question

[Guest guest]

Dear Lorraine, Hi My name is Bobby. I am 47 years old and am a moderator of this

group. I am no doctor, but I will tell you what I know about end stage liver

disease. It is technically " terminal liver disease " because the only known

treatment is a liver transplant.

There many many complications associated with it, and these can be treated, but

the disease itself is rather more like a " condition " , where an organ is ruined,

and doesn't function correctly anymore. Alcohol, obesity, hep C, and even

unknown things cause the liver to become scarred up, and the blood cannot flow

through it like it should. There is a massive vein which drapes over the small

and large intestines, which goes through the liver to filter blood. This is the

portal vein. The blood in the portal vein can actually back up because of the

scar tissue, and even flow backward. This causes many of the complications,

including bleeding iside the digestive tract, and mental status changes, and

even swelling in the belly and feet.

Varicies, encephalopathy, and ascites are three of the big complcations which

usually signal the need for the transplant evaluation. Pills are given to slow

down the swelling in the belly, and other pills are used to slow the heart, and

lessen the blood pressure to slow the creation of extra veins in the digestive

tract which tend to bleed. Lactulose which is non absorbency sugar helps with

the nasty toxins in the gut, and helps keep them out of the blood stream.

Diabetes can develop as a result of cirrhosis, but in my experience, it is

usually a cause rather than a complication. Hope this help answer some

questions Love, Bobby

________________________________

To: livercirrhosissupport

Sent: Mon, March 21, 2011 2:41:50 PM

Subject: Question

I was told about August 2010 that I had LC. I actually wasn't told, it was

written on a lab slip I needed to get more blood transfusions, 4 in all, plus 5

IV iron treatments. They said the blood thing was not associated with the liver

and now this new hemioncologist says it might be. I had a liver biopsy in

January of this year and it was totally positive. My question is that I have

received no treatment other than the above and does anyone have a blood disorder

to get along with this disea6rra5ne6rrse. My blood counts dropped very low and

my platelet count is also dropping. Is that the way it goes, no treatment until

you get worse? I thought they had meds that would help slow it down. My other

question is the Medtronic thingy you are talking about. Does diabetes or insulin

deficiency syndrome kick in after a while? If anybody has thoughts on the

above, I would love to hear them. Thanks. I am reading all the posts. You guys

are great!

[Guest guest]

I have a question that  some may be able to help with.    Four weeks  ago after

a  botched gallbladder removal, a portal vein was nicked and there was a loss of

blood supply to my husband's right lobe.   When they finally realized that he

was hemorrhaging  emergency surgery took place to  stop the blood.  Then

infection set in and more surgery was done to remove the  infected right

lobe--which I was told disintegrated during the surgery.  Yesterday the doctor

told me that after doing cat scans   he only lost 3/8 of this right lobe and it

appears that some blood is making its way into the right lobe from the left

lobe.    The doc said the left  lobe was looking better.  His bilurubins are 

down very significantly down below 5--don;t know exactly

I

He is  in intensive care 5 days alter and  of course is fighting 2 infections

with antibiotics. All his vitals are good controlled with medications.  His

urine output  is  good and  he is on a respirator to assist his breathing and to

allow him to heal.  I guess that is true judging from other patient families I

spoke to

 

 

 Can anyone offer any advice - general specific?  I keep getting told that it is

day to  day for now and recovery could take 3 months.  We do not care how long

but we do care about procedures being done right... of course...Yes he was a

drinker but not to extremes.  Yes he took lots of vitamins and was taking  over

the counter medications for pain etc.  And yes  years ago he  came down with an

unspecified illness in Mexico - high fever chills and it was never determined or

followed up on to see if it was a hepatitis strain.  It recurred several times

and then went away.

 

I wonder if they can figure that out years later...

thank you!

 

 

[Guest guest]

Yep....my hubby has been Stage 4 for 7 years now. He has had many, many

esophageal varices banded and  also has other symptoms of end stage. While his

stomach is huge,his hep doc says he does not have acites yet. He has an

ultrasound every 6 months top check for liver cancer....but the rest is a

waiting game. But aren't we all in that waiting game?  : )  

                                       

                                    Love,Jill

 

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Wednesday, November 30, 2011 11:42 PM

Subject: Re: Question

 

Of course, I am not a Dr; but, I do have cirrhosis.  My understanding is that

one could live a pretty normal life on just 20% of their liver; but, of course

remaining vigilant not to harm it.  No, stage 4 liver disease is classified as

End of Stage Liver Disease; but, it doesn't have to be the whole liver.  In

fact, there are many many folks that have been ESLD for over a decade.

All the while that the liver is being damaged, it is constantly making new paths

for the blood, because cirrhosis is killing that part.  That's why our liver

get very gnarly.  Someone has told me that it takes about 8 years for the liver

to completely mend itself.  I'm not sure that is true.

In 2004, I had my 1st biopsy.  It came back as stage 3 fibrosis bridging to

stage 4 cirrhosis.  I wonder now if the Dr. hit the right spot and that I was

actually already stage 4.  The only reason for wondering is because for me the

cirrhosis has caused my liver to be cancerous.

I know that other folks on this site will tell you lots.  Especially Bobby!! 

I swear that man knows more about the liver than most Drs do.

Gloria

________________________________

 

If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

Fran

[Guest guest]

I have ESLD and my doctor has been talking live donor.  I don't think that I

could ask anyone to do that for me...but that is me.  I am having to be drained

every 10 days and they usually get 8 to 15 liters of fluid...so my doctor has

suggested a TIPS procedure in hope that will slow down the fluid........OK I go

off subject.....thanks yall....I am a Texan.   

 

Lyncia

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Wednesday, November 30, 2011 10:42 PM

Subject: Re: Question

 

Of course, I am not a Dr; but, I do have cirrhosis.  My understanding is that

one could live a pretty normal life on just 20% of their liver; but, of course

remaining vigilant not to harm it.  No, stage 4 liver disease is classified as

End of Stage Liver Disease; but, it doesn't have to be the whole liver.  In

fact, there are many many folks that have been ESLD for over a decade.

All the while that the liver is being damaged, it is constantly making new paths

for the blood, because cirrhosis is killing that part.  That's why our liver

get very gnarly.  Someone has told me that it takes about 8 years for the liver

to completely mend itself.  I'm not sure that is true.

In 2004, I had my 1st biopsy.  It came back as stage 3 fibrosis bridging to

stage 4 cirrhosis.  I wonder now if the Dr. hit the right spot and that I was

actually already stage 4.  The only reason for wondering is because for me the

cirrhosis has caused my liver to be cancerous.

I know that other folks on this site will tell you lots.  Especially Bobby!! 

I swear that man knows more about the liver than most Drs do.

Gloria

________________________________

 

If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

Fran

[Guest guest]

Hi,

It has been a while since I posted (newbie with sister that needs a liver). My

sister is being drained about the same amount you are. What is a TIPS?

If you remember, live liver donor is what we are hoping for but I know it does

not come without risk and a big ask of someone.

As a sister I feel like it is my job to help ask for live liver donors since I

know my sister feels similar to you.

I didn't mean to go dark so quickly but soon after I sent my initial email I was

diagnoses with breast cancer so I've been dealing with that. This week was my

first back into the office.

I also have an auto immune issue (IGM switch defect) and I'm over 50 so recover

was a bit slow but everything is back up and running and I can focus on my

sister again.

