, I think that is serious. I think my mom is just very scared

and wants it all to get better soon....

Thanks again to everyone for the wonderful responses and information.

[Guest guest]

Thank you for this info. It is a very strange disease and I am learning more

and more about it everyday. I guess what I find so strange is that my Father

has this disease but he has no pain at all and I am wondering if that will

change unless he gets a transplant. I guess only time will tell for us.

Thank you again.

wrote:

Hannah:

I know that people do refer to a biopsy as the " gold standard, " but they are

not always done. I lost my mom to non-alcoholic cirrhosis last September,

and she never had one. She had a really low platelet count, and they were

concerned about her bleeding following the biopsy. I know they did a CAT

scan and ultrasound, and they might have done an MRI as well. She also had

esophageal varices, and swelling in her legs. They didn't think that the

biopsy was worth the risk to absolutely positively diagnose cirrhosis. They

could see the nodules on the other tests. And yes, she was followed by a

local hepatologist, and she was seeing the head of the transplant program at

a university hospital. It really wasn't a question of not having enough

specialists around, it was just a calculated risk to not have the biopsy.

Cirrhosis is such a strange disease, at least I found it to be. Several

days before my mom died, her liver values were still " normal. "

*******************************

Thank you so much for getting back to me, it means a lot to me. I checked

out your blog, amazing, I could not find where to leave a comment though =(

Thank you so much for all of the information. I did have one question though

that they have not perfprmed a liver biopsy yet on my Father and I not sure

why? Should they have done this already? They said they will be performing

this at the Lahey Clinic in Boston. Also when you say that my Father has

decompensated " liver disease, does this mean that anything could happen to

him before the liver transplant is performed? He is taking many medications

and also eating right and not drinking alcohol at all.

Thank you so much for all of your help and I am so glad that I can be a part

of this group. You will also be in my prayers.

Thank you.

Hannah

[Guest guest]

I am so sorry that you and your famil had to go through that. It is so

hard.....

They did the same thing to my father (banding the varices)......I just hope

this bellding does not happen again but they can't guarantee it that it

won't.....

wrote:

My mother was certainly in denial, I think. She was officially

diagnosed in

January 2005 after they had to band some varices. She was told that she had

a fatty liver in the mid-60's, but no one said anything more about it. She

was a diabetic, and from what I've read, that can move you along into NASH

and cirrhosis, but no one really knows, I guess.

I was with her when the doctor told her what she had. She asked how long

she had to live, and he said while no one can know that, he would give her

18-36 months. She lived until September 2007.

I remember right after the doctor told her, she seemed more interested in

talking with him about the consistency of her poop; she just wouldn't let it

drop. I remember telling her " don't you realize that he's just told you

that you have a fatal disease? Can you take the focus off your poop for a

moment please? "

She wouldn't do any planning, even though I asked her to. I even suggested

a lawyer. Finally, a few days before she died, she asked for his card.

So, yes, she was kind of in denial. Though as I've been cleaning out her

things (she was a horrible, horrible pack rat), I found lists of questions

for the doctors, and the question that was always on there was " how long do

I have left? " So, on the one hand, I think that she accepted it

intellectually, but her actions seemed to indicate denial.

******************

Wow these are wonderful websites, thank you all so much for being so kind to

me. This is a really hard time for my family and I am trying my hardest to

just stay strong and keep everyone together.

Did anyone in the group ever go through a denial process? I feel that right

now my mom is going through that a little bit. She feels that it is serious

but she feels that the doctors are just tryiong to scare the heck out of

them.....From what I have read the stage that my father is at in the liver

disease process is pretty severe and when a doctor tells you the only option

is a transplant, I think that is serious. I think my mom is just very scared

and wants it all to get better soon....

Thanks again to everyone for the wonderful responses and information.

[Guest guest]

Hanna, varicies are even stranger than the disease itself. Ardis had banding

twice that I know of, back in 2004, but when she was in the hospital for the

last time, in July of 2006, her hepatologist(who is now my hepatologist) told

her that they had done an edg on her(endoscope) and the varicies had gone away.

Her portal hypertenstion had stayed, she had a caput medusae which is a HUGE

tangle of varicose veins on the belly and splenomegally, but those bleeding

varicies went away, at least that they could see. She did leak blood in her

upper gi tract the entire time I took care of her, and had to have regular blood

transfusions. Lets hope for your dads varicies to do like ardis' did and

dissappear now that he is on the right track. Hey every one is different but

it's ok to take the good things that we learn from life and hope for them. I em

hoping that I dont develop more collaterals. At least they are watching mine and

the doctors at the university keep

close track of them.

Re: Digest Number 1839

I am so sorry that you and your famil had to go through that.

It is so hard.....

They did the same thing to my father (banding the varices).... ..I just hope

this bellding does not happen again but they can't guarantee it that it

won't.....

<abogada2sbcglobal (DOT) net> wrote:

My mother was certainly in denial, I think. She was officially

diagnosed in

January 2005 after they had to band some varices. She was told that she had

a fatty liver in the mid-60's, but no one said anything more about it. She

was a diabetic, and from what I've read, that can move you along into NASH

and cirrhosis, but no one really knows, I guess.

I was with her when the doctor told her what she had. She asked how long

she had to live, and he said while no one can know that, he would give her

18-36 months. She lived until September 2007.

I remember right after the doctor told her, she seemed more interested in

talking with him about the consistency of her poop; she just wouldn't let it

drop. I remember telling her " don't you realize that he's just told you

that you have a fatal disease? Can you take the focus off your poop for a

moment please? "

She wouldn't do any planning, even though I asked her to. I even suggested

a lawyer. Finally, a few days before she died, she asked for his card.

So, yes, she was kind of in denial. Though as I've been cleaning out her

things (she was a horrible, horrible pack rat), I found lists of questions

for the doctors, and the question that was always on there was " how long do

I have left? " So, on the one hand, I think that she accepted it

intellectually, but her actions seemed to indicate denial.

************ ******

Wow these are wonderful websites, thank you all so much for being so kind to

me. This is a really hard time for my family and I am trying my hardest to

just stay strong and keep everyone together.

Did anyone in the group ever go through a denial process? I feel that right

now my mom is going through that a little bit. She feels that it is serious

but she feels that the doctors are just tryiong to scare the heck out of

them.....From what I have read the stage that my father is at in the liver

disease process is pretty severe and when a doctor tells you the only option

is a transplant, I think that is serious. I think my mom is just very scared

and wants it all to get better soon....

Thanks again to everyone for the wonderful responses and information.

[Guest guest]

Thank you Bobby.

I know the varices are a strange thing bc they did say that it could happen

again but if it did they would have to put a stent in there (think that is what

it is called).....

Bob Aragon wrote:

Hanna, varicies are even stranger than the disease itself. Ardis had

banding twice that I know of, back in 2004, but when she was in the hospital for

the last time, in July of 2006, her hepatologist(who is now my hepatologist)

told her that they had done an edg on her(endoscope) and the varicies had gone

away. Her portal hypertenstion had stayed, she had a caput medusae which is a

HUGE tangle of varicose veins on the belly and splenomegally, but those bleeding

varicies went away, at least that they could see. She did leak blood in her

upper gi tract the entire time I took care of her, and had to have regular blood

transfusions. Lets hope for your dads varicies to do like ardis' did and

dissappear now that he is on the right track. Hey every one is different but

it's ok to take the good things that we learn from life and hope for them. I em

hoping that I dont develop more collaterals. At least they are watching mine and

the doctors at the university keep

close track of them.

