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Oh Carole

I am sorry to be meeting you under such confusing circumstances!!  I, too, like

to be told the truth and nothing but the truth and especially about my health. 

After all, this is my body to live in for however much time I'm given.  You

were very smart to get all that information for yourself.  I find that most

people don't seem to know that it's all available to you, the patient.

I found out that I had Hep C in early 2002.  After the shock, came the

questions - when, where or how.  I did learn that it answered a question I'd

had about fatigue.  Also, I'd had the same Dr for about 14 years; but, realized

that for one, at that time, I was not in the target group for a suspicion.  It

was thought then, that Hep C was an IV drug addicts disease and I wasn't one. 

The only symptom I may have had, was these total fatigue days and I had never

said anything to the Dr. because it happened so seldom.

By 2004, it was decided to send me to a specialist in our small town.  He set

up a liver biopsy to be done.  Well, then I was in for the 2nd biggest surprise

of my life.  My liver damage was stage 3 bridging to stage 4 (cirrhosis).  By

this time, I had not had a drop of alcohol for about 18 yrs.  So, I had to lift

my chin off the floor and get prepared.  My point in telling you this, is to

tell you that although our livers are a vital organ, it seldom gives us any hint

that it's hurting, until it's too late.

In the following 6 years,I did 2 Hep C treatments and my liver crossed over and

was cirrhotic before the 2nd one.  I am Hep C free now; but, traded it for

liver cancer as a result of the cirrhosis.  In Apr 2010, I had what they call a

liver resection and from everything I've read, that was 2nd only to a

transplant.  However, the cancer was back 15 months later and I knew what the

writing on the wall meant.

To this very moment, I have never felt any pain or hint from my liver, that it's

sick.  In fact, the fatigue from a sick liver has eased up somewhat and is

giving me the time to get caught up and give my business away.  I think that

asking a Dr about the time frame we have left, is normal.  However, since they

are not God (although some think they are) their guess is as good as our own. 

I've done just about everything that I can, to get my affairs in order and just

working on catching up with my business.  Then, I want to get myself a very

comfortable outside lounge chair, so that I'll be outside under my tarp (I live

in my RV), lounging and listening to Yanni.  The dream of doing that is

exciting in itself, since I haven't had much time off really, since 2004.

The reason I do not have a problem with what is going to happen, is that I have

a very strong spiritual faith.  To me, this is not the end of life; but, just

another part of it.  I'm sad for the ones I have to leave behind; but,

unfortunately, I can't fix that.  I'll just spend as much time as I can, with

those that are closest to me.  Also, as I realized one of my best friends is

getting ready for, is to be supportive to my one and only child, my son.  It'll

likely be just as important for this one great-niece, since we are very close

and she's living with me now.  I love her as if she was really my own daughter.

Finally, I am here to help support you with anything you need.  If you would

like to talk with me privately, please feel free to do so on my email addy.

Gloria

________________________________

 

Hello everyone.

I have been a silent member for a few months, too overwhelmed and emotional to

write. I feel I can write some of my story now and see what you all think.

When I turned 60 last Jan. I decided that I needed a health base line and went

to Mayo Clinic in Arizona twice for about 4 months total. They ran over 100

tests on me.

The reason I went to Mayo is we live in Arkansas and the doctors come here when

they can't get a job anywhere else and don't want to be watched closely. They

are not up on the latest of anything and about 20-30 yrs behind California.in

knowledge and skill.

One example is my 3 yr old Grandaughter was taken to the doctor for the

possibility of flu....Dr. said she had a sinus infection and sent her home with

antibiotics. Within 12 hours she was dead. Turns out she had a heart

infection! Nothing was done about the Doctor not running any tests on her.

Mayo discovered I have stage 4 severe liver fibrosis/cirrosis....I had NO IDEA I

had anything wrong with my liver. My local doctor I'd seen for 15 yrs and

thought was good.

Mayo Clinic was very confusing, and they were confused too. Seems I have lots

of bad liver results, but then other tests aren't so bad and they didn't offer

me any advice because they didn't know what was going on. I was so

shocked...they refused to tell me it was stage 4, refused to tell me how long I

might have left, said there no treatment, I couldn't have a transplant, and I

was too severe to have even a biopsy and they wouldn't do anything but say I had

NASH. (I'm LDS and didn't drink etc). They gave me no info, 2 recommendations

only after I asked and both of them no longer work in Oklahoma. I didn't know

what to do.

I came back with a 3 inch binder of test results, reports, xrays,

scans...everything the hospital had, I had a copy of it. I took it

to my Doctor of 15 yrs he did not look at a SINGLE PAGE and started YELLING at

me in disgust, telling me that there was nothing wrong with my liver and I'd

wasted my time etc. He ran his own tests that would show that I had some

problems, but he said my liver was fine!! I'd never been treated so horrible by

a doctor. These 'hick town' doctors still think they are God and make no

mistakes. He yelled at me that he would order that biopsy as there was nothing

wrong. I can't believe a Doctor from Arkansas thought he was above a place like

Mayo!

Need I say I fired him? I also found out that there are no liver doctors

around here, no support groups and no grief counselors. I am totally on my own.

I spent hours and hours online looking up each test and what it meant. I didn't

even get my MELD score or know anything from it from Mayo Clinic!!!

I didn't know what to do, who to turn to, I was on my own. I finally after 2

months got to see a Doctor in Oklahoma and I took my big binder, my research and

told her I wanted a BLUNT opinion of where I was at with my liver. She knew

exactly how

it happened (untreated fatty liver diagnosed 10 yrs ago!) , I had a meld score

of 7-8, and was stage 4 . All this I already knew...and found out before she

cofirmed it. She said a biopsy wasn't necessary as I was too far along for any

kind of treatment etc. She even said I could eat what I wanted because I was

too far along and knowing wouldn't make a difference.