Warm regards to all.

.

Re: Question

 

Of course, I am not a Dr; but, I do have cirrhosis.  My understanding is that

one could live a pretty normal life on just 20% of their liver; but, of course

remaining vigilant not to harm it.  No, stage 4 liver disease is classified as

End of Stage Liver Disease; but, it doesn't have to be the whole liver.  In

fact, there are many many folks that have been ESLD for over a decade.

All the while that the liver is being damaged, it is constantly making new paths

for the blood, because cirrhosis is killing that part.  That's why our liver

get very gnarly.  Someone has told me that it takes about 8 years for the liver

to completely mend itself.  I'm not sure that is true.

In 2004, I had my 1st biopsy.  It came back as stage 3 fibrosis bridging to

stage 4 cirrhosis.  I wonder now if the Dr. hit the right spot and that I was

actually already stage 4.  The only reason for wondering is because for me the

cirrhosis has caused my liver to be cancerous.

I know that other folks on this site will tell you lots.  Especially Bobby!! 

I swear that man knows more about the liver than most Drs do.

Gloria

________________________________

 

If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

Fran

[Guest guest]

This link explains TIPS.

 

http://www.hepatitis-central.com/hcv/whatis/shunt.html

 

Lyncia

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Thursday, December 1, 2011 10:43 AM

Subject: RE: Question

 

Hi,

It has been a while since I posted (newbie with sister that needs a liver). My

sister is being drained about the same amount you are. What is a TIPS?

If you remember, live liver donor is what we are hoping for but I know it does

not come without risk and a big ask of someone.

As a sister I feel like it is my job to help ask for live liver donors since I

know my sister feels similar to you.

I didn't mean to go dark so quickly but soon after I sent my initial email I was

diagnoses with breast cancer so I've been dealing with that. This week was my

first back into the office.

I also have an auto immune issue (IGM switch defect) and I'm over 50 so recover

was a bit slow but everything is back up and running and I can focus on my

sister again.

Warm regards to all.

.

Re: Question

 

Of course, I am not a Dr; but, I do have cirrhosis.  My understanding is that

one could live a pretty normal life on just 20% of their liver; but, of course

remaining vigilant not to harm it.  No, stage 4 liver disease is classified as

End of Stage Liver Disease; but, it doesn't have to be the whole liver.  In

fact, there are many many folks that have been ESLD for over a decade.

All the while that the liver is being damaged, it is constantly making new paths

for the blood, because cirrhosis is killing that part.  That's why our liver

get very gnarly.  Someone has told me that it takes about 8 years for the liver

to completely mend itself.  I'm not sure that is true.

In 2004, I had my 1st biopsy.  It came back as stage 3 fibrosis bridging to

stage 4 cirrhosis.  I wonder now if the Dr. hit the right spot and that I was

actually already stage 4.  The only reason for wondering is because for me the

cirrhosis has caused my liver to be cancerous.

I know that other folks on this site will tell you lots.  Especially Bobby!! 

I swear that man knows more about the liver than most Drs do.

Gloria

________________________________

 

If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

Fran

[Guest guest]

Ah... okay. My sister has mentioned that to me.

Thanks,

.

Re: Question

 

Of course, I am not a Dr; but, I do have cirrhosis.  My understanding is that

one could live a pretty normal life on just 20% of their liver; but, of course

remaining vigilant not to harm it.  No, stage 4 liver disease is classified as

End of Stage Liver Disease; but, it doesn't have to be the whole liver.  In

fact, there are many many folks that have been ESLD for over a decade.

All the while that the liver is being damaged, it is constantly making new paths

for the blood, because cirrhosis is killing that part.  That's why our liver

get very gnarly.  Someone has told me that it takes about 8 years for the liver

to completely mend itself.  I'm not sure that is true.

In 2004, I had my 1st biopsy.  It came back as stage 3 fibrosis bridging to

stage 4 cirrhosis.  I wonder now if the Dr. hit the right spot and that I was

actually already stage 4.  The only reason for wondering is because for me the

cirrhosis has caused my liver to be cancerous.

I know that other folks on this site will tell you lots.  Especially Bobby!! 

I swear that man knows more about the liver than most Drs do.

Gloria

________________________________

 

If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

Fran

[Guest guest]

Dear Fran, a diagnosis of " cirrhosis " usually means stage 4 fibrosis. It is a

state of the liver tissue, and not a clinical finding of the patient. Stage 3

fibrosis usually means a serious but possibly reversible condition, and does not

involve all of the liver. A good pathologist will not usually get them mixed up,

but we are all human. Stage 4 fibrosis, also known as " end stage liver disease "

is usually not reversible, and is considered " terminal liver disease " . It means

that the entire liver is completely scarred.

I hope this helps with any confusion. Love, Bobby

 

________________________________

From: f_fwb <no_reply >

To: livercirrhosissupport

Sent: Wednesday, November 30, 2011 8:57 PM

Subject: Question

 

If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

Fran

[Guest guest]

We have not been given a stage for my husband's cirrhosis. He has not had a

biopsy.

We have not had any doctor sit down and give us his time to explain cirrhosis,

even after I told the one who diagnosed him that I learned everything I knew by

reading the Internet. They just assume you went to med school?

As far as I can recall, it was the ultra sound that resulted in the diagnosis,

along with the doctor's observations of my husband's physical features, such as

the shape of his legs.

Fran

>

> Dear Fran, a diagnosis of " cirrhosis " usually means stage 4 fibrosis. It is a

state of the liver tissue, and not a clinical finding of the patient. Stage 3

fibrosis usually means a serious but possibly reversible condition, and does not

involve all of the liver. A good pathologist will not usually get them mixed up,

but we are all human. Stage 4 fibrosis, also known as " end stage liver disease "

is usually not reversible, and is considered " terminal liver disease " . It means

that the entire liver is completely scarred.

>

> I hope this helps with any confusion. Love, Bobby

>

>  

>

>

> ________________________________

> From: f_fwb <no_reply >

> To: livercirrhosissupport

> Sent: Wednesday, November 30, 2011 8:57 PM

> Subject: Question

>

>

>  

> If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

>

> Fran

>

>

>

>

>

[Guest guest]

hi lyncia,wherein tx do you live? i live in houston and go to the tx liver

center.they told me that to get a living donor i would have to to go to the east

coast because they don't do them here in tx.my brother was going to give me part

of his but they said no and that the risk to the donor is higher then the

recepitant.and i personally could not risk that.

 

lol

bev,tx

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Thursday, December 1, 2011 12:08 PM

Subject: RE: Question

 

Ah... okay. My sister has mentioned that to me.

Thanks,

.

Re: Question

 

Of course, I am not a Dr; but, I do have cirrhosis.  My understanding is that

one could live a pretty normal life on just 20% of their liver; but, of course

remaining vigilant not to harm it.  No, stage 4 liver disease is classified as

End of Stage Liver Disease; but, it doesn't have to be the whole liver.  In

fact, there are many many folks that have been ESLD for over a decade.

All the while that the liver is being damaged, it is constantly making new paths

for the blood, because cirrhosis is killing that part.  That's why our liver

get very gnarly.  Someone has told me that it takes about 8 years for the liver

to completely mend itself.  I'm not sure that is true.