Re: Digest Number 1839

I am so sorry that you and your famil had to go through that. It is so hard.....

They did the same thing to my father (banding the varices).... ..I just hope

this bellding does not happen again but they can't guarantee it that it

won't.....

<abogada2sbcglobal (DOT) net> wrote:

My mother was certainly in denial, I think. She was officially diagnosed in

January 2005 after they had to band some varices. She was told that she had

a fatty liver in the mid-60's, but no one said anything more about it. She

was a diabetic, and from what I've read, that can move you along into NASH

and cirrhosis, but no one really knows, I guess.

I was with her when the doctor told her what she had. She asked how long

she had to live, and he said while no one can know that, he would give her

18-36 months. She lived until September 2007.

I remember right after the doctor told her, she seemed more interested in

talking with him about the consistency of her poop; she just wouldn't let it

drop. I remember telling her " don't you realize that he's just told you

that you have a fatal disease? Can you take the focus off your poop for a

moment please? "

She wouldn't do any planning, even though I asked her to. I even suggested

a lawyer. Finally, a few days before she died, she asked for his card.

So, yes, she was kind of in denial. Though as I've been cleaning out her

things (she was a horrible, horrible pack rat), I found lists of questions

for the doctors, and the question that was always on there was " how long do

I have left? " So, on the one hand, I think that she accepted it

intellectually, but her actions seemed to indicate denial.

************ ******

Wow these are wonderful websites, thank you all so much for being so kind to

me. This is a really hard time for my family and I am trying my hardest to

just stay strong and keep everyone together.

Did anyone in the group ever go through a denial process? I feel that right

now my mom is going through that a little bit. She feels that it is serious

but she feels that the doctors are just tryiong to scare the heck out of

them.....From what I have read the stage that my father is at in the liver

disease process is pretty severe and when a doctor tells you the only option

is a transplant, I think that is serious. I think my mom is just very scared

and wants it all to get better soon....

Thanks again to everyone for the wonderful responses and information.

[Guest guest]

I have cirrhosis without pain also. I sometimes do have upper

right quandrant pressure and a little uncomfortable in that area.

But not often and no other pain per se, due to the cirrhosis. Some

do tho. Also my cirrhosis was discovered thru an exploratory surgery

for something else and the surgeon came out and told my hubby that I

had alcoholic cirrhosis.. Well I drank maybe two drinks a year and

thats it. Gastro ordered a biopsy that determined that it was NASH

and this mimics Alcoholic Cirr. The only way to know the actual

makeup of the disease is thru a biopsy, but if they are not

necessary, they do not like to perform them. They definitely have

their risks. Im sure when your dad goes for his eval they will do a

battery of tests to include a biopsy. Also have your dad ask for his

medical records on the spot and any photos and copies of cts etc.

God Bless, Debra

In livercirrhosissupport , Hannah Reid

wrote:

>

> Thank you for this info. It is a very strange disease and I am

learning more and more about it everyday. I guess what I find so

strange is that my Father has this disease but he has no pain at all

and I am wondering if that will change unless he gets a transplant.

I guess only time will tell for us.

>

> Thank you again.

>

> wrote:

> Hannah:

>

> I know that people do refer to a biopsy as the " gold standard, " but

they are

> not always done. I lost my mom to non-alcoholic cirrhosis last

September,

> and she never had one. She had a really low platelet count, and

they were

> concerned about her bleeding following the biopsy. I know they did

a CAT

> scan and ultrasound, and they might have done an MRI as well. She

also had

> esophageal varices, and swelling in her legs. They didn't think

that the

> biopsy was worth the risk to absolutely positively diagnose

cirrhosis. They

> could see the nodules on the other tests. And yes, she was followed

by a

> local hepatologist, and she was seeing the head of the transplant

program at

> a university hospital. It really wasn't a question of not having

enough

> specialists around, it was just a calculated risk to not have the

biopsy.

>

> Cirrhosis is such a strange disease, at least I found it to be.

Several

> days before my mom died, her liver values were still " normal. "

>

> *******************************

>

> Thank you so much for getting back to me, it means a lot to me. I

checked

> out your blog, amazing, I could not find where to leave a comment

though =(

>

> Thank you so much for all of the information. I did have one

question though

> that they have not perfprmed a liver biopsy yet on my Father and I

not sure

> why? Should they have done this already? They said they will be

performing

> this at the Lahey Clinic in Boston. Also when you say that my

Father has

> decompensated " liver disease, does this mean that anything could

happen to

> him before the liver transplant is performed? He is taking many

medications

> and also eating right and not drinking alcohol at all.

>

> Thank you so much for all of your help and I am so glad that I can

be a part

> of this group. You will also be in my prayers.

>

> Thank you.

> Hannah

>

>

[Guest guest]

My mom didn't have any pain until the week before she passed. Some times her

skin hurt from being bedridden, but no pain...which was a huge surprise. It was

nice to have her so present in her last months with us. She slept a LOT. And

like 's mom was diagnosed with fatty liver in the 60's.

Pamela

Re: Digest Number 1839

Thank you for this info. It is a very strange disease and I am learning more

and more about it everyday. I guess what I find so strange is that my Father has

this disease but he has no pain at all and I am wondering if that will change

unless he gets a transplant. I guess only time will tell for us.

Thank you again.

wrote:

Hannah:

I know that people do refer to a biopsy as the " gold standard, " but they are

not always done. I lost my mom to non-alcoholic cirrhosis last September,

and she never had one. She had a really low platelet count, and they were

concerned about her bleeding following the biopsy. I know they did a CAT

scan and ultrasound, and they might have done an MRI as well. She also had

esophageal varices, and swelling in her legs. They didn't think that the

biopsy was worth the risk to absolutely positively diagnose cirrhosis. They

could see the nodules on the other tests. And yes, she was followed by a

local hepatologist, and she was seeing the head of the transplant program at

a university hospital. It really wasn't a question of not having enough

specialists around, it was just a calculated risk to not have the biopsy.

Cirrhosis is such a strange disease, at least I found it to be. Several

days before my mom died, her liver values were still " normal. "

*******************************

Thank you so much for getting back to me, it means a lot to me. I checked

out your blog, amazing, I could not find where to leave a comment though =(

Thank you so much for all of the information. I did have one question though

that they have not perfprmed a liver biopsy yet on my Father and I not sure

why? Should they have done this already? They said they will be performing

this at the Lahey Clinic in Boston. Also when you say that my Father has

decompensated " liver disease, does this mean that anything could happen to

him before the liver transplant is performed? He is taking many medications

and also eating right and not drinking alcohol at all.

Thank you so much for all of your help and I am so glad that I can be a part

of this group. You will also be in my prayers.

Thank you.