Then I see my new liver Doctor and she said that my kind of disease isn't

evident like HepC etc...I won't turn yellow and tests results will be confusing.

She was going to write them letters to inform them I' that I'm indeed much worse

than I look....and how the tests will give wierd answers.

Did anyone else on this list get conflicting info and opinions from every doctor

they saw?

Did anyone have their friends and family say " Oh, so and so had that and lived

20 yrs " ....they don't understand I've had a problem for over 12 yrs! I'm not

just starting...I'm already at the end.

What test results would you like to see on this board so you can help me make

sense of all this confusion?

So I have no support except this group. I don't know anything of what to expect

from this illness...what symptoms are.

I'm loosing weight and my liver octor didn't realize I didn't know it was a

symptom. I'm sleepy a lot....found out that is a symptom. I also have times I

stay up 30+ hours and then sleep for 24....anyone else do that?

The way I see it is Arkansas doctors killed my Grandaughter and by their neglect

have killed me....and they will go along in their God place and not think twice

about it.

Sorry for rambling...it is I'm bouncing off the walls because I don't know what

to expect.

Thanks

Carole

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Thank you for your response Gloria...I so appreciate it. Does cirrhosis always

turn into cancer? Mayo Clinic wanted to do a Bone biopsy but they decided I

might not make it and didn't do it either.

I have always had these sleeping problems. In HS I would come home and go to

sleep at 2:30pm and sleep all night.

I also have sometimes severe heart problem....it feels like my heart has stopped

and just like I think a heart attack would feel. I've had it checked but it

only happens when it wants to and so an EKG is always normal. I also have valve

damage from taking phen fen,. However, this spasm also I've had since HS....but

it is much worse when it occurs now and lasts longer and pain is in jaw,

shoulders, arms, chest and lasts a couple minutes that feel like forever.

I have discomfort in my liver and enlarged spleen a lot. Not always, but I

never forget its there.

I'm hoping to get answers to the following questions:

--Did anyone else on this list get conflicting info and opinions from every

doctor they saw?

==Did anyone have their friends and family say " Oh, so and so had that and lived

20 yrs " ....they don't understand I've had a problem for over 12 yrs! I'm not

just starting...I'm already at the end.

==What test results would you like to see on this board so you can help me make

sense of all this confusion?

==What symptoms should I expect?

==Why is it when a doctor does a test and it is normal then they ignore the

problem instead of looking further? Even Mayo did not run an ammonia test or a

AFN for cancer test.

==what is it like to die from this? What can I expect? Is it drawn out or

quick once my liver is no longer compensated by my spleen? (again Mayo never

told me this either).

Thanks

Carole

---- Gloria wrote:

=============

Oh Carole

I am sorry to be meeting you under such confusing circumstances!!  I, too, like

to be told the truth and nothing but the truth and especially about my health. 

After all, this is my body to live in for however much time I'm given.  You

were very smart to get all that information for yourself.  I find that most

people don't seem to know that it's all available to you, the patient.

I found out that I had Hep C in early 2002.  After the shock, came the

questions - when, where or how.  I did learn that it answered a question I'd

had about fatigue.  Also, I'd had the same Dr for about 14 years; but, realized

that for one, at that time, I was not in the target group for a suspicion.  It

was thought then, that Hep C was an IV drug addicts disease and I wasn't one. 

The only symptom I may have had, was these total fatigue days and I had never

said anything to the Dr. because it happened so seldom.

By 2004, it was decided to send me to a specialist in our small town.  He set

up a liver biopsy to be done.  Well, then I was in for the 2nd biggest surprise

of my life.  My liver damage was stage 3 bridging to stage 4 (cirrhosis).  By

this time, I had not had a drop of alcohol for about 18 yrs.  So, I had to lift

my chin off the floor and get prepared.  My point in telling you this, is to

tell you that although our livers are a vital organ, it seldom gives us any hint

that it's hurting, until it's too late.

In the following 6 years,I did 2 Hep C treatments and my liver crossed over and

was cirrhotic before the 2nd one.  I am Hep C free now; but, traded it for

liver cancer as a result of the cirrhosis.  In Apr 2010, I had what they call a

liver resection and from everything I've read, that was 2nd only to a

transplant.  However, the cancer was back 15 months later and I knew what the

writing on the wall meant.

To this very moment, I have never felt any pain or hint from my liver, that it's

sick.  In fact, the fatigue from a sick liver has eased up somewhat and is

giving me the time to get caught up and give my business away.  I think that

asking a Dr about the time frame we have left, is normal.  However, since they

are not God (although some think they are) their guess is as good as our own. 

I've done just about everything that I can, to get my affairs in order and just

working on catching up with my business.  Then, I want to get myself a very

comfortable outside lounge chair, so that I'll be outside under my tarp (I live

in my RV), lounging and listening to Yanni.  The dream of doing that is

exciting in itself, since I haven't had much time off really, since 2004.

The reason I do not have a problem with what is going to happen, is that I have

a very strong spiritual faith.  To me, this is not the end of life; but, just

another part of it.  I'm sad for the ones I have to leave behind; but,

unfortunately, I can't fix that.  I'll just spend as much time as I can, with

those that are closest to me.  Also, as I realized one of my best friends is

getting ready for, is to be supportive to my one and only child, my son.  It'll

likely be just as important for this one great-niece, since we are very close

and she's living with me now.  I love her as if she was really my own daughter.

Finally, I am here to help support you with anything you need.  If you would

like to talk with me privately, please feel free to do so on my email addy.

Gloria

________________________________

 

Hello everyone.

I have been a silent member for a few months, too overwhelmed and emotional to

write. I feel I can write some of my story now and see what you all think.

When I turned 60 last Jan. I decided that I needed a health base line and went

to Mayo Clinic in Arizona twice for about 4 months total. They ran over 100

tests on me.