In 2004, I had my 1st biopsy.  It came back as stage 3 fibrosis bridging to

stage 4 cirrhosis.  I wonder now if the Dr. hit the right spot and that I was

actually already stage 4.  The only reason for wondering is because for me the

cirrhosis has caused my liver to be cancerous.

I know that other folks on this site will tell you lots.  Especially Bobby!! 

I swear that man knows more about the liver than most Drs do.

Gloria

________________________________

 

If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

Fran

[Guest guest]

Since we have focused on live liver donor we have also been given that pushback.

They feel more comfortable with a couple of our options because they are so tall

(6'6 " and 6' 5 " ) which apparently means their livers are larger and the smaller

portion of the liver can be used thus less risky to the donor.

This is just how we've been told at Stanford.

I'm sure it is frustrating to have a donor but not given the option. We have

felt that way with various donor options.

.

Re: Question

 

Of course, I am not a Dr; but, I do have cirrhosis.  My understanding is that

one could live a pretty normal life on just 20% of their liver; but, of course

remaining vigilant not to harm it.  No, stage 4 liver disease is classified as

End of Stage Liver Disease; but, it doesn't have to be the whole liver.  In

fact, there are many many folks that have been ESLD for over a decade.

All the while that the liver is being damaged, it is constantly making new paths

for the blood, because cirrhosis is killing that part.  That's why our liver

get very gnarly.  Someone has told me that it takes about 8 years for the liver

to completely mend itself.  I'm not sure that is true.

In 2004, I had my 1st biopsy.  It came back as stage 3 fibrosis bridging to

stage 4 cirrhosis.  I wonder now if the Dr. hit the right spot and that I was

actually already stage 4.  The only reason for wondering is because for me the

cirrhosis has caused my liver to be cancerous.

I know that other folks on this site will tell you lots.  Especially Bobby!! 

I swear that man knows more about the liver than most Drs do.

Gloria

________________________________

 

If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

Fran

[Guest guest]

Bev,

 

I am in Dallas.  I go to the Liver Institute and was told that Baylor in Dallas

are now doing the living donor and also Mayo in Nevada (?).

 

Let me know if you come this way.

 

Lyncia

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Friday, December 2, 2011 2:42 AM

Subject: Re: Question

 

hi lyncia,wherein tx do you live? i live in houston and go to the tx liver

center.they told me that to get a living donor i would have to to go to the east

coast because they don't do them here in tx.my brother was going to give me part

of his but they said no and that the risk to the donor is higher then the

recepitant.and i personally could not risk that.

 

lol

bev,tx

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Thursday, December 1, 2011 12:08 PM

Subject: RE: Question

 

Ah... okay. My sister has mentioned that to me.

Thanks,

.

Re: Question

 

Of course, I am not a Dr; but, I do have cirrhosis.  My understanding is that

one could live a pretty normal life on just 20% of their liver; but, of course

remaining vigilant not to harm it.  No, stage 4 liver disease is classified as

End of Stage Liver Disease; but, it doesn't have to be the whole liver.  In

fact, there are many many folks that have been ESLD for over a decade.

All the while that the liver is being damaged, it is constantly making new paths

for the blood, because cirrhosis is killing that part.  That's why our liver

get very gnarly.  Someone has told me that it takes about 8 years for the liver

to completely mend itself.  I'm not sure that is true.

In 2004, I had my 1st biopsy.  It came back as stage 3 fibrosis bridging to

stage 4 cirrhosis.  I wonder now if the Dr. hit the right spot and that I was

actually already stage 4.  The only reason for wondering is because for me the

cirrhosis has caused my liver to be cancerous.

I know that other folks on this site will tell you lots.  Especially Bobby!! 

I swear that man knows more about the liver than most Drs do.

Gloria

________________________________

 

If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

Fran

[Guest guest]

Dear Fran, this sounds very very unusual.  I am only a friend, not a

professional doctor, and cannot give out medical advice, but when a member tells

me that they have not had a biopsy, I get very suspicious. It is a difficult

road to travel without a map, and a definitive diagnosis gives us a very

specific map.  If it were me or my loved one, I would trust only the  very

very best Hepatologist at a high end transplant center like Cleveland clinic or

Vanderbuilt or Loma to make a diagnosis without a biopsy. Needle biopsy is

the gold standard for diagnosis of end stage liver disease. Have you ever

considered a second opinion? Love, Bobby

________________________________

From: f_fwb <no_reply >

To: livercirrhosissupport

Sent: Thursday, December 1, 2011 10:16 PM

Subject: Re: Question

 

We have not been given a stage for my husband's cirrhosis. He has not had a

biopsy.

We have not had any doctor sit down and give us his time to explain cirrhosis,

even after I told the one who diagnosed him that I learned everything I knew by

reading the Internet. They just assume you went to med school?

As far as I can recall, it was the ultra sound that resulted in the diagnosis,

along with the doctor's observations of my husband's physical features, such as

the shape of his legs.

Fran

>

> Dear Fran, a diagnosis of " cirrhosis " usually means stage 4 fibrosis. It is a

state of the liver tissue, and not a clinical finding of the patient. Stage 3

fibrosis usually means a serious but possibly reversible condition, and does not

involve all of the liver. A good pathologist will not usually get them mixed up,

but we are all human. Stage 4 fibrosis, also known as " end stage liver disease "

is usually not reversible, and is considered " terminal liver disease " . It means

that the entire liver is completely scarred.

>

> I hope this helps with any confusion. Love, Bobby

>

>  

>

>

> ________________________________

> From: f_fwb <no_reply >

> To: livercirrhosissupport

> Sent: Wednesday, November 30, 2011 8:57 PM

> Subject: Question

>

>

>  

> If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

>

> Fran

>

>

>

>

>

[Guest guest]

bobby,

i have asked my hepatolgist several times about having a biopsy of my liver and

they told me it was only nessasary if it wasn't clear on the ultrasound and mri

scans.they did say that over half of my liver is cirrhosis.another thing i am

really confused about is the meld score my keeps going from 20 to 13 it changes

in from month to month and i feel worse all the time now.sometimes i am so tired

of fighting this. just some of my thoughts.

bev,tx

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Friday, December 2, 2011 3:33 PM

Subject: Re: Question

 

Dear Fran, this sounds very very unusual.  I am only a friend, not a

professional doctor, and cannot give out medical advice, but when a member tells

me that they have not had a biopsy, I get very suspicious. It is a difficult

road to travel without a map, and a definitive diagnosis gives us a very

specific map.  If it were me or my loved one, I would trust only the  very

very best Hepatologist at a high end transplant center like Cleveland clinic or

Vanderbuilt or Loma to make a diagnosis without a biopsy. Needle biopsy is

the gold standard for diagnosis of end stage liver disease. Have you ever

considered a second opinion? Love, Bobby

________________________________

From: f_fwb <no_reply >

To: livercirrhosissupport

Sent: Thursday, December 1, 2011 10:16 PM

Subject: Re: Question

 

We have not been given a stage for my husband's cirrhosis. He has not had a

biopsy.

We have not had any doctor sit down and give us his time to explain cirrhosis,

even after I told the one who diagnosed him that I learned everything I knew by

reading the Internet. They just assume you went to med school?

As far as I can recall, it was the ultra sound that resulted in the diagnosis,

along with the doctor's observations of my husband's physical features, such as

the shape of his legs.