Hannah

[Guest guest]

I meant to address that last post to Hannah.. Sorry Debra

> > Hannah:

> >

> > I know that people do refer to a biopsy as the " gold standard, "

but

> they are

> > not always done. I lost my mom to non-alcoholic cirrhosis last

> September,

> > and she never had one. She had a really low platelet count, and

> they were

> > concerned about her bleeding following the biopsy. I know they

did

> a CAT

> > scan and ultrasound, and they might have done an MRI as well. She

> also had

> > esophageal varices, and swelling in her legs. They didn't think

> that the

> > biopsy was worth the risk to absolutely positively diagnose

> cirrhosis. They

> > could see the nodules on the other tests. And yes, she was

followed

> by a

> > local hepatologist, and she was seeing the head of the transplant

> program at

> > a university hospital. It really wasn't a question of not having

> enough

> > specialists around, it was just a calculated risk to not have the

> biopsy.

> >

> > Cirrhosis is such a strange disease, at least I found it to be.

> Several

> > days before my mom died, her liver values were still " normal. "

> >

> > *******************************

> >

> > Thank you so much for getting back to me, it means a lot to me. I

> checked

> > out your blog, amazing, I could not find where to leave a comment

> though =(

> >

> > Thank you so much for all of the information. I did have one

> question though

> > that they have not perfprmed a liver biopsy yet on my Father and

I

> not sure

> > why? Should they have done this already? They said they will be

> performing

> > this at the Lahey Clinic in Boston. Also when you say that my

> Father has

> > decompensated " liver disease, does this mean that anything could

> happen to

> > him before the liver transplant is performed? He is taking many

> medications

> > and also eating right and not drinking alcohol at all.

> >

> > Thank you so much for all of your help and I am so glad that I

can

> be a part

> > of this group. You will also be in my prayers.

> >

> > Thank you.

> > Hannah

> >

> >

[Guest guest]

Pamela, I am so glad to see a picture of you and your Mom and Dad.

You know you have become such a blessing to this group. I remember

and it was just a short while ago when you joined and your mom and

dad had just moved in with you as she was newly diagnosed. You

learned so much in so little time and now you are able to help

others. You were a great blessing to your Mom and now to those like

you who come seeking info on their loved ones. Keep up the God work

girl. Debra

> Hannah:

>

> I know that people do refer to a biopsy as the " gold standard, "

but they are

> not always done. I lost my mom to non-alcoholic cirrhosis last

September,

> and she never had one. She had a really low platelet count, and

they were

> concerned about her bleeding following the biopsy. I know they

did a CAT

> scan and ultrasound, and they might have done an MRI as well. She

also had

> esophageal varices, and swelling in her legs. They didn't think

that the

> biopsy was worth the risk to absolutely positively diagnose

cirrhosis. They

> could see the nodules on the other tests. And yes, she was

followed by a

> local hepatologist, and she was seeing the head of the transplant

program at

> a university hospital. It really wasn't a question of not having

enough

> specialists around, it was just a calculated risk to not have the

biopsy.

>

> Cirrhosis is such a strange disease, at least I found it to be.

Several

> days before my mom died, her liver values were still " normal. "

>

> *******************************

>

> Thank you so much for getting back to me, it means a lot to me. I

checked

> out your blog, amazing, I could not find where to leave a comment

though =(

>

> Thank you so much for all of the information. I did have one

question though

> that they have not perfprmed a liver biopsy yet on my Father and

I not sure

> why? Should they have done this already? They said they will be

performing

> this at the Lahey Clinic in Boston. Also when you say that my

Father has

> decompensated " liver disease, does this mean that anything could

happen to

> him before the liver transplant is performed? He is taking many

medications

> and also eating right and not drinking alcohol at all.

>

> Thank you so much for all of your help and I am so glad that I

can be a part

> of this group. You will also be in my prayers.

>

> Thank you.

> Hannah

>

>

[Guest guest]

Pamela, Im sorry to hear that you are struggling with your Dad going

back home and Im sure it is hurting to lose that connection, but I

bet when you go for the Memorial in May that you will feel comforted

to see him back in his own home and able to get on with life. Im

praying for you Sweetie.

> > Hannah:

> >

> > I know that people do refer to a biopsy as the " gold standard, "

> but they are

> > not always done. I lost my mom to non-alcoholic cirrhosis last

> September,

> > and she never had one. She had a really low platelet count, and

> they were

> > concerned about her bleeding following the biopsy. I know they

> did a CAT

> > scan and ultrasound, and they might have done an MRI as well.

She

> also had

> > esophageal varices, and swelling in her legs. They didn't think

> that the

> > biopsy was worth the risk to absolutely positively diagnose

> cirrhosis. They

> > could see the nodules on the other tests. And yes, she was

> followed by a

> > local hepatologist, and she was seeing the head of the

transplant

> program at

> > a university hospital. It really wasn't a question of not

having

> enough

> > specialists around, it was just a calculated risk to not have

the

> biopsy.

> >

> > Cirrhosis is such a strange disease, at least I found it to be.

> Several

> > days before my mom died, her liver values were still " normal. "

> >

> > *******************************

> >

> > Thank you so much for getting back to me, it means a lot to me.

I

> checked

> > out your blog, amazing, I could not find where to leave a

comment

> though =(

> >

> > Thank you so much for all of the information. I did have one

> question though

> > that they have not perfprmed a liver biopsy yet on my Father

and

> I not sure

> > why? Should they have done this already? They said they will be

> performing

> > this at the Lahey Clinic in Boston. Also when you say that my

> Father has

> > decompensated " liver disease, does this mean that anything

could

> happen to

> > him before the liver transplant is performed? He is taking many

> medications

> > and also eating right and not drinking alcohol at all.

> >

> > Thank you so much for all of your help and I am so glad that I

> can be a part

> > of this group. You will also be in my prayers.

> >

> > Thank you.

> > Hannah

> >

> >

[Guest guest]

That is the same as my husband Brad, the liver specialist wont do a biopsy on

him because he

has become anaemic and they are worried he will bleed. So his diagnosis has just

gone of

blood test results and all his symptons.

Tracey

To: livercirrhosissupport@...: abogada2@...: Mon,

7 Apr 2008 20:25:24 -0400Subject: Re: Digest Number

1839

Hannah: I know that people do refer to a biopsy as the " gold standard, " but they

arenot always done. I lost my mom to non-alcoholic cirrhosis last September,and

she never had one. She had a really low platelet count, and they wereconcerned

about her bleeding following the biopsy. I know they did a CATscan and

ultrasound, and they might have done an MRI as well. She also hadesophageal

varices, and swelling in her legs. They didn't think that thebiopsy was worth

the risk to absolutely positively diagnose cirrhosis. Theycould see the nodules

on the other tests. And yes, she was followed by alocal hepatologist, and she

was seeing the head of the transplant program ata university hospital. It really

wasn't a question of not having enoughspecialists around, it was just a

calculated risk to not have the biopsy. Cirrhosis is such a strange disease, at

least I found it to be. Severaldays before my mom died, her liver values were

still " normal. " ******************************* Thank you so much for getting

back to me, it means a lot to me. I checkedout your blog, amazing, I could not

find where to leave a comment though =( Thank you so much for all of the

information. I did have one question thoughthat they have not perfprmed a liver

biopsy yet on my Father and I not surewhy? Should they have done this already?