The reason I went to Mayo is we live in Arkansas and the doctors come here when

they can't get a job anywhere else and don't want to be watched closely. They

are not up on the latest of anything and about 20-30 yrs behind California.in

knowledge and skill.

One example is my 3 yr old Grandaughter was taken to the doctor for the

possibility of flu....Dr. said she had a sinus infection and sent her home with

antibiotics. Within 12 hours she was dead. Turns out she had a heart

infection! Nothing was done about the Doctor not running any tests on her.

Mayo discovered I have stage 4 severe liver fibrosis/cirrosis....I had NO IDEA I

had anything wrong with my liver. My local doctor I'd seen for 15 yrs and

thought was good.

Mayo Clinic was very confusing, and they were confused too. Seems I have lots

of bad liver results, but then other tests aren't so bad and they didn't offer

me any advice because they didn't know what was going on. I was so

shocked...they refused to tell me it was stage 4, refused to tell me how long I

might have left, said there no treatment, I couldn't have a transplant, and I

was too severe to have even a biopsy and they wouldn't do anything but say I had

NASH. (I'm LDS and didn't drink etc). They gave me no info, 2 recommendations

only after I asked and both of them no longer work in Oklahoma. I didn't know

what to do.

I came back with a 3 inch binder of test results, reports, xrays,

scans...everything the hospital had, I had a copy of it. I took it

to my Doctor of 15 yrs he did not look at a SINGLE PAGE and started YELLING at

me in disgust, telling me that there was nothing wrong with my liver and I'd

wasted my time etc. He ran his own tests that would show that I had some

problems, but he said my liver was fine!! I'd never been treated so horrible by

a doctor. These 'hick town' doctors still think they are God and make no

mistakes. He yelled at me that he would order that biopsy as there was nothing

wrong. I can't believe a Doctor from Arkansas thought he was above a place like

Mayo!

Need I say I fired him? I also found out that there are no liver doctors

around here, no support groups and no grief counselors. I am totally on my own.

I spent hours and hours online looking up each test and what it meant. I didn't

even get my MELD score or know anything from it from Mayo Clinic!!!

I didn't know what to do, who to turn to, I was on my own. I finally after 2

months got to see a Doctor in Oklahoma and I took my big binder, my research and

told her I wanted a BLUNT opinion of where I was at with my liver. She knew

exactly how

it happened (untreated fatty liver diagnosed 10 yrs ago!) , I had a meld score

of 7-8, and was stage 4 . All this I already knew...and found out before she

cofirmed it. She said a biopsy wasn't necessary as I was too far along for any

kind of treatment etc. She even said I could eat what I wanted because I was

too far along and knowing wouldn't make a difference.

Then I see my new liver Doctor and she said that my kind of disease isn't

evident like HepC etc...I won't turn yellow and tests results will be confusing.

She was going to write them letters to inform them I' that I'm indeed much worse

than I look....and how the tests will give wierd answers.

Did anyone else on this list get conflicting info and opinions from every doctor

they saw?

Did anyone have their friends and family say " Oh, so and so had that and lived

20 yrs " ....they don't understand I've had a problem for over 12 yrs! I'm not

just starting...I'm already at the end.

What test results would you like to see on this board so you can help me make

sense of all this confusion?

So I have no support except this group. I don't know anything of what to expect

from this illness...what symptoms are.

I'm loosing weight and my liver octor didn't realize I didn't know it was a

symptom. I'm sleepy a lot....found out that is a symptom. I also have times I

stay up 30+ hours and then sleep for 24....anyone else do that?

The way I see it is Arkansas doctors killed my Grandaughter and by their neglect

have killed me....and they will go along in their God place and not think twice

about it.

Sorry for rambling...it is I'm bouncing off the walls because I don't know what

to expect.

Thanks

Carole

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Carolear your story is pretty much the same as my husband's.

His liver profiles from lab work looks great, but apparently he has cryptogenic

cirrhosis also.

Nothing much to do for it but to enjoy each day as best you can.

I tell everyone to find things to laugh about, as that is good therapy. We are

in MS and in the five years here have not had our clothes off in the drs.

office.

Interesting medical practice. I am thinking taking one of those Chinese dolls

and pointing to the part that hurts is probably as good as any way of having a

physical.

Jackie

Confused and frustrated newbie

Hello everyone.

I have been a silent member for a few months, too overwhelmed and emotional to

write. I feel I can write some of my story now and see what you all think.

When I turned 60 last Jan. I decided that I needed a health base line and went

to Mayo Clinic in Arizona twice for about 4 months total. They ran over 100

tests on me.

The reason I went to Mayo is we live in Arkansas and the doctors come here

when they can't get a job anywhere else and don't want to be watched closely.

They are not up on the latest of anything and about 20-30 yrs behind

California.in knowledge and skill.

One example is my 3 yr old Grandaughter was taken to the doctor for the

possibility of flu....Dr. said she had a sinus infection and sent her home with

antibiotics. Within 12 hours she was dead. Turns out she had a heart infection!

Nothing was done about the Doctor not running any tests on her.

Mayo discovered I have stage 4 severe liver fibrosis/cirrosis....I had NO IDEA

I had anything wrong with my liver. My local doctor I'd seen for 15 yrs and

thought was good.

Mayo Clinic was very confusing, and they were confused too. Seems I have lots

of bad liver results, but then other tests aren't so bad and they didn't offer

me any advice because they didn't know what was going on. I was so

shocked...they refused to tell me it was stage 4, refused to tell me how long I

might have left, said there no treatment, I couldn't have a transplant, and I

was too severe to have even a biopsy and they wouldn't do anything but say I had

NASH. (I'm LDS and didn't drink etc). They gave me no info, 2 recommendations

only after I asked and both of them no longer work in Oklahoma. I didn't know

what to do.