Fran

>

> Dear Fran, a diagnosis of " cirrhosis " usually means stage 4 fibrosis. It is a

state of the liver tissue, and not a clinical finding of the patient. Stage 3

fibrosis usually means a serious but possibly reversible condition, and does not

involve all of the liver. A good pathologist will not usually get them mixed up,

but we are all human. Stage 4 fibrosis, also known as " end stage liver disease "

is usually not reversible, and is considered " terminal liver disease " . It means

that the entire liver is completely scarred.

>

> I hope this helps with any confusion. Love, Bobby

>

>  

>

>

> ________________________________

> From: f_fwb <no_reply >

> To: livercirrhosissupport

> Sent: Wednesday, November 30, 2011 8:57 PM

> Subject: Question

>

>

>  

> If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

>

> Fran

>

>

>

>

>

[Guest guest]

Ed's hepatologist diagnosed him without a biopsy. Dr is the Asst head of

the Dept of Hepatology and also part of thr transplant team at The Cleveland

Clinic. He said a biopsy is invasive and not necessary in Ed's case as Ed has

alot of other problems that can only stem from Cirrhosis.  We go back up next

week for a check up...ultrasound and doc visit. Ed is not having an EGD thios

time because his insurance changed and he says i;'s too expensive and he feels

good right now....and says he feels so bad after having an EGD with

bandings..... Soooooo I guess he will simply bleed out one day.  Do I sound

callous? I'm just tired of Ed burying his head in the sand and pretending it

will be okay. It's hard! My friend's husband died in August after having pretty

much the same attitude as Ed.. Ed has been so lucky for about 7 years

now.....how much longer can his luck hold?

                                  

 

 

 

 

                                Love,Jill

 

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Friday, December 2, 2011 6:33 PM

Subject: Re: Question

 

Dear Fran, this sounds very very unusual.  I am only a friend, not a

professional doctor, and cannot give out medical advice, but when a member tells

me that they have not had a biopsy, I get very suspicious. It is a difficult

road to travel without a map, and a definitive diagnosis gives us a very

specific map.  If it were me or my loved one, I would trust only the  very

very best Hepatologist at a high end transplant center like Cleveland clinic or

Vanderbuilt or Loma to make a diagnosis without a biopsy. Needle biopsy is

the gold standard for diagnosis of end stage liver disease. Have you ever

considered a second opinion? Love, Bobby

________________________________

From: f_fwb <no_reply >

To: livercirrhosissupport

Sent: Thursday, December 1, 2011 10:16 PM

Subject: Re: Question

 

We have not been given a stage for my husband's cirrhosis. He has not had a

biopsy.

We have not had any doctor sit down and give us his time to explain cirrhosis,

even after I told the one who diagnosed him that I learned everything I knew by

reading the Internet. They just assume you went to med school?

As far as I can recall, it was the ultra sound that resulted in the diagnosis,

along with the doctor's observations of my husband's physical features, such as

the shape of his legs.

Fran

>

> Dear Fran, a diagnosis of " cirrhosis " usually means stage 4 fibrosis. It is a

state of the liver tissue, and not a clinical finding of the patient. Stage 3

fibrosis usually means a serious but possibly reversible condition, and does not

involve all of the liver. A good pathologist will not usually get them mixed up,

but we are all human. Stage 4 fibrosis, also known as " end stage liver disease "

is usually not reversible, and is considered " terminal liver disease " . It means

that the entire liver is completely scarred.

>

> I hope this helps with any confusion. Love, Bobby

>

>  

>

>

> ________________________________

> From: f_fwb <no_reply >

> To: livercirrhosissupport

> Sent: Wednesday, November 30, 2011 8:57 PM

> Subject: Question

>

>

>  

> If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

>

> Fran

>

>

>

>

>

[Guest guest]

We are each responsible for our own heath...I found that out with my hubby who

had heart problemsI told him I will cook for him but he wanted the bad stuff...

he tried the last year but it was to late for himI am very lonely now I did my

best to take care of him...but it was up to him to be well

Annie

> To: livercirrhosissupport

> From: jillkstewart@...

> Date: Fri, 2 Dec 2011 21:31:32 -0800

> Subject: Re: Question

>

>

>

> Ed's hepatologist diagnosed him without a biopsy. Dr is the Asst head

of the Dept of Hepatology and also part of thr transplant team at The Cleveland

Clinic. He said a biopsy is invasive and not necessary in Ed's case as Ed has

alot of other problems that can only stem from Cirrhosis. We go back up next

week for a check up...ultrasound and doc visit. Ed is not having an EGD thios

time because his insurance changed and he says i;'s too expensive and he feels

good right now....and says he feels so bad after having an EGD with

bandings..... Soooooo I guess he will simply bleed out one day. Do I sound

callous? I'm just tired of Ed burying his head in the sand and pretending it

will be okay. It's hard! My friend's husband died in August after having pretty

much the same attitude as Ed.. Ed has been so lucky for about 7 years

now.....how much longer can his luck hold?

>

>

>

>

>

> Love,Jill

>

> We don't remember days, we remember moments.

> Life is not measured by the breaths we take,but by the moments that take our

breath away.

>

>

> ________________________________

>

> To: " livercirrhosissupport "

<livercirrhosissupport >

> Sent: Friday, December 2, 2011 6:33 PM

> Subject: Re: Question

>

>

>

> Dear Fran, this sounds very very unusual. I am only a friend, not a

professional doctor, and cannot give out medical advice, but when a member tells

me that they have not had a biopsy, I get very suspicious. It is a difficult

road to travel without a map, and a definitive diagnosis gives us a very

specific map. If it were me or my loved one, I would trust only the very very

best Hepatologist at a high end transplant center like Cleveland clinic or

Vanderbuilt or Loma to make a diagnosis without a biopsy. Needle biopsy is

the gold standard for diagnosis of end stage liver disease. Have you ever

considered a second opinion? Love, Bobby

>

> ________________________________

> From: f_fwb <no_reply >

> To: livercirrhosissupport

> Sent: Thursday, December 1, 2011 10:16 PM

> Subject: Re: Question

>

>

>

> We have not been given a stage for my husband's cirrhosis. He has not had a

biopsy.

> We have not had any doctor sit down and give us his time to explain cirrhosis,

even after I told the one who diagnosed him that I learned everything I knew by

reading the Internet. They just assume you went to med school?

> As far as I can recall, it was the ultra sound that resulted in the diagnosis,

along with the doctor's observations of my husband's physical features, such as

the shape of his legs.

>

> Fran

>

>

> >

> > Dear Fran, a diagnosis of " cirrhosis " usually means stage 4 fibrosis. It is

a state of the liver tissue, and not a clinical finding of the patient. Stage 3

fibrosis usually means a serious but possibly reversible condition, and does not

involve all of the liver. A good pathologist will not usually get them mixed up,

but we are all human. Stage 4 fibrosis, also known as " end stage liver disease "

is usually not reversible, and is considered " terminal liver disease " . It means

that the entire liver is completely scarred.

> >

> > I hope this helps with any confusion. Love, Bobby

> >

> > Â

> >

> >

> > ________________________________

> > From: f_fwb <no_reply >

> > To: livercirrhosissupport

> > Sent: Wednesday, November 30, 2011 8:57 PM

> > Subject: Question

> >

> >

> > Â

> > If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

> >

> > Fran

> >

> >

> >

> >

> >

[Guest guest]

You're right,Annie. It's hard to watch,tho!