They said they will be performingthis at the Lahey Clinic in Boston. Also when

you say that my Father has decompensated " liver disease, does this mean that

anything could happen tohim before the liver transplant is performed? He is

taking many medicationsand also eating right and not drinking alcohol at all.

Thank you so much for all of your help and I am so glad that I can be a partof

this group. You will also be in my prayers. Thank you. Hannah[Non-text portions

of this message have been removed]

_________________________________________________________________

You dream job is up for grabs. Grab it.

http://mycareer.com.au/?s_cid=596065

[Guest guest]

How is your husband doing, , and how are you holding up? We say prayers for

him at bed time. Bobby

Sent via BlackBerry from T-Mobile

Re: Digest Number 1839

Hannah: I know that people do refer to a biopsy as the " gold standard, " but

they arenot always done. I lost my mom to non-alcoholic cirrhosis last

September,and she never had one. She had a really low platelet count, and they

wereconcerned about her bleeding following the biopsy. I know they did a CATscan

and ultrasound, and they might have done an MRI as well. She also hadesophageal

varices, and swelling in her legs. They didn't think that thebiopsy was worth

the risk to absolutely positively diagnose cirrhosis. Theycould see the nodules

on the other tests. And yes, she was followed by alocal hepatologist, and she

was seeing the head of the transplant program ata university hospital. It really

wasn't a question of not having enoughspecialists around, it was just a

calculated risk to not have the biopsy. Cirrhosis is such a strange disease, at

least I found it to be. Severaldays before my mom died, her liver values were

still " normal. " ******************************* Thank you so much for getting

back to me, it means a lot to me. I checkedout your blog, amazing, I could not

find where to leave a comment though =( Thank you so much for all of the

information. I did have one question thoughthat they have not perfprmed a liver

biopsy yet on my Father and I not surewhy? Should they have done this already?

They said they will be performingthis at the Lahey Clinic in Boston. Also when

you say that my Father has decompensated " liver disease, does this mean that

anything could happen tohim before the liver transplant is performed? He is

taking many medicationsand also eating right and not drinking alcohol at all.

Thank you so much for all of your help and I am so glad that I can be a partof

this group. You will also be in my prayers. Thank you. Hannah[Non-text portions

of this message have been removed]

__________________________________________________________

You dream job is up for grabs. Grab it.

http://mycareer. <http://mycareer.com.au/?s_cid=596065> com.au/?s_cid=596065

[Guest guest]

So can they ever tell how serious it is without a biopsy?

Tracey O'Brien wrote:

That is the same as my husband Brad, the liver specialist wont do a biopsy on

him because he

has become anaemic and they are worried he will bleed. So his diagnosis has just

gone of

blood test results and all his symptons.

Tracey

To: livercirrhosissupport@...: abogada2@...: Mon,

7 Apr 2008 20:25:24 -0400Subject: Re: Digest Number

1839

Hannah: I know that people do refer to a biopsy as the " gold standard, " but they

arenot always done. I lost my mom to non-alcoholic cirrhosis last September,and

she never had one. She had a really low platelet count, and they wereconcerned

about her bleeding following the biopsy. I know they did a CATscan and

ultrasound, and they might have done an MRI as well. She also hadesophageal

varices, and swelling in her legs. They didn't think that thebiopsy was worth

the risk to absolutely positively diagnose cirrhosis. Theycould see the nodules

on the other tests. And yes, she was followed by alocal hepatologist, and she

was seeing the head of the transplant program ata university hospital. It really

wasn't a question of not having enoughspecialists around, it was just a

calculated risk to not have the biopsy. Cirrhosis is such a strange disease, at

least I found it to be. Severaldays before my mom died, her liver values were

still " normal. " ******************************* Thank

you so much for getting back to me, it means a lot to me. I checkedout your

blog, amazing, I could not find where to leave a comment though =( Thank you so

much for all of the information. I did have one question thoughthat they have

not perfprmed a liver biopsy yet on my Father and I not surewhy? Should they

have done this already? They said they will be performingthis at the Lahey

Clinic in Boston. Also when you say that my Father has decompensated " liver

disease, does this mean that anything could happen tohim before the liver

transplant is performed? He is taking many medicationsand also eating right and

not drinking alcohol at all. Thank you so much for all of your help and I am so

glad that I can be a partof this group. You will also be in my prayers. Thank

you. Hannah

[Guest guest]

It is a huge surprise that there sometimes is no pain that goes with it.

Ohana5 wrote: My mom didn't have any pain until

the week before she passed. Some times her skin hurt from being bedridden, but

no pain...which was a huge surprise. It was nice to have her so present in her

last months with us. She slept a LOT. And like 's mom was diagnosed with

fatty liver in the 60's.

Pamela

Re: Digest Number 1839

Thank you for this info. It is a very strange disease and I am learning more and

more about it everyday. I guess what I find so strange is that my Father has

this disease but he has no pain at all and I am wondering if that will change

unless he gets a transplant. I guess only time will tell for us.

Thank you again.

wrote:

Hannah:

I know that people do refer to a biopsy as the " gold standard, " but they are

not always done. I lost my mom to non-alcoholic cirrhosis last September,

and she never had one. She had a really low platelet count, and they were

concerned about her bleeding following the biopsy. I know they did a CAT

scan and ultrasound, and they might have done an MRI as well. She also had

esophageal varices, and swelling in her legs. They didn't think that the

biopsy was worth the risk to absolutely positively diagnose cirrhosis. They

could see the nodules on the other tests. And yes, she was followed by a

local hepatologist, and she was seeing the head of the transplant program at

a university hospital. It really wasn't a question of not having enough

specialists around, it was just a calculated risk to not have the biopsy.

Cirrhosis is such a strange disease, at least I found it to be. Several

days before my mom died, her liver values were still " normal. "

*******************************

Thank you so much for getting back to me, it means a lot to me. I checked

out your blog, amazing, I could not find where to leave a comment though =(

Thank you so much for all of the information. I did have one question though

that they have not perfprmed a liver biopsy yet on my Father and I not sure

why? Should they have done this already? They said they will be performing

this at the Lahey Clinic in Boston. Also when you say that my Father has

decompensated " liver disease, does this mean that anything could happen to

him before the liver transplant is performed? He is taking many medications

and also eating right and not drinking alcohol at all.

Thank you so much for all of your help and I am so glad that I can be a part

of this group. You will also be in my prayers.

Thank you.

Hannah

[Guest guest]

Thank you Debra for this information, I really appreciate it. I am sorry that

you are having to go through this, it is so hard. I am just trying to get as

much information about it as I can bc I just want to be able to help my Dad in

anyway that I can. It is such a shock to me and I just feel like I have no

control over it at all.

Does anyone know if there are support groups that you can meet with on a

weekly basis that could help? I am a pretty strong person normally but I am

having such a hard time not breaking down everyday bc of my father's condition.

Thank you.

Debra wrote:

I have cirrhosis without pain also. I sometimes do have upper

right quandrant pressure and a little uncomfortable in that area.

But not often and no other pain per se, due to the cirrhosis. Some

do tho. Also my cirrhosis was discovered thru an exploratory surgery

for something else and the surgeon came out and told my hubby that I

had alcoholic cirrhosis.. Well I drank maybe two drinks a year and

thats it. Gastro ordered a biopsy that determined that it was NASH

and this mimics Alcoholic Cirr. The only way to know the actual

makeup of the disease is thru a biopsy, but if they are not

necessary, they do not like to perform them. They definitely have

their risks. Im sure when your dad goes for his eval they will do a

battery of tests to include a biopsy. Also have your dad ask for his

medical records on the spot and any photos and copies of cts etc.