I came back with a 3 inch binder of test results, reports, xrays,

scans...everything the hospital had, I had a copy of it. I took it

to my Doctor of 15 yrs he did not look at a SINGLE PAGE and started YELLING at

me in disgust, telling me that there was nothing wrong with my liver and I'd

wasted my time etc. He ran his own tests that would show that I had some

problems, but he said my liver was fine!! I'd never been treated so horrible by

a doctor. These 'hick town' doctors still think they are God and make no

mistakes. He yelled at me that he would order that biopsy as there was nothing

wrong. I can't believe a Doctor from Arkansas thought he was above a place like

Mayo!

Need I say I fired him? I also found out that there are no liver doctors

around here, no support groups and no grief counselors. I am totally on my own.

I spent hours and hours online looking up each test and what it meant. I

didn't even get my MELD score or know anything from it from Mayo Clinic!!!

I didn't know what to do, who to turn to, I was on my own. I finally after 2

months got to see a Doctor in Oklahoma and I took my big binder, my research and

told her I wanted a BLUNT opinion of where I was at with my liver. She knew

exactly how

it happened (untreated fatty liver diagnosed 10 yrs ago!) , I had a meld score

of 7-8, and was stage 4 . All this I already knew...and found out before she

cofirmed it. She said a biopsy wasn't necessary as I was too far along for any

kind of treatment etc. She even said I could eat what I wanted because I was too

far along and knowing wouldn't make a difference.

Then I see my new liver Doctor and she said that my kind of disease isn't

evident like HepC etc...I won't turn yellow and tests results will be confusing.

She was going to write them letters to inform them I' that I'm indeed much worse

than I look....and how the tests will give wierd answers.

Did anyone else on this list get conflicting info and opinions from every

doctor they saw?

Did anyone have their friends and family say " Oh, so and so had that and lived

20 yrs " ....they don't understand I've had a problem for over 12 yrs! I'm not

just starting...I'm already at the end.

What test results would you like to see on this board so you can help me make

sense of all this confusion?

So I have no support except this group. I don't know anything of what to

expect from this illness...what symptoms are.

I'm loosing weight and my liver octor didn't realize I didn't know it was a

symptom. I'm sleepy a lot....found out that is a symptom. I also have times I

stay up 30+ hours and then sleep for 24....anyone else do that?

The way I see it is Arkansas doctors killed my Grandaughter and by their

neglect have killed me....and they will go along in their God place and not

think twice about it.

Sorry for rambling...it is I'm bouncing off the walls because I don't know

what to expect.

Thanks

Carole

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Today was an absolutely beautiful day here where I live.  It's likely the only

ray of sunshine we are going to have over the next weeks.  We are in our winter

rains and wind out on the west coast.  However, I couldn't help smiling as I

was driving into town.  It was a little reminder to me, to enjoy thisday!!

________________________________

 

Carolear your story is pretty much the same as my husband's.

His liver profiles from lab work looks great, but apparently he has cryptogenic

cirrhosis also.

Nothing much to do for it but to enjoy each day as best you can.

I tell everyone to find things to laugh about, as that is good therapy. We are

in MS and in the five years here have not had our clothes off in the drs.

office.

Interesting medical practice. I am thinking taking one of those Chinese dolls

and pointing to the part that hurts is probably as good as any way of having a

physical.

Jackie

Confused and frustrated newbie

Hello everyone.

I have been a silent member for a few months, too overwhelmed and emotional to

write. I feel I can write some of my story now and see what you all think.

When I turned 60 last Jan. I decided that I needed a health base line and went

to Mayo Clinic in Arizona twice for about 4 months total. They ran over 100

tests on me.

The reason I went to Mayo is we live in Arkansas and the doctors come here when

they can't get a job anywhere else and don't want to be watched closely. They

are not up on the latest of anything and about 20-30 yrs behind California.in

knowledge and skill.

One example is my 3 yr old Grandaughter was taken to the doctor for the

possibility of flu....Dr. said she had a sinus infection and sent her home with

antibiotics. Within 12 hours she was dead. Turns out she had a heart infection!

Nothing was done about the Doctor not running any tests on her.

Mayo discovered I have stage 4 severe liver fibrosis/cirrosis....I had NO IDEA I

had anything wrong with my liver. My local doctor I'd seen for 15 yrs and

thought was good.

Mayo Clinic was very confusing, and they were confused too. Seems I have lots of

bad liver results, but then other tests aren't so bad and they didn't offer me

any advice because they didn't know what was going on. I was so shocked...they

refused to tell me it was stage 4, refused to tell me how long I might have

left, said there no treatment, I couldn't have a transplant, and I was too

severe to have even a biopsy and they wouldn't do anything but say I had NASH.

(I'm LDS and didn't drink etc). They gave me no info, 2 recommendations only

after I asked and both of them no longer work in Oklahoma. I didn't know what to

do.

I came back with a 3 inch binder of test results, reports, xrays,

scans...everything the hospital had, I had a copy of it. I took it

to my Doctor of 15 yrs he did not look at a SINGLE PAGE and started YELLING at

me in disgust, telling me that there was nothing wrong with my liver and I'd

wasted my time etc. He ran his own tests that would show that I had some

problems, but he said my liver was fine!! I'd never been treated so horrible by

a doctor. These 'hick town' doctors still think they are God and make no

mistakes. He yelled at me that he would order that biopsy as there was nothing

wrong. I can't believe a Doctor from Arkansas thought he was above a place like

Mayo!

Need I say I fired him? I also found out that there are no liver doctors around

here, no support groups and no grief counselors. I am totally on my own.

I spent hours and hours online looking up each test and what it meant. I didn't

even get my MELD score or know anything from it from Mayo Clinic!!!