                                       

                                    Love,Jill

 

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

________________________________

To: liver cirrhosis support <livercirrhosissupport >

Sent: Saturday, December 3, 2011 12:35 AM

Subject: RE: Question

 

We are each responsible for our own heath...I found that out with my hubby who

had heart problemsI told him I will cook for him but he wanted the bad stuff...

he tried the last year but it was to late for himI am very lonely now I did my

best to take care of him...but it was up to him to be well

Annie

> To: livercirrhosissupport

> From: jillkstewart@...

> Date: Fri, 2 Dec 2011 21:31:32 -0800

> Subject: Re: Question

>

>

>

> Ed's hepatologist diagnosed him without a biopsy. Dr is the Asst head

of the Dept of Hepatology and also part of thr transplant team at The Cleveland

Clinic. He said a biopsy is invasive and not necessary in Ed's case as Ed has

alot of other problems that can only stem from Cirrhosis. We go back up next

week for a check up...ultrasound and doc visit. Ed is not having an EGD thios

time because his insurance changed and he says i;'s too expensive and he feels

good right now....and says he feels so bad after having an EGD with

bandings..... Soooooo I guess he will simply bleed out one day. Do I sound

callous? I'm just tired of Ed burying his head in the sand and pretending it

will be okay. It's hard! My friend's husband died in August after having pretty

much the same attitude as Ed.. Ed has been so lucky for about 7 years

now.....how much longer can his luck hold?

>

>

>

>

>

> Love,Jill

>

> We don't remember days, we remember moments.

> Life is not measured by the breaths we take,but by the moments that take our

breath away.

>

>

> ________________________________

>

> To: " livercirrhosissupport "

<livercirrhosissupport >

> Sent: Friday, December 2, 2011 6:33 PM

> Subject: Re: Question

>

>

>

> Dear Fran, this sounds very very unusual. I am only a friend, not a

professional doctor, and cannot give out medical advice, but when a member tells

me that they have not had a biopsy, I get very suspicious. It is a difficult

road to travel without a map, and a definitive diagnosis gives us a very

specific map. If it were me or my loved one, I would trust only the very very

best Hepatologist at a high end transplant center like Cleveland clinic or

Vanderbuilt or Loma to make a diagnosis without a biopsy. Needle biopsy is

the gold standard for diagnosis of end stage liver disease. Have you ever

considered a second opinion? Love, Bobby

>

> ________________________________

> From: f_fwb <no_reply >

> To: livercirrhosissupport

> Sent: Thursday, December 1, 2011 10:16 PM

> Subject: Re: Question

>

>

>

> We have not been given a stage for my husband's cirrhosis. He has not had a

biopsy.

> We have not had any doctor sit down and give us his time to explain cirrhosis,

even after I told the one who diagnosed him that I learned everything I knew by

reading the Internet. They just assume you went to med school?

> As far as I can recall, it was the ultra sound that resulted in the diagnosis,

along with the doctor's observations of my husband's physical features, such as

the shape of his legs.

>

> Fran

>

>

> >

> > Dear Fran, a diagnosis of " cirrhosis " usually means stage 4 fibrosis. It is

a state of the liver tissue, and not a clinical finding of the patient. Stage 3

fibrosis usually means a serious but possibly reversible condition, and does not

involve all of the liver. A good pathologist will not usually get them mixed up,

but we are all human. Stage 4 fibrosis, also known as " end stage liver disease "

is usually not reversible, and is considered " terminal liver disease " . It means

that the entire liver is completely scarred.

> >

> > I hope this helps with any confusion. Love, Bobby

> >

> > Â

> >

> >

> > ________________________________

> > From: f_fwb <no_reply >

> > To: livercirrhosissupport

> > Sent: Wednesday, November 30, 2011 8:57 PM

> > Subject: Question

> >

> >

> > Â

> > If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

> >

> > Fran

> >

> >

> >

> >

> >

[Guest guest]

yes,,, my hubby kept going till the day before he passed..which was aug

7th...very fresh in my mind

Annie

> To: livercirrhosissupport

> From: jillkstewart@...

> Date: Fri, 2 Dec 2011 21:49:13 -0800

> Subject: Re: Question

>

> You're right,Annie. It's hard to watch,tho!

>

>

>

> Love,Jill

>

> We don't remember days, we remember moments.

> Life is not measured by the breaths we take,but by the moments that take our

breath away.

>

>

> ________________________________

>

> To: liver cirrhosis support <livercirrhosissupport >

> Sent: Saturday, December 3, 2011 12:35 AM

> Subject: RE: Question

>

>

>

>

>

> We are each responsible for our own heath...I found that out with my hubby who

had heart problemsI told him I will cook for him but he wanted the bad stuff...

he tried the last year but it was to late for himI am very lonely now I did my

best to take care of him...but it was up to him to be well

> Annie

> > To: livercirrhosissupport

> > From: jillkstewart@...

> > Date: Fri, 2 Dec 2011 21:31:32 -0800

> > Subject: Re: Question

> >

> >

> >

> > Ed's hepatologist diagnosed him without a biopsy. Dr is the Asst head

of the Dept of Hepatology and also part of thr transplant team at The Cleveland

Clinic. He said a biopsy is invasive and not necessary in Ed's case as Ed has

alot of other problems that can only stem from Cirrhosis. We go back up next

week for a check up...ultrasound and doc visit. Ed is not having an EGD thios

time because his insurance changed and he says i;'s too expensive and he feels

good right now....and says he feels so bad after having an EGD with

bandings..... Soooooo I guess he will simply bleed out one day. Do I sound

callous? I'm just tired of Ed burying his head in the sand and pretending it

will be okay. It's hard! My friend's husband died in August after having pretty

much the same attitude as Ed.. Ed has been so lucky for about 7 years

now.....how much longer can his luck hold?

> >

> >

> >

> >

> >

> > Love,Jill

> >

> > We don't remember days, we remember moments.

> > Life is not measured by the breaths we take,but by the moments that take our

breath away.

> >

> >

> > ________________________________

> >

> > To: " livercirrhosissupport "

<livercirrhosissupport >

> > Sent: Friday, December 2, 2011 6:33 PM

> > Subject: Re: Question

> >

> >

> >

> > Dear Fran, this sounds very very unusual. I am only a friend, not a

professional doctor, and cannot give out medical advice, but when a member tells

me that they have not had a biopsy, I get very suspicious. It is a difficult

road to travel without a map, and a definitive diagnosis gives us a very

specific map. If it were me or my loved one, I would trust only the very very

best Hepatologist at a high end transplant center like Cleveland clinic or

Vanderbuilt or Loma to make a diagnosis without a biopsy. Needle biopsy is

the gold standard for diagnosis of end stage liver disease. Have you ever

considered a second opinion? Love, Bobby

> >

> > ________________________________

> > From: f_fwb <no_reply >

> > To: livercirrhosissupport

> > Sent: Thursday, December 1, 2011 10:16 PM

> > Subject: Re: Question

> >

> >

> >

> > We have not been given a stage for my husband's cirrhosis. He has not had a

biopsy.

> > We have not had any doctor sit down and give us his time to explain

cirrhosis, even after I told the one who diagnosed him that I learned everything

I knew by reading the Internet. They just assume you went to med school?

> > As far as I can recall, it was the ultra sound that resulted in the

diagnosis, along with the doctor's observations of my husband's physical

features, such as the shape of his legs.