God Bless, Debra

In livercirrhosissupport , Hannah Reid

wrote:

>

> Thank you for this info. It is a very strange disease and I am

learning more and more about it everyday. I guess what I find so

strange is that my Father has this disease but he has no pain at all

and I am wondering if that will change unless he gets a transplant.

I guess only time will tell for us.

>

> Thank you again.

>

> wrote:

> Hannah:

>

> I know that people do refer to a biopsy as the " gold standard, " but

they are

> not always done. I lost my mom to non-alcoholic cirrhosis last

September,

> and she never had one. She had a really low platelet count, and

they were

> concerned about her bleeding following the biopsy. I know they did

a CAT

> scan and ultrasound, and they might have done an MRI as well. She

also had

> esophageal varices, and swelling in her legs. They didn't think

that the

> biopsy was worth the risk to absolutely positively diagnose

cirrhosis. They

> could see the nodules on the other tests. And yes, she was followed

by a

> local hepatologist, and she was seeing the head of the transplant

program at

> a university hospital. It really wasn't a question of not having

enough

> specialists around, it was just a calculated risk to not have the

biopsy.

>

> Cirrhosis is such a strange disease, at least I found it to be.

Several

> days before my mom died, her liver values were still " normal. "

>

> *******************************

>

> Thank you so much for getting back to me, it means a lot to me. I

checked

> out your blog, amazing, I could not find where to leave a comment

though =(

>

> Thank you so much for all of the information. I did have one

question though

> that they have not perfprmed a liver biopsy yet on my Father and I

not sure

> why? Should they have done this already? They said they will be

performing

> this at the Lahey Clinic in Boston. Also when you say that my

Father has

> decompensated " liver disease, does this mean that anything could

happen to

> him before the liver transplant is performed? He is taking many

medications

> and also eating right and not drinking alcohol at all.

>

> Thank you so much for all of your help and I am so glad that I can

be a part

> of this group. You will also be in my prayers.

>

> Thank you.

> Hannah

>

>

[Guest guest]

Hanna, what I am going to tell you please realize that I am not a doctor, nor am

I trying to act like one. I am a lay person who LOVES to read, and I am a master

gardner in my profession (disabled now) so can decifer a goodly amount of latin,

which is all through medicine. Okay, the severity of liver disease is literally

dependant on how the patient is doing. The liver is so redundant that it can

sustain an enormouse amount of damage and still function. It takes very little

liver function to give off " normal " lab values. If your dad is having terrible

untreatable encephalopathy where he needs to be hospitalized or if he is

bleeding internally(common with this) or so tired and fetigued he can't walk(

also common) then it is more severe than if he can take care of his own needs,

still get around etc. " Liver function " panels are a misnomer because clotting

factors are usually a better predictor of severity. There is a thing called MELD

score. Google " meld unos " and it will take you to the mayo clinic web site for

MELD score. The score goes from 6 to 40. People who have a 40 are thought to

have less than two weeks to live and people who have a 6 might live 10 or more

years. You need your dads blood tests results to get this score. Bilirubin

Total, INR, and Creatinine. Don't forget to enable Java scripts in your web

browser for it to work. Please let us know what it is if he doesn't mind.

Bobby

Sent via BlackBerry from T-Mobile

Re: Digest Number 1839

Hannah: I know that people do refer to a biopsy as the " gold standard, " but

they arenot always done. I lost my mom to non-alcoholic cirrhosis last

September,and she never had one. She had a really low platelet count, and they

wereconcerned about her bleeding following the biopsy. I know they did a CATscan

and ultrasound, and they might have done an MRI as well. She also hadesophageal

varices, and swelling in her legs. They didn't think that thebiopsy was worth

the risk to absolutely positively diagnose cirrhosis. Theycould see the nodules

on the other tests. And yes, she was followed by alocal hepatologist, and she

was seeing the head of the transplant program ata university hospital. It really

wasn't a question of not having enoughspecialists around, it was just a

calculated risk to not have the biopsy. Cirrhosis is such a strange disease, at

least I found it to be. Severaldays before my mom died, her liver values were

still " normal. " ******************************* Thank

you so much for getting back to me, it means a lot to me. I checkedout your

blog, amazing, I could not find where to leave a comment though =( Thank you so

much for all of the information. I did have one question thoughthat they have

not perfprmed a liver biopsy yet on my Father and I not surewhy? Should they

have done this already? They said they will be performingthis at the Lahey

Clinic in Boston. Also when you say that my Father has decompensated " liver

disease, does this mean that anything could happen tohim before the liver

transplant is performed? He is taking many medicationsand also eating right and

not drinking alcohol at all. Thank you so much for all of your help and I am so

glad that I can be a partof this group. You will also be in my prayers. Thank

you. Hannah

[Guest guest]

He has had 3 iron infusions in the past 6 weeks cause his iron count was so

low. He is still having ascitic taps every 2 weeks, they drain between 9 and

14 litres everytime. For the past few months he has been vomiting bile at

different

times of the day, especially as it gets closer to tap day. We saw the kidney

specialist last Monday and he said Brad's kidney functiion has improved

slightly.

We go to see the liver specialist this Friday. And it looks as if the hep c

treatment has worked, so I guess thats a bonus.

http://a.ninemsn.com.au/b.aspx?URL=http%3A%2F%2Fninemsn%2Eseek%2Ecom%2Eau%2Fcare\

er%2Dresources%2Fsalary%2Dcentre%2F%3Ftracking%3Dsk%3Ahet%3Asc%3Anine%3A0%3Ahot%\

3Atext & _t=764565661 & _r=OCT07_endtext_salary & _m=EXT

[Guest guest]

My wife also had very little discomfort. I can only remember three times she was

ever in any pain. At the first onset of the disease, she had abdominal cramping

and nasuea then a year and a half later she developed pancreatitis and a year

after that during her last week of life she experience severe pain from the

kidneys failing. I can only describe that as the whole body cramping all at

once. The pain was so great she passed out from it. The nurses didn't even have

time to give her morphine.

MaC

Hannah Reid wrote: It is a

huge surprise that there sometimes is no pain that goes with it.

---------------------------------

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

Access, No Cost.

[Guest guest]

Gosh I am so sorry that she went through that....

MaC wrote: My wife also had very little discomfort.

I can only remember three times she was ever in any pain. At the first onset of

the disease, she had abdominal cramping and nasuea then a year and a half later

she developed pancreatitis and a year after that during her last week of life

she experience severe pain from the kidneys failing. I can only describe that as

the whole body cramping all at once. The pain was so great she passed out from

it. The nurses didn't even have time to give her morphine.

MaC

Hannah Reid wrote: It is a huge surprise that there

sometimes is no pain that goes with it.

---------------------------------

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

Access, No Cost.

[Guest guest]

Thank you for the information Bobby.