I didn't know what to do, who to turn to, I was on my own. I finally after 2

months got to see a Doctor in Oklahoma and I took my big binder, my research and

told her I wanted a BLUNT opinion of where I was at with my liver. She knew

exactly how

it happened (untreated fatty liver diagnosed 10 yrs ago!) , I had a meld score

of 7-8, and was stage 4 . All this I already knew...and found out before she

cofirmed it. She said a biopsy wasn't necessary as I was too far along for any

kind of treatment etc. She even said I could eat what I wanted because I was too

far along and knowing wouldn't make a difference.

Then I see my new liver Doctor and she said that my kind of disease isn't

evident like HepC etc...I won't turn yellow and tests results will be confusing.

She was going to write them letters to inform them I' that I'm indeed much worse

than I look....and how the tests will give wierd answers.

Did anyone else on this list get conflicting info and opinions from every doctor

they saw?

Did anyone have their friends and family say " Oh, so and so had that and lived

20 yrs " ....they don't understand I've had a problem for over 12 yrs! I'm not

just starting...I'm already at the end.

What test results would you like to see on this board so you can help me make

sense of all this confusion?

So I have no support except this group. I don't know anything of what to expect

from this illness...what symptoms are.

I'm loosing weight and my liver octor didn't realize I didn't know it was a

symptom. I'm sleepy a lot....found out that is a symptom. I also have times I

stay up 30+ hours and then sleep for 24....anyone else do that?

The way I see it is Arkansas doctors killed my Grandaughter and by their neglect

have killed me....and they will go along in their God place and not think twice

about it.

Sorry for rambling...it is I'm bouncing off the walls because I don't know what

to expect.

Thanks

Carole

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Dear Carole... My name is Bobby. I am one of the moderators of this group. I was

diagnosed after watching my best friend die from alcoholic induced liver

cirrhosis. It was a gut wrenching experience needless to say.

I quit drinking, and went looking for the reason for the severe pain I was

having in my upper left quadrant. Doctors kept on saying that they were sure

that I was just imagining things because of my recently lost loved one. I had

learned several medical terms in taking care of her, and they thought I was

projecting liver disease upon myself out of grief. 

My doctor was so doubtful of me having liver disease that she very tersely

stated that " I will go kicking and screaming along with you having a liver

biopsy! " She was sure that  my problem was my gallbladder, and so had me

convince a surgeon to take it out. I asked him to have a looksee when he was in

there at my liver and to biopsy it if he saw anything that looked like

cirrhosis. I woke up from the surgery with him patting me on the shoulder being

told " Im sorry, you do have cirrhosis. I asked him, totally in tears " which part

has cirrhosis? " and he said " all of it " .

Upon me telling my family, I was hit with the " so and so lived with this for

years and years " . 

My wife called up my primary care doctor to ask for a liver transplant

evaluation referral. She said there was silence on the other end for a long

while, because the doctor was in shock.

So I joined this group. Here are some things I found out from this group, and my

experience which I hope is helpful...

I am alive today.

I will be alive until I die.

Life is good.

The needle biopsy is the GOLD standard for the diagnosis of liver disease.

The MELD score goes from 7 to 40 with 40 being the sickest.

Unless a person has had a NEEDLE BIOPSY, then there is a chance that they might

not have cirrhosis.

Even the country's foremost expert could make a misdiagnosis.

The point is that if it were me, I would want the biopsy. I would fight for it.

I still might.

The reason I say this is that the A-hole doctor who did mine used an electo

cautery tool and did a " wedge biopsy " . 

The hepatologist at CU was reluctant to trust it, because the capsule of the

liver is part of the sample, and contains a huge amount of fibrosis, since it is

made of fibrosis.

If the day when I might need a transplant comes around and the transplant team

is in any doubt of my diagnosis, that wedge biopsy could hurt my chances.

Carole, you have come to the right place. We all have what you have and will be

your friend, and share our stories with you. I am sorry for all the crap you had

to go through to get your answers. You are pretty smart to realize that " they "

couldn't be trusted. Doctors have to win my trust, one visit at a time. I fired

two  doctors on the road to my diagnosis. in the mean time, I am going to link

my story again, even though I just did this.  Here is the blog for my loved one

Ardis. She lighted the way for me. I always offered to quit drinking with here

in a show of solidarity. She always replied " but I don't drink that much " . I

would just sigh. She was in deep denial, and so was I. Love, Bobby 

http://sweetlorrane.blogspot.com/

 

To: livercirrhosissupport

Sent: Tuesday, January 24, 2012 9:42 PM

Subject: Confused and frustrated newbie

 

Hello everyone.

I have been a silent member for a few months, too overwhelmed and emotional to

write. I feel I can write some of my story now and see what you all think.

When I turned 60 last Jan. I decided that I needed a health base line and went

to Mayo Clinic in Arizona twice for about 4 months total. They ran over 100

tests on me.

The reason I went to Mayo is we live in Arkansas and the doctors come here when

they can't get a job anywhere else and don't want to be watched closely. They

are not up on the latest of anything and about 20-30 yrs behind California.in

knowledge and skill.

One example is my 3 yr old Grandaughter was taken to the doctor for the

possibility of flu....Dr. said she had a sinus infection and sent her home with

antibiotics. Within 12 hours she was dead. Turns out she had a heart

infection! Nothing was done about the Doctor not running any tests on her.

Mayo discovered I have stage 4 severe liver fibrosis/cirrosis....I had NO IDEA I

had anything wrong with my liver. My local doctor I'd seen for 15 yrs and

thought was good.

Mayo Clinic was very confusing, and they were confused too. Seems I have lots

of bad liver results, but then other tests aren't so bad and they didn't offer

me any advice because they didn't know what was going on. I was so

shocked...they refused to tell me it was stage 4, refused to tell me how long I

might have left, said there no treatment, I couldn't have a transplant, and I

was too severe to have even a biopsy and they wouldn't do anything but say I had

NASH. (I'm LDS and didn't drink etc). They gave me no info, 2 recommendations

only after I asked and both of them no longer work in Oklahoma. I didn't know

what to do.