> >

> > Fran

> >

> >

> > >

> > > Dear Fran, a diagnosis of " cirrhosis " usually means stage 4 fibrosis. It

is a state of the liver tissue, and not a clinical finding of the patient. Stage

3 fibrosis usually means a serious but possibly reversible condition, and does

not involve all of the liver. A good pathologist will not usually get them mixed

up, but we are all human. Stage 4 fibrosis, also known as " end stage liver

disease " is usually not reversible, and is considered " terminal liver disease " .

It means that the entire liver is completely scarred.

> > >

> > > I hope this helps with any confusion. Love, Bobby

> > >

> > > Â

> > >

> > >

> > > ________________________________

> > > From: f_fwb <no_reply >

> > > To: livercirrhosissupport

> > > Sent: Wednesday, November 30, 2011 8:57 PM

> > > Subject: Question

> > >

> > >

> > > Â

> > > If one has cirrhosis, does that mean it is the entire liver? If not, can

the undamaged portion of the liver regenerate itself?

> > >

> > > Fran

> > >

> > >

> > >

> > >

> > >

[Guest guest]

I can appreciate some of these comments. My sister stopped taking her

medication for a week because she was just sick of it all. Unfortunately, it

landed her in the hospital and the rest of us needed to jump in and help. While

I didn't think that was fair to all of her caregivers at the same time I could

appreciate why she did it because I have had many medical issues myself (IGM

switch defect - autoimmune, cancer recently, etc). You just get sick of being

sick. (I'm sure most of you understand.) Ultimately, she is a grown woman and

has her free agency.

I was with her when she was first diagnosed. I cried because I had been ill for

a few years and had an idea what was ahead of her. Many times I wish that I

could give her my liver so one of us could move on as one complete healthy

person. :-) Thank goodness I was with her when her varices (sp?) burst. It is

so hard to watch someone you love suffer.

My heart goes out to all of you who are struggling with health issues. The

liver is an amazing organ and until my sisters diagnosis I really didn't

understand the complexity or the number of functions the liver is responsible

for. Kinda made me feel like I should put my hand over my liver vs hand over my

heart. :-)

I appreciate each day I feel well enough to enjoy a sunset, work, travel or

doing something/anything. Each day and moment is a gift.

Warm regards,

.

Question

> >

> >

> > Â

> > If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

> >

> > Fran

> >

> >

> >

> >

> >

[Guest guest]

Jill

Exactly the thing - none of us know how long we have!!  You know, I feel

blessed somehow, because I have a warning.  The warning is to get my affairs in

order.  Not that my husband would have done it; but, he didn't get much of a

warning.

________________________________

 

Yep....my hubby has been Stage 4 for 7 years now. He has had many, many

esophageal varices banded and  also has other symptoms of end stage. While his

stomach is huge,his hep doc says he does not have acites yet. He has an

ultrasound every 6 months top check for liver cancer....but the rest is a

waiting game. But aren't we all in that waiting game?  : )  

                                       

                                    Love,Jill

 

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Wednesday, November 30, 2011 11:42 PM

Subject: Re: Question

 

Of course, I am not a Dr; but, I do have cirrhosis.  My understanding is that

one could live a pretty normal life on just 20% of their liver; but, of course

remaining vigilant not to harm it.  No, stage 4 liver disease is classified as

End of Stage Liver Disease; but, it doesn't have to be the whole liver.  In

fact, there are many many folks that have been ESLD for over a decade.

All the while that the liver is being damaged, it is constantly making new paths

for the blood, because cirrhosis is killing that part.  That's why our liver

get very gnarly.  Someone has told me that it takes about 8 years for the liver

to completely mend itself.  I'm not sure that is true.

In 2004, I had my 1st biopsy.  It came back as stage 3 fibrosis bridging to

stage 4 cirrhosis.  I wonder now if the Dr. hit the right spot and that I was

actually already stage 4.  The only reason for wondering is because for me the

cirrhosis has caused my liver to be cancerous.

I know that other folks on this site will tell you lots.  Especially Bobby!! 

I swear that man knows more about the liver than most Drs do.

Gloria

________________________________

 

If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

Fran

[Guest guest]

With an auto immune issue, I doubt that you would be classified as a

candidate.  

I'm sorry to hear about your own cancer.  That's a lot for family members of

both of you to deal with.  I lost a baby brother at 51 yrs old to colon cancer

last January.  It was such a shock for all of us.  So, when I had to go and

tell my Mom that my cancer is back - she started to cry.  Honestly, I think

I've seen my mother cry, maybe 5 times in my life.  It's so hard to lose the

people we love.

________________________________

 

Hi,

It has been a while since I posted (newbie with sister that needs a liver). My

sister is being drained about the same amount you are. What is a TIPS?

If you remember, live liver donor is what we are hoping for but I know it does

not come without risk and a big ask of someone.

As a sister I feel like it is my job to help ask for live liver donors since I

know my sister feels similar to you.

I didn't mean to go dark so quickly but soon after I sent my initial email I was

diagnoses with breast cancer so I've been dealing with that. This week was my

first back into the office.

I also have an auto immune issue (IGM switch defect) and I'm over 50 so recover

was a bit slow but everything is back up and running and I can focus on my

sister again.

Warm regards to all.

.

Re: Question

 

Of course, I am not a Dr; but, I do have cirrhosis.  My understanding is that

one could live a pretty normal life on just 20% of their liver; but, of course

remaining vigilant not to harm it.  No, stage 4 liver disease is classified as

End of Stage Liver Disease; but, it doesn't have to be the whole liver.  In

fact, there are many many folks that have been ESLD for over a decade.

All the while that the liver is being damaged, it is constantly making new paths

for the blood, because cirrhosis is killing that part.  That's why our liver

get very gnarly.  Someone has told me that it takes about 8 years for the liver

to completely mend itself.  I'm not sure that is true.

In 2004, I had my 1st biopsy.  It came back as stage 3 fibrosis bridging to

stage 4 cirrhosis.  I wonder now if the Dr. hit the right spot and that I was

actually already stage 4.  The only reason for wondering is because for me the

cirrhosis has caused my liver to be cancerous.

I know that other folks on this site will tell you lots.  Especially Bobby!! 

I swear that man knows more about the liver than most Drs do.

Gloria

________________________________

 

If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

Fran

[Guest guest]

For me it was my mother who offered.  Thank heavens she's far too old to

donate.  I could not live with that on my conscience if it turned her health. 

Besides, I didn't tell her; but, with her heart issues, she would never have

been a candidate. 

________________________________

 

hi lyncia,wherein tx do you live? i live in houston and go to the tx liver

center.they told me that to get a living donor i would have to to go to the east

coast because they don't do them here in tx.my brother was going to give me part

of his but they said no and that the risk to the donor is higher then the

recepitant.and i personally could not risk that.

 

lol

bev,tx

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Thursday, December 1, 2011 12:08 PM

Subject: RE: Question

 

Ah... okay. My sister has mentioned that to me.

Thanks,

.

Re: Question

 

Of course, I am not a Dr; but, I do have cirrhosis.  My understanding is that

one could live a pretty normal life on just 20% of their liver; but, of course

remaining vigilant not to harm it.  No, stage 4 liver disease is classified as

End of Stage Liver Disease; but, it doesn't have to be the whole liver.  In

fact, there are many many folks that have been ESLD for over a decade.