I actually just spoke with my Dad tonight and he said he does not know what

his MELD number is but he is going to find out. I will for sure let you know

what it is when I do find it out. So, basically if you do have a higher number

you have a better chance of having a transplant? We are actually still waiting

for an appointment at the Lahey Clinic to even have him evaluated for the

transplant.

I guess what I do not undrestand is his doctor that he has right now told him

that without a transplant he can't live a long life ....so he is in the process

of trying to get my Dad into the Lahey Clinic to speak with the Liver

Specialists up there to hopefully get him on the transplant list....BUT my

problem with this is that why is taking so long to get him an appointment set

up, it has been 5 weeks now.....I just want to say to him " this is my dad's

life " ....I just don;t feel that we should be waiting for the appointment for

such a long time...I know we will have to wait for the transplant for awhile but

all I ask is that we have the appointment with the Specialists.....

Sorry to vent I just angry sometimes with these doctors...

Thanks again.

Hannah

robwalkingeagle@... wrote:

Hanna, what I am going to tell you please realize that I am not a doctor, nor

am I trying to act like one. I am a lay person who LOVES to read, and I am a

master gardner in my profession (disabled now) so can decifer a goodly amount of

latin, which is all through medicine. Okay, the severity of liver disease is

literally dependant on how the patient is doing. The liver is so redundant that

it can sustain an enormouse amount of damage and still function. It takes very

little liver function to give off " normal " lab values. If your dad is having

terrible untreatable encephalopathy where he needs to be hospitalized or if he

is bleeding internally(common with this) or so tired and fetigued he can't walk(

also common) then it is more severe than if he can take care of his own needs,

still get around etc. " Liver function " panels are a misnomer because clotting

factors are usually a better predictor of severity. There is a thing called MELD

score. Google " meld unos " and it will

take you to the mayo clinic web site for MELD score. The score goes from 6 to

40. People who have a 40 are thought to have less than two weeks to live and

people who have a 6 might live 10 or more years. You need your dads blood tests

results to get this score. Bilirubin Total, INR, and Creatinine. Don't forget to

enable Java scripts in your web browser for it to work. Please let us know what

it is if he doesn't mind. Bobby

Sent via BlackBerry from T-Mobile

Re: Digest

Number 1839

Hannah: I know that people do refer to a biopsy as the " gold standard, " but they

arenot always done. I lost my mom to non-alcoholic cirrhosis last September,and

she never had one. She had a really low platelet count, and they wereconcerned

about her bleeding following the biopsy. I know they did a CATscan and

ultrasound, and they might have done an MRI as well. She also hadesophageal

varices, and swelling in her legs. They didn't think that thebiopsy was worth

the risk to absolutely positively diagnose cirrhosis. Theycould see the nodules

on the other tests. And yes, she was followed by alocal hepatologist, and she

was seeing the head of the transplant program ata university hospital. It really

wasn't a question of not having enoughspecialists around, it was just a

calculated risk to not have the biopsy. Cirrhosis is such a strange disease, at

least I found it to be. Severaldays before my mom died, her liver values were

still " normal. " ******************************* Thank

you so much for getting back to me, it means a lot to me. I checkedout your

blog, amazing, I could not find where to leave a comment though =( Thank you so

much for all of the information. I did have one question thoughthat they have

not perfprmed a liver biopsy yet on my Father and I not surewhy? Should they

have done this already? They said they will be performingthis at the Lahey

Clinic in Boston. Also when you say that my Father has decompensated " liver

disease, does this mean that anything could happen tohim before the liver

transplant is performed? He is taking many medicationsand also eating right and

not drinking alcohol at all. Thank you so much for all of your help and I am so

glad that I can be a partof this group. You will also be in my prayers. Thank

you. Hannah

[Guest guest]

Hey Hannah,

It seems " angry at doctors " is a common thread through this group. Some here

have great doctors and others have had their fair share of, well, let's say not

so great doctors. So it is always important to ask questions when you see them

and challenge them to do the right thing and not become complacent with your

care.

The reason it may be taking so long to see the specialist is because he is

booked with other appointments. Even though your Dads current doctor says he'll

live a longer life with a transplant doesn't mean he's in danger now. The doctor

may be looking down the road. I think his doctor is doing the right thing by

getting him into a hepatologist for an eval. I've heard too many stories of

doctors who play the wait and see game until it's too late. Like my wifes doctor

did.

MaC

Hannah Reid wrote: Thank you

for the information Bobby.

I actually just spoke with my Dad tonight and he said he does not know what

his MELD number is but he is going to find out. I will for sure let you know

what it is when I do find it out. So, basically if you do have a higher number

you have a better chance of having a transplant? We are actually still waiting

for an appointment at the Lahey Clinic to even have him evaluated for the

transplant.

I guess what I do not undrestand is his doctor that he has right now told him

that without a transplant he can't live a long life ....so he is in the process

of trying to get my Dad into the Lahey Clinic to speak with the Liver

Specialists up there to hopefully get him on the transplant list....BUT my

problem with this is that why is taking so long to get him an appointment set

up, it has been 5 weeks now.....I just want to say to him " this is my dad's

life " ....I just don;t feel that we should be waiting for the appointment for

such a long time...I know we will have to wait for the transplant for awhile but

all I ask is that we have the appointment with the Specialists.....

Sorry to vent I just angry sometimes with these doctors...

Thanks again.

Hannah

robwalkingeagle@... wrote:

Hanna, what I am going to tell you please realize that I am not a doctor, nor

am I trying to act like one. I am a lay person who LOVES to read, and I am a

master gardner in my profession (disabled now) so can decifer a goodly amount of

latin, which is all through medicine. Okay, the severity of liver disease is

literally dependant on how the patient is doing. The liver is so redundant that

it can sustain an enormouse amount of damage and still function. It takes very

little liver function to give off " normal " lab values. If your dad is having

terrible untreatable encephalopathy where he needs to be hospitalized or if he

is bleeding internally(common with this) or so tired and fetigued he can't walk(

also common) then it is more severe than if he can take care of his own needs,

still get around etc. " Liver function " panels are a misnomer because clotting

factors are usually a better predictor of severity. There is a thing called MELD

score. Google " meld unos " and it will

take you to the mayo clinic web site for MELD score. The score goes from 6 to

40. People who have a 40 are thought to have less than two weeks to live and

people who have a 6 might live 10 or more years. You need your dads blood tests

results to get this score. Bilirubin Total, INR, and Creatinine. Don't forget to

enable Java scripts in your web browser for it to work. Please let us know what

it is if he doesn't mind. Bobby

Sent via BlackBerry from T-Mobile

Re: Digest

Number 1839

Hannah: I know that people do refer to a biopsy as the " gold standard, " but

they arenot always done. I lost my mom to non-alcoholic cirrhosis last

September,and she never had one. She had a really low platelet count, and they

wereconcerned about her bleeding following the biopsy. I know they did a CATscan

and ultrasound, and they might have done an MRI as well. She also hadesophageal

varices, and swelling in her legs. They didn't think that thebiopsy was worth

the risk to absolutely positively diagnose cirrhosis. Theycould see the nodules

on the other tests. And yes, she was followed by alocal hepatologist, and she

was seeing the head of the transplant program ata university hospital. It really

wasn't a question of not having enoughspecialists around, it was just a

calculated risk to not have the biopsy. Cirrhosis is such a strange disease, at

least I found it to be. Severaldays before my mom died, her liver values were

still " normal. " ******************************* Thank

you so much for getting back to me, it means a lot to me. I checkedout your

blog, amazing, I could not find where to leave a comment though =( Thank you so

much for all of the information. I did have one question thoughthat they have

not perfprmed a liver biopsy yet on my Father and I not surewhy? Should they

have done this already? They said they will be performingthis at the Lahey

Clinic in Boston. Also when you say that my Father has decompensated " liver

disease, does this mean that anything could happen tohim before the liver

transplant is performed? He is taking many medicationsand also eating right and

not drinking alcohol at all. Thank you so much for all of your help and I am so

glad that I can be a partof this group. You will also be in my prayers. Thank

you. Hannah

[Guest guest]

Hanna, if the doctor who saw your dad says it is that serious, than I

understand why you are having breakdowns every day of crying. I would too.