I came back with a 3 inch binder of test results, reports, xrays,

scans...everything the hospital had, I had a copy of it. I took it

to my Doctor of 15 yrs he did not look at a SINGLE PAGE and started YELLING at

me in disgust, telling me that there was nothing wrong with my liver and I'd

wasted my time etc. He ran his own tests that would show that I had some

problems, but he said my liver was fine!! I'd never been treated so horrible by

a doctor. These 'hick town' doctors still think they are God and make no

mistakes. He yelled at me that he would order that biopsy as there was nothing

wrong. I can't believe a Doctor from Arkansas thought he was above a place like

Mayo!

Need I say I fired him? I also found out that there are no liver doctors

around here, no support groups and no grief counselors. I am totally on my own.

I spent hours and hours online looking up each test and what it meant. I didn't

even get my MELD score or know anything from it from Mayo Clinic!!!

I didn't know what to do, who to turn to, I was on my own. I finally after 2

months got to see a Doctor in Oklahoma and I took my big binder, my research and

told her I wanted a BLUNT opinion of where I was at with my liver. She knew

exactly how

it happened (untreated fatty liver diagnosed 10 yrs ago!) , I had a meld score

of 7-8, and was stage 4 . All this I already knew...and found out before she

cofirmed it. She said a biopsy wasn't necessary as I was too far along for any

kind of treatment etc. She even said I could eat what I wanted because I was

too far along and knowing wouldn't make a difference.

Then I see my new liver Doctor and she said that my kind of disease isn't

evident like HepC etc...I won't turn yellow and tests results will be confusing.

She was going to write them letters to inform them I' that I'm indeed much worse

than I look....and how the tests will give wierd answers.

Did anyone else on this list get conflicting info and opinions from every doctor

they saw?

Did anyone have their friends and family say " Oh, so and so had that and lived

20 yrs " ....they don't understand I've had a problem for over 12 yrs! I'm not

just starting...I'm already at the end.

What test results would you like to see on this board so you can help me make

sense of all this confusion?

So I have no support except this group. I don't know anything of what to expect

from this illness...what symptoms are.

I'm loosing weight and my liver octor didn't realize I didn't know it was a

symptom. I'm sleepy a lot....found out that is a symptom. I also have times I

stay up 30+ hours and then sleep for 24....anyone else do that?

The way I see it is Arkansas doctors killed my Grandaughter and by their neglect

have killed me....and they will go along in their God place and not think twice

about it.

Sorry for rambling...it is I'm bouncing off the walls because I don't know what

to expect.

Thanks

Carole

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Posted
Posted

Bobby, that was the second thing they did ,first was scope down my throat also

had a colonoscopyI had a liver byopsy..they put my out and went thru my jugular

vein...to take itI am glad they did that ..but no one said what stage I am

at...I will have to ask I guess

Annie

> To: livercirrhosissupport

> From: robwalkingeagle@...

> Date: Thu, 26 Jan 2012 00:22:36 -0800

> Subject: Re: Confused and frustrated newbie

>

> Dear Carole... My name is Bobby. I am one of the moderators of this group. I

was diagnosed after watching my best friend die from alcoholic induced liver

cirrhosis. It was a gut wrenching experience needless to say.

>

> I quit drinking, and went looking for the reason for the severe pain I was

having in my upper left quadrant. Doctors kept on saying that they were sure

that I was just imagining things because of my recently lost loved one. I had

learned several medical terms in taking care of her, and they thought I was

projecting liver disease upon myself out of grief.

>

> My doctor was so doubtful of me having liver disease that she very tersely

stated that " I will go kicking and screaming along with you having a liver

biopsy! " She was sure that my problem was my gallbladder, and so had me

convince a surgeon to take it out. I asked him to have a looksee when he was in

there at my liver and to biopsy it if he saw anything that looked like

cirrhosis. I woke up from the surgery with him patting me on the shoulder being

told " Im sorry, you do have cirrhosis. I asked him, totally in tears " which part

has cirrhosis? " and he said " all of it " .

>

> Upon me telling my family, I was hit with the " so and so lived with this for

years and years " .

>

> My wife called up my primary care doctor to ask for a liver transplant

evaluation referral. She said there was silence on the other end for a long

while, because the doctor was in shock.

>

> So I joined this group. Here are some things I found out from this group, and

my experience which I hope is helpful...

>

> I am alive today.

>

> I will be alive until I die.

> Life is good.

>

> The needle biopsy is the GOLD standard for the diagnosis of liver disease.

> The MELD score goes from 7 to 40 with 40 being the sickest.

>

> Unless a person has had a NEEDLE BIOPSY, then there is a chance that they

might not have cirrhosis.

>

> Even the country's foremost expert could make a misdiagnosis.

>

> The point is that if it were me, I would want the biopsy. I would fight for

it. I still might.

>

> The reason I say this is that the A-hole doctor who did mine used an electo

cautery tool and did a " wedge biopsy " .

>

> The hepatologist at CU was reluctant to trust it, because the capsule of the

liver is part of the sample, and contains a huge amount of fibrosis, since it is

made of fibrosis.

> If the day when I might need a transplant comes around and the transplant team

is in any doubt of my diagnosis, that wedge biopsy could hurt my chances.

>

> Carole, you have come to the right place. We all have what you have and will

be your friend, and share our stories with you. I am sorry for all the crap you

had to go through to get your answers. You are pretty smart to realize that

" they " couldn't be trusted. Doctors have to win my trust, one visit at a time. I

fired two doctors on the road to my diagnosis. in the mean time, I am going to

link my story again, even though I just did this. Here is the blog for my loved

one Ardis. She lighted the way for me. I always offered to quit drinking with

here in a show of solidarity. She always replied " but I don't drink that much " . I

would just sigh. She was in deep denial, and so was I. Love, Bobby

>

> http://sweetlorrane.blogspot.com/

>

>

>

>

> To: livercirrhosissupport

> Sent: Tuesday, January 24, 2012 9:42 PM

> Subject: Confused and frustrated newbie

>

>

>

> Hello everyone.