All the while that the liver is being damaged, it is constantly making new paths

for the blood, because cirrhosis is killing that part.  That's why our liver

get very gnarly.  Someone has told me that it takes about 8 years for the liver

to completely mend itself.  I'm not sure that is true.

In 2004, I had my 1st biopsy.  It came back as stage 3 fibrosis bridging to

stage 4 cirrhosis.  I wonder now if the Dr. hit the right spot and that I was

actually already stage 4.  The only reason for wondering is because for me the

cirrhosis has caused my liver to be cancerous.

I know that other folks on this site will tell you lots.  Especially Bobby!! 

I swear that man knows more about the liver than most Drs do.

Gloria

________________________________

 

If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

Fran

[Guest guest]

Oh Jill

I sooo understand the " husband sticking head in the sand " syndrome.  I too

lived with it for 21 years.  Then, his time ran out!!  I just have to wonder

how long he was really sick and would not, go to a Dr.  For heaven's sake, I

was in the city hospital for 2 weeks and I know he was extremely sick then.  At

least, now I know.  I always figured that my husband didn't want to make a

decision and continually left everything up to me.  THEN of course he would

bit-h if it didn't go his way...  Somehow, I think I was to blame for his lung

cancer even.

Gloria

________________________________

Ed's hepatologist diagnosed him without a biopsy. Dr is the Asst head of

the Dept of Hepatology and also part of thr transplant team at The Cleveland

Clinic. He said a biopsy is invasive and not necessary in Ed's case as Ed has

alot of other problems that can only stem from Cirrhosis.  We go back up next

week for a check up...ultrasound and doc visit. Ed is not having an EGD thios

time because his insurance changed and he says i;'s too expensive and he feels

good right now....and says he feels so bad after having an EGD with

bandings..... Soooooo I guess he will simply bleed out one day.  Do I sound

callous? I'm just tired of Ed burying his head in the sand and pretending it

will be okay. It's hard! My friend's husband died in August after having pretty

much the same attitude as Ed.. Ed has been so lucky for about 7 years

now.....how much longer can his luck hold?

                                  

 

 

 

 

                                Love,Jill

 

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Friday, December 2, 2011 6:33 PM

Subject: Re: Question

 

Dear Fran, this sounds very very unusual.  I am only a friend, not a

professional doctor, and cannot give out medical advice, but when a member tells

me that they have not had a biopsy, I get very suspicious. It is a difficult

road to travel without a map, and a definitive diagnosis gives us a very

specific map.  If it were me or my loved one, I would trust only the  very

very best Hepatologist at a high end transplant center like Cleveland clinic or

Vanderbuilt or Loma to make a diagnosis without a biopsy. Needle biopsy is

the gold standard for diagnosis of end stage liver disease. Have you ever

considered a second opinion? Love, Bobby

________________________________

From: f_fwb <no_reply >

To: livercirrhosissupport

Sent: Thursday, December 1, 2011 10:16 PM

Subject: Re: Question

 

We have not been given a stage for my husband's cirrhosis. He has not had a

biopsy.

We have not had any doctor sit down and give us his time to explain cirrhosis,

even after I told the one who diagnosed him that I learned everything I knew by

reading the Internet. They just assume you went to med school?

As far as I can recall, it was the ultra sound that resulted in the diagnosis,

along with the doctor's observations of my husband's physical features, such as

the shape of his legs.

Fran

>

> Dear Fran, a diagnosis of " cirrhosis " usually means stage 4 fibrosis. It is a

state of the liver tissue, and not a clinical finding of the patient. Stage 3

fibrosis usually means a serious but possibly reversible condition, and does not

involve all of the liver. A good pathologist will not usually get them mixed up,

but we are all human. Stage 4 fibrosis, also known as " end stage liver disease "

is usually not reversible, and is considered " terminal liver disease " . It means

that the entire liver is completely scarred.

>

> I hope this helps with any confusion. Love, Bobby

>

>  

>

>

> ________________________________

> From: f_fwb <no_reply >

> To: livercirrhosissupport

> Sent: Wednesday, November 30, 2011 8:57 PM

> Subject: Question

>

>

>  

> If one has cirrhosis, does that mean it is the entire liver? If not, can the

undamaged portion of the liver regenerate itself?

>

> Fran

>

>

>

>

>

[Guest guest]

I am so sorry to hear of your loss, Annie!!  My husband made sure that he'd

pushed me so far away that I didn't even live at home.  So, actually we were

separated for 6 months before he died.  I had another memory just today.  I

had called him in Dec last year so that I could get some of the Christmas

decorations.  When he couldn't talk me out of coming to the home and pick for

myself - he made sure that I didn't see him.  He knew....

________________________________

 

yes,,, my hubby kept going till the day before he passed..which was aug

7th...very fresh in my mind

Annie

> To: livercirrhosissupport

> From: jillkstewart@...

> Date: Fri, 2 Dec 2011 21:49:13 -0800

> Subject: Re: Question

>

> You're right,Annie. It's hard to watch,tho!

>

>

>

> Love,Jill

>

> We don't remember days, we remember moments.

> Life is not measured by the breaths we take,but by the moments that take our

breath away.

>

>

> ________________________________

>

> To: liver cirrhosis support <livercirrhosissupport >

> Sent: Saturday, December 3, 2011 12:35 AM

> Subject: RE: Question

>

>

>

>

>

> We are each responsible for our own heath...I found that out with my hubby who

had heart problemsI told him I will cook for him but he wanted the bad stuff...

he tried the last year but it was to late for himI am very lonely now I did my

best to take care of him...but it was up to him to be well

> Annie

> > To: livercirrhosissupport

> > From: jillkstewart@...

> > Date: Fri, 2 Dec 2011 21:31:32 -0800

> > Subject: Re: Question

> >

> >

> >

> > Ed's hepatologist diagnosed him without a biopsy. Dr is the Asst head

of the Dept of Hepatology and also part of thr transplant team at The Cleveland

Clinic. He said a biopsy is invasive and not necessary in Ed's case as Ed has

alot of other problems that can only stem from Cirrhosis. We go back up next

week for a check up...ultrasound and doc visit. Ed is not having an EGD thios

time because his insurance changed and he says i;'s too expensive and he feels

good right now....and says he feels so bad after having an EGD with

bandings..... Soooooo I guess he will simply bleed out one day. Do I sound

callous? I'm just tired of Ed burying his head in the sand and pretending it

will be okay. It's hard! My friend's husband died in August after having pretty

much the same attitude as Ed.. Ed has been so lucky for about 7 years

now.....how much longer can his luck hold?

> >

> >

> >

> >

> >

> > Love,Jill

> >

> > We don't remember days, we remember moments.

> > Life is not measured by the breaths we take,but by the moments that take our

breath away.

> >

> >

> > ________________________________

> >

> > To: " livercirrhosissupport "

<livercirrhosissupport >

> > Sent: Friday, December 2, 2011 6:33 PM

> > Subject: Re: Question

> >

> >

> >

> > Dear Fran, this sounds very very unusual. I am only a friend, not a

professional doctor, and cannot give out medical advice, but when a member tells

me that they have not had a biopsy, I get very suspicious. It is a difficult

road to travel without a map, and a definitive diagnosis gives us a very

specific map. If it were me or my loved one, I would trust only the very very

best Hepatologist at a high end transplant center like Cleveland clinic or

Vanderbuilt or Loma to make a diagnosis without a biopsy. Needle biopsy is

the gold standard for diagnosis of end stage liver disease. Have you ever

considered a second opinion? Love, Bobby

> >

> > ________________________________

> > From: f_fwb <no_reply >

> > To: livercirrhosissupport

> > Sent: Thursday, December 1, 2011 10:16 PM

> > Subject: Re: Question

> >

> >

> >

> > We have not been given a stage for my husband's cirrhosis. He has not had a

biopsy.