Heres what someone needs to do. When I went to my doctor in June 06 while Ardis

was still alive, I saw how she was suffering of this terrible disease, and

decided that I didn't want to die like her. I punted , went to my doctor , and

confessed that I had hidden being a HEAVY drinker from her for 15 years. She did

every test on me in the book. She declared me free from liver disease. She even

got stern with me and told me that " NO, you need to let go of this idea " . The

problem was that I was noticing certain changes in my body. One was profound

breast enlargement. another was that my BUN (blood urea nitrogen level) was 3.

Normal low is usually around 6.

http://www.nlm.nih.gov/medlineplus/ency/article/003474.htm

read down in that article to low values. (liver failure)

She convinced me that I only had a bad gallbladder. I agreed to have it out.

When I woke up, my surgeon was there. The first thing out of my mouth was " did

you see my liver? " " what did it look like " ?. He patted me on my back and said, "

I'm sorry, you have cirrhosis. Macronodular type. " But look on the bright side,

at least you dont have portal hypertension. " Hanna, I had to diagnose my own

liver disease. And I had to diagnose my own portal hypertension. I have gotten

waaaaay off topic. What I did after that night was call the hepatology clinic

every day to check for a cancellation. Otherwise I would have had to wait

several months. Someone needs to get on the phone. This needs attention. In this

game, one needs to play hardball, lean forward. The " medicals " will DROP you

through the cracks if you #1. dont be your own advcate. In your dads case, he

may need someone's help. #2 squeek, and if you need to squeek LOUDLY. and #3

learn all you can about how the

liver works, you are going to be shocked at how many signs and symptoms you

have already missed. I had terrible nose bleeds, and bleeding hemroids, and had

no idea what soever that I could have bled to death. One nosebleed took over an

hour to stop. I was at work, and we were having thanksgiving for our crew, and I

just started bleeding, and I was trying to mop up the floor, and I had blood

every where. It l;ooked like a murder had occured in there. My shirt was solid

red from my chin to my belt. Get on the phone for your dad. You dont have to

wait for anyone. He may need a referral,m but that doesnt take anytime at all.

You take the first available, and then you call for cancellations. And if his

condition gets worse, take him to the ER at a transplant hospital. Usually it is

a university hospital.

http://www.massgeneral.org/transplant/liver.asp?id=patients

http://en.wikipedia.org/wiki/Beth_Israel_Deaconess_Medical_Center

http://www.transplantliving.org/Community/members/membersDirectory.aspx?memberTy\

pe=Transplant%20Centers%20by%20Organ & organ=DLI & state=ALL & region= & orderBy=i.ctr_c\

d

Re: Digest

Number 1839

Hannah: I know that people do refer to a biopsy as the " gold standard, " but they

arenot always done. I lost my mom to non-alcoholic cirrhosis last September,and

she never had one. She had a really low platelet count, and they wereconcerned

about her bleeding following the biopsy. I know they did a CATscan and

ultrasound, and they might have done an MRI as well. She also hadesophageal

varices, and swelling in her legs. They didn't think that thebiopsy was worth

the risk to absolutely positively diagnose cirrhosis. Theycould see the nodules

on the other tests. And yes, she was followed by alocal hepatologist, and she

was seeing the head of the transplant program ata university hospital. It really

wasn't a question of not having enoughspecialists around, it was just a

calculated risk to not have the biopsy. Cirrhosis is such a strange disease, at

least I found it to be. Severaldays before my mom died, her liver values were

still " normal. " ************

********* ********* * Thank

you so much for getting back to me, it means a lot to me. I checkedout your

blog, amazing, I could not find where to leave a comment though =( Thank you so

much for all of the information. I did have one question thoughthat they have

not perfprmed a liver biopsy yet on my Father and I not surewhy? Should they

have done this already? They said they will be performingthis at the Lahey

Clinic in Boston. Also when you say that my Father has decompensated " liver

disease, does this mean that anything could happen tohim before the liver

transplant is performed? He is taking many medicationsand also eating right and

not drinking alcohol at all. Thank you so much for all of your help and I am so

glad that I can be a partof this group. You will also be in my prayers. Thank

you. Hannah

[Guest guest]

Sorry If I missed something in my last post. I didn't know that it was something

urgent.

Hannah,

Bobby is right as well. It's important to be an advocate and remember the

squeaky wheel gets the oil.

I must of missed a post or two. I didn't catch the part about him being

decompensated.

Thanks Bobby for the fill in.

MaC

Bob Aragon wrote: Hanna,

if the doctor who saw your dad says it is that serious, than I understand why

you are having breakdowns every day of crying. I would too. Heres what someone

needs to do. When I went to my doctor in June 06 while Ardis was still alive, I

saw how she was suffering of this terrible disease, and decided that I didn't

want to die like her. I punted , went to my doctor , and confessed that I had

hidden being a HEAVY drinker from her for 15 years. She did every test on me in

the book. She declared me free from liver disease. She even got stern with me

and told me that " NO, you need to let go of this idea " . The problem was that I

was noticing certain changes in my body. One was profound breast enlargement.

another was that my BUN (blood urea nitrogen level) was 3. Normal low is usually

around 6.

http://www.nlm.nih.gov/medlineplus/ency/article/003474.htm

read down in that article to low values. (liver failure)

She convinced me that I only had a bad gallbladder. I agreed to have it out.

When I woke up, my surgeon was there. The first thing out of my mouth was " did

you see my liver? " " what did it look like " ?. He patted me on my back and said, "

I'm sorry, you have cirrhosis. Macronodular type. " But look on the bright side,

at least you dont have portal hypertension. " Hanna, I had to diagnose my own

liver disease. And I had to diagnose my own portal hypertension. I have gotten

waaaaay off topic. What I did after that night was call the hepatology clinic

every day to check for a cancellation. Otherwise I would have had to wait

several months. Someone needs to get on the phone. This needs attention. In this

game, one needs to play hardball, lean forward. The " medicals " will DROP you

through the cracks if you #1. dont be your own advcate. In your dads case, he

may need someone's help. #2 squeek, and if you need to squeek LOUDLY. and #3

learn all you can about how the

liver works, you are going to be shocked at how many signs and symptoms you

have already missed. I had terrible nose bleeds, and bleeding hemroids, and had

no idea what soever that I could have bled to death. One nosebleed took over an

hour to stop. I was at work, and we were having thanksgiving for our crew, and I

just started bleeding, and I was trying to mop up the floor, and I had blood

every where. It l;ooked like a murder had occured in there. My shirt was solid

red from my chin to my belt. Get on the phone for your dad. You dont have to

wait for anyone. He may need a referral,m but that doesnt take anytime at all.