> I have been a silent member for a few months, too overwhelmed and emotional to

write. I feel I can write some of my story now and see what you all think.

> When I turned 60 last Jan. I decided that I needed a health base line and went

to Mayo Clinic in Arizona twice for about 4 months total. They ran over 100

tests on me.

> The reason I went to Mayo is we live in Arkansas and the doctors come here

when they can't get a job anywhere else and don't want to be watched closely.

They are not up on the latest of anything and about 20-30 yrs behind

California.in knowledge and skill.

> One example is my 3 yr old Grandaughter was taken to the doctor for the

possibility of flu....Dr. said she had a sinus infection and sent her home with

antibiotics. Within 12 hours she was dead. Turns out she had a heart

infection! Nothing was done about the Doctor not running any tests on her.

> Mayo discovered I have stage 4 severe liver fibrosis/cirrosis....I had NO IDEA

I had anything wrong with my liver. My local doctor I'd seen for 15 yrs and

thought was good.

> Mayo Clinic was very confusing, and they were confused too. Seems I have lots

of bad liver results, but then other tests aren't so bad and they didn't offer

me any advice because they didn't know what was going on. I was so

shocked...they refused to tell me it was stage 4, refused to tell me how long I

might have left, said there no treatment, I couldn't have a transplant, and I

was too severe to have even a biopsy and they wouldn't do anything but say I had

NASH. (I'm LDS and didn't drink etc). They gave me no info, 2 recommendations

only after I asked and both of them no longer work in Oklahoma. I didn't know

what to do.

> I came back with a 3 inch binder of test results, reports, xrays,

scans...everything the hospital had, I had a copy of it. I took it

> to my Doctor of 15 yrs he did not look at a SINGLE PAGE and started YELLING at

me in disgust, telling me that there was nothing wrong with my liver and I'd

wasted my time etc. He ran his own tests that would show that I had some

problems, but he said my liver was fine!! I'd never been treated so horrible by

a doctor. These 'hick town' doctors still think they are God and make no

mistakes. He yelled at me that he would order that biopsy as there was nothing

wrong. I can't believe a Doctor from Arkansas thought he was above a place like

Mayo!

> Need I say I fired him? I also found out that there are no liver doctors

around here, no support groups and no grief counselors. I am totally on my own.

> I spent hours and hours online looking up each test and what it meant. I

didn't even get my MELD score or know anything from it from Mayo Clinic!!!

> I didn't know what to do, who to turn to, I was on my own. I finally after 2

months got to see a Doctor in Oklahoma and I took my big binder, my research and

told her I wanted a BLUNT opinion of where I was at with my liver. She knew

exactly how

> it happened (untreated fatty liver diagnosed 10 yrs ago!) , I had a meld score

of 7-8, and was stage 4 . All this I already knew...and found out before she

cofirmed it. She said a biopsy wasn't necessary as I was too far along for any

kind of treatment etc. She even said I could eat what I wanted because I was

too far along and knowing wouldn't make a difference.

> Then I see my new liver Doctor and she said that my kind of disease isn't

evident like HepC etc...I won't turn yellow and tests results will be confusing.

She was going to write them letters to inform them I' that I'm indeed much worse

than I look....and how the tests will give wierd answers.

> Did anyone else on this list get conflicting info and opinions from every

doctor they saw?

> Did anyone have their friends and family say " Oh, so and so had that and lived

20 yrs " ....they don't understand I've had a problem for over 12 yrs! I'm not

just starting...I'm already at the end.

> What test results would you like to see on this board so you can help me make

sense of all this confusion?

> So I have no support except this group. I don't know anything of what to

expect from this illness...what symptoms are.

> I'm loosing weight and my liver octor didn't realize I didn't know it was a

symptom. I'm sleepy a lot....found out that is a symptom. I also have times I

stay up 30+ hours and then sleep for 24....anyone else do that?

> The way I see it is Arkansas doctors killed my Grandaughter and by their

neglect have killed me....and they will go along in their God place and not

think twice about it.

> Sorry for rambling...it is I'm bouncing off the walls because I don't know

what to expect.

> Thanks

> Carole

>

>

>

>

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Bobby

Might I say that by the time Ardis was terminal, she may not have been drinking

much.  Likely, the same with you.  I watched an ex, that was having alcoholic

seizures during his drinking and he actually didn't drink hardly any quantity. 

Two large glasses of cheap white wine could put him into a seizure and out cold

for 4 hours.

I was able to get sober during that relationship; because, I knew not to say " I

would never drink again, if that happened to me " .  Blackouts were already the

constant and I sure didn't want to wake up and have a seizure, because there was

no booze left.

Gloria

________________________________

 

Dear Carole... My name is Bobby. I am one of the moderators of this group. I was

diagnosed after watching my best friend die from alcoholic induced liver

cirrhosis. It was a gut wrenching experience needless to say.

I quit drinking, and went looking for the reason for the severe pain I was

having in my upper left quadrant. Doctors kept on saying that they were sure

that I was just imagining things because of my recently lost loved one. I had

learned several medical terms in taking care of her, and they thought I was

projecting liver disease upon myself out of grief. 

My doctor was so doubtful of me having liver disease that she very tersely

stated that " I will go kicking and screaming along with you having a liver

biopsy! " She was sure that  my problem was my gallbladder, and so had me

convince a surgeon to take it out. I asked him to have a looksee when he was in

there at my liver and to biopsy it if he saw anything that looked like

cirrhosis. I woke up from the surgery with him patting me on the shoulder being

told " Im sorry, you do have cirrhosis. I asked him, totally in tears " which part

has cirrhosis? " and he said " all of it " .

Upon me telling my family, I was hit with the " so and so lived with this for

years and years " . 