> > We have not had any doctor sit down and give us his time to explain

cirrhosis, even after I told the one who diagnosed him that I learned everything

I knew by reading the Internet. They just assume you went to med school?

> > As far as I can recall, it was the ultra sound that resulted in the

diagnosis, along with the doctor's observations of my husband's physical

features, such as the shape of his legs.

> >

> > Fran

> >

> >

> > >

> > > Dear Fran, a diagnosis of " cirrhosis " usually means stage 4 fibrosis. It

is a state of the liver tissue, and not a clinical finding of the patient. Stage

3 fibrosis usually means a serious but possibly reversible condition, and does

not involve all of the liver. A good pathologist will not usually get them mixed

up, but we are all human. Stage 4 fibrosis, also known as " end stage liver

disease " is usually not reversible, and is considered " terminal liver disease " .

It means that the entire liver is completely scarred.

> > >

> > > I hope this helps with any confusion. Love, Bobby

> > >

> > > Â

> > >

> > >

> > > ________________________________

> > > From: f_fwb <no_reply >

> > > To: livercirrhosissupport

> > > Sent: Wednesday, November 30, 2011 8:57 PM

> > > Subject: Question

> > >

> > >

> > > Â

> > > If one has cirrhosis, does that mean it is the entire liver? If not, can

the undamaged portion of the liver regenerate itself?

> > >

> > > Fran

> > >

> > >

> > >

> > >

> > >

[Guest guest]

awwww my hubby and I were very close we depended on each other and I so miss

him

Annie

> To: livercirrhosissupport

> From: gadamscan@...

> Date: Sat, 3 Dec 2011 20:22:14 -0800

> Subject: Re: Question

>

> I am so sorry to hear of your loss, Annie!! My husband made sure that he'd

pushed me so far away that I didn't even live at home. So, actually we were

separated for 6 months before he died. I had another memory just today. I had

called him in Dec last year so that I could get some of the Christmas

decorations. When he couldn't talk me out of coming to the home and pick for

myself - he made sure that I didn't see him. He knew....

>

>

>

> ________________________________

>

>

>

>

> yes,,, my hubby kept going till the day before he passed..which was aug

7th...very fresh in my mind

>

> Annie

> > To: livercirrhosissupport

> > From: jillkstewart@...

> > Date: Fri, 2 Dec 2011 21:49:13 -0800

> > Subject: Re: Question

> >

> > You're right,Annie. It's hard to watch,tho!

> >

> >

> >

> > Love,Jill

> >

> > We don't remember days, we remember moments.

> > Life is not measured by the breaths we take,but by the moments that take our

breath away.

> >

> >

> > ________________________________

> >

> > To: liver cirrhosis support <livercirrhosissupport >

> > Sent: Saturday, December 3, 2011 12:35 AM

> > Subject: RE: Question

> >

> >

> >

> >

> >

> > We are each responsible for our own heath...I found that out with my hubby

who had heart problemsI told him I will cook for him but he wanted the bad

stuff... he tried the last year but it was to late for himI am very lonely now I

did my best to take care of him...but it was up to him to be well

> > Annie

> > > To: livercirrhosissupport

> > > From: jillkstewart@...

> > > Date: Fri, 2 Dec 2011 21:31:32 -0800

> > > Subject: Re: Question

> > >

> > >

> > >

> > > Ed's hepatologist diagnosed him without a biopsy. Dr is the Asst

head of the Dept of Hepatology and also part of thr transplant team at The

Cleveland Clinic. He said a biopsy is invasive and not necessary in Ed's case as

Ed has alot of other problems that can only stem from Cirrhosis. We go back up

next week for a check up...ultrasound and doc visit. Ed is not having an EGD

thios time because his insurance changed and he says i;'s too expensive and he

feels good right now....and says he feels so bad after having an EGD with

bandings..... Soooooo I guess he will simply bleed out one day. Do I sound

callous? I'm just tired of Ed burying his head in the sand and pretending it

will be okay. It's hard! My friend's husband died in August after having pretty

much the same attitude as Ed.. Ed has been so lucky for about 7 years

now.....how much longer can his luck hold?

> > >

> > >

> > >

> > >

> > >

> > > Love,Jill

> > >

> > > We don't remember days, we remember moments.

> > > Life is not measured by the breaths we take,but by the moments that take

our breath away.

> > >

> > >

> > > ________________________________

> > >

> > > To: " livercirrhosissupport "

<livercirrhosissupport >

> > > Sent: Friday, December 2, 2011 6:33 PM

> > > Subject: Re: Question

> > >

> > >

> > >

> > > Dear Fran, this sounds very very unusual. I am only a friend, not a

professional doctor, and cannot give out medical advice, but when a member tells

me that they have not had a biopsy, I get very suspicious. It is a difficult

road to travel without a map, and a definitive diagnosis gives us a very

specific map. If it were me or my loved one, I would trust only the very very

best Hepatologist at a high end transplant center like Cleveland clinic or

Vanderbuilt or Loma to make a diagnosis without a biopsy. Needle biopsy is

the gold standard for diagnosis of end stage liver disease. Have you ever

considered a second opinion? Love, Bobby

> > >

> > > ________________________________

> > > From: f_fwb <no_reply >

> > > To: livercirrhosissupport

> > > Sent: Thursday, December 1, 2011 10:16 PM

> > > Subject: Re: Question

> > >

> > >

> > >

> > > We have not been given a stage for my husband's cirrhosis. He has not had

a biopsy.

> > > We have not had any doctor sit down and give us his time to explain

cirrhosis, even after I told the one who diagnosed him that I learned everything

I knew by reading the Internet. They just assume you went to med school?

> > > As far as I can recall, it was the ultra sound that resulted in the

diagnosis, along with the doctor's observations of my husband's physical

features, such as the shape of his legs.

> > >

> > > Fran

> > >

> > >

> > > >

> > > > Dear Fran, a diagnosis of " cirrhosis " usually means stage 4 fibrosis. It

is a state of the liver tissue, and not a clinical finding of the patient. Stage

3 fibrosis usually means a serious but possibly reversible condition, and does

not involve all of the liver. A good pathologist will not usually get them mixed

up, but we are all human. Stage 4 fibrosis, also known as " end stage liver

disease " is usually not reversible, and is considered " terminal liver disease " .

It means that the entire liver is completely scarred.

> > > >

> > > > I hope this helps with any confusion. Love, Bobby

> > > >

> > > > Â

> > > >

> > > >

> > > > ________________________________

> > > > From: f_fwb <no_reply >

> > > > To: livercirrhosissupport

> > > > Sent: Wednesday, November 30, 2011 8:57 PM

> > > > Subject: Question

> > > >

> > > >

> > > > Â

> > > > If one has cirrhosis, does that mean it is the entire liver? If not, can

the undamaged portion of the liver regenerate itself?

> > > >

> > > > Fran

> > > >

> > > >

> > > >

> > > >

> > > >