You take the first available, and then you call for cancellations. And if his

condition gets worse, take him to the ER at a transplant hospital. Usually it is

a university hospital.

http://www.massgeneral.org/transplant/liver.asp?id=patients

http://en.wikipedia.org/wiki/Beth_Israel_Deaconess_Medical_Center

http://www.transplantliving.org/Community/members/membersDirectory.aspx?memberTy\

pe=Transplant%20Centers%20by%20Organ & organ=DLI & state=ALL & region= & orderBy=i.ctr_c\

d

Re: Digest Number 1839

Thank you for the information Bobby.

I actually just spoke with my Dad tonight and he said he does not know what

his MELD number is but he is going to find out. I will for sure let you know

what it is when I do find it out. So, basically if you do have a higher number

you have a better chance of having a transplant? We are actually still waiting

for an appointment at the Lahey Clinic to even have him evaluated for the

transplant.

I guess what I do not undrestand is his doctor that he has right now told him

that without a transplant he can't live a long life ....so he is in the process

of trying to get my Dad into the Lahey Clinic to speak with the Liver

Specialists up there to hopefully get him on the transplant list....BUT my

problem with this is that why is taking so long to get him an appointment set

up, it has been 5 weeks now.....I just want to say to him " this is my dad's

life " ....I just don;t feel that we should be waiting for the appointment for

such a long time...I know we will have to wait for the transplant for awhile but

all I ask is that we have the appointment with the Specialists. ....

Sorry to vent I just angry sometimes with these doctors...

Thanks again.

Hannah

__________________________________________________

[Guest guest]

I don't mean top sound panicky, but 5 weeks to SET UP an appointment? This aint

even Canada. ( No offense intended to any Canadians in the group.) On the other

hand, Hannah, MaC is the wise one here. He will not ever steer you wrong. I am

far too emotionally involved. Even though I speak highly of my hepatologist, he

still can at times annoy me, because as we reviewed my labs, I asked him about

low BUN and he denies any connection to liver disease. Yet all over the web if

you google " low BUN " you will get repeatedly------over hydration, pregnant, and

liver FAILURE. AUGGGGGGGGGGG! Mine is still a 3 and has been for a year and a

half.

Sent via BlackBerry from T-Mobile

Re: Digest Number 1839

Sorry If I missed something in my last post. I didn't know that it was something

urgent.

Hannah,

Bobby is right as well. It's important to be an advocate and remember the

squeaky wheel gets the oil.

I must of missed a post or two. I didn't catch the part about him being

decompensated.

Thanks Bobby for the fill in.

MaC

Bob Aragon <robwalkingeagle@ <mailto:robwalkingeagle%40yahoo.com> yahoo.com>

wrote: Hanna, if the doctor who saw your dad says it is that serious, than I

understand why you are having breakdowns every day of crying. I would too. Heres

what someone needs to do. When I went to my doctor in June 06 while Ardis was

still alive, I saw how she was suffering of this terrible disease, and decided

that I didn't want to die like her. I punted , went to my doctor , and confessed

that I had hidden being a HEAVY drinker from her for 15 years. She did every

test on me in the book. She declared me free from liver disease. She even got

stern with me and told me that " NO, you need to let go of this idea " . The

problem was that I was noticing certain changes in my body. One was profound

breast enlargement. another was that my BUN (blood urea nitrogen level) was 3.

Normal low is usually around 6.

http://www.nlm. <http://www.nlm.nih.gov/medlineplus/ency/article/003474.htm>

nih.gov/medlineplus/ency/article/003474.htm

read down in that article to low values. (liver failure)

She convinced me that I only had a bad gallbladder. I agreed to have it out.

When I woke up, my surgeon was there. The first thing out of my mouth was " did

you see my liver? " " what did it look like " ?. He patted me on my back and said, "

I'm sorry, you have cirrhosis. Macronodular type. " But look on the bright side,

at least you dont have portal hypertension. " Hanna, I had to diagnose my own

liver disease. And I had to diagnose my own portal hypertension. I have gotten

waaaaay off topic. What I did after that night was call the hepatology clinic

every day to check for a cancellation. Otherwise I would have had to wait

several months. Someone needs to get on the phone. This needs attention. In this

game, one needs to play hardball, lean forward. The " medicals " will DROP you

through the cracks if you #1. dont be your own advcate. In your dads case, he

may need someone's help. #2 squeek, and if you need to squeek LOUDLY. and #3

learn all you can about how the

liver works, you are going to be shocked at how many signs and symptoms you

have already missed. I had terrible nose bleeds, and bleeding hemroids, and had

no idea what soever that I could have bled to death. One nosebleed took over an

hour to stop. I was at work, and we were having thanksgiving for our crew, and I

just started bleeding, and I was trying to mop up the floor, and I had blood

every where. It l;ooked like a murder had occured in there. My shirt was solid

red from my chin to my belt. Get on the phone for your dad. You dont have to

wait for anyone. He may need a referral,m but that doesnt take anytime at all.

You take the first available, and then you call for cancellations. And if his

condition gets worse, take him to the ER at a transplant hospital. Usually it is

a university hospital.

http://www.massgene

<http://www.massgeneral.org/transplant/liver.asp?id=patients>

ral.org/transplant/liver.asp?id=patients

http://en.wikipedia

<http://en.wikipedia.org/wiki/Beth_Israel_Deaconess_Medical_Center>

..org/wiki/Beth_Israel_Deaconess_Medical_Center

http://www.transpla

<http://www.transplantliving.org/Community/members/membersDirectory.aspx?memberT\

ype=Transplant%20Centers%20by%20Organ & amp;organ=DLI & amp;state=ALL & amp;region= & am\

p;orderBy=i.ctr_cd>

ntliving.org/Community/members/membersDirectory.aspx?memberType=Transplant%20Cen\

ters%20by%20Organ & organ=DLI & state=ALL & region= & orderBy=i.ctr_cd

Re: Digest Number 1839

Thank you for the information Bobby.

I actually just spoke with my Dad tonight and he said he does not know what his

MELD number is but he is going to find out. I will for sure let you know what it

is when I do find it out. So, basically if you do have a higher number you have

a better chance of having a transplant? We are actually still waiting for an

appointment at the Lahey Clinic to even have him evaluated for the transplant.

I guess what I do not undrestand is his doctor that he has right now told him

that without a transplant he can't live a long life ....so he is in the process

of trying to get my Dad into the Lahey Clinic to speak with the Liver

Specialists up there to hopefully get him on the transplant list....BUT my

problem with this is that why is taking so long to get him an appointment set

up, it has been 5 weeks now.....I just want to say to him " this is my dad's

life " ....I just don;t feel that we should be waiting for the appointment for

such a long time...I know we will have to wait for the transplant for awhile but

all I ask is that we have the appointment with the Specialists. ....

Sorry to vent I just angry sometimes with these doctors...

Thanks again.

Hannah

__________________________________________________