My wife called up my primary care doctor to ask for a liver transplant

evaluation referral. She said there was silence on the other end for a long

while, because the doctor was in shock.

So I joined this group. Here are some things I found out from this group, and my

experience which I hope is helpful...

I am alive today.

I will be alive until I die.

Life is good.

The needle biopsy is the GOLD standard for the diagnosis of liver disease.

The MELD score goes from 7 to 40 with 40 being the sickest.

Unless a person has had a NEEDLE BIOPSY, then there is a chance that they might

not have cirrhosis.

Even the country's foremost expert could make a misdiagnosis.

The point is that if it were me, I would want the biopsy. I would fight for it.

I still might.

The reason I say this is that the A-hole doctor who did mine used an electo

cautery tool and did a " wedge biopsy " . 

The hepatologist at CU was reluctant to trust it, because the capsule of the

liver is part of the sample, and contains a huge amount of fibrosis, since it is

made of fibrosis.

If the day when I might need a transplant comes around and the transplant team

is in any doubt of my diagnosis, that wedge biopsy could hurt my chances.

Carole, you have come to the right place. We all have what you have and will be

your friend, and share our stories with you. I am sorry for all the crap you had

to go through to get your answers. You are pretty smart to realize that " they "

couldn't be trusted. Doctors have to win my trust, one visit at a time. I fired

two  doctors on the road to my diagnosis. in the mean time, I am going to link

my story again, even though I just did this.  Here is the blog for my loved one

Ardis. She lighted the way for me. I always offered to quit drinking with here

in a show of solidarity. She always replied " but I don't drink that much " . I

would just sigh. She was in deep denial, and so was I. Love, Bobby 

http://sweetlorrane.blogspot.com/

 

To: livercirrhosissupport

Sent: Tuesday, January 24, 2012 9:42 PM

Subject: Confused and frustrated newbie

 

Hello everyone.

I have been a silent member for a few months, too overwhelmed and emotional to

write. I feel I can write some of my story now and see what you all think.

When I turned 60 last Jan. I decided that I needed a health base line and went

to Mayo Clinic in Arizona twice for about 4 months total. They ran over 100

tests on me.

The reason I went to Mayo is we live in Arkansas and the doctors come here when

they can't get a job anywhere else and don't want to be watched closely. They

are not up on the latest of anything and about 20-30 yrs behind California.in

knowledge and skill.

One example is my 3 yr old Grandaughter was taken to the doctor for the

possibility of flu....Dr. said she had a sinus infection and sent her home with

antibiotics. Within 12 hours she was dead. Turns out she had a heart

infection! Nothing was done about the Doctor not running any tests on her.

Mayo discovered I have stage 4 severe liver fibrosis/cirrosis....I had NO IDEA I

had anything wrong with my liver. My local doctor I'd seen for 15 yrs and

thought was good.

Mayo Clinic was very confusing, and they were confused too. Seems I have lots

of bad liver results, but then other tests aren't so bad and they didn't offer

me any advice because they didn't know what was going on. I was so

shocked...they refused to tell me it was stage 4, refused to tell me how long I

might have left, said there no treatment, I couldn't have a transplant, and I

was too severe to have even a biopsy and they wouldn't do anything but say I had

NASH. (I'm LDS and didn't drink etc). They gave me no info, 2 recommendations

only after I asked and both of them no longer work in Oklahoma. I didn't know

what to do.

I came back with a 3 inch binder of test results, reports, xrays,

scans...everything the hospital had, I had a copy of it. I took it

to my Doctor of 15 yrs he did not look at a SINGLE PAGE and started YELLING at

me in disgust, telling me that there was nothing wrong with my liver and I'd

wasted my time etc. He ran his own tests that would show that I had some

problems, but he said my liver was fine!! I'd never been treated so horrible by

a doctor. These 'hick town' doctors still think they are God and make no

mistakes. He yelled at me that he would order that biopsy as there was nothing

wrong. I can't believe a Doctor from Arkansas thought he was above a place like

Mayo!

Need I say I fired him? I also found out that there are no liver doctors

around here, no support groups and no grief counselors. I am totally on my own.

I spent hours and hours online looking up each test and what it meant. I didn't

even get my MELD score or know anything from it from Mayo Clinic!!!

I didn't know what to do, who to turn to, I was on my own. I finally after 2

months got to see a Doctor in Oklahoma and I took my big binder, my research and

told her I wanted a BLUNT opinion of where I was at with my liver. She knew

exactly how

it happened (untreated fatty liver diagnosed 10 yrs ago!) , I had a meld score

of 7-8, and was stage 4 . All this I already knew...and found out before she

cofirmed it. She said a biopsy wasn't necessary as I was too far along for any

kind of treatment etc. She even said I could eat what I wanted because I was

too far along and knowing wouldn't make a difference.

Then I see my new liver Doctor and she said that my kind of disease isn't

evident like HepC etc...I won't turn yellow and tests results will be confusing.

She was going to write them letters to inform them I' that I'm indeed much worse

than I look....and how the tests will give wierd answers.

Did anyone else on this list get conflicting info and opinions from every doctor

they saw?

Did anyone have their friends and family say " Oh, so and so had that and lived

20 yrs " ....they don't understand I've had a problem for over 12 yrs! I'm not

just starting...I'm already at the end.

What test results would you like to see on this board so you can help me make

sense of all this confusion?

So I have no support except this group. I don't know anything of what to expect

from this illness...what symptoms are.

I'm loosing weight and my liver octor didn't realize I didn't know it was a

symptom. I'm sleepy a lot....found out that is a symptom. I also have times I

stay up 30+ hours and then sleep for 24....anyone else do that?

The way I see it is Arkansas doctors killed my Grandaughter and by their neglect

have killed me....and they will go along in their God place and not think twice

about it.

Sorry for rambling...it is I'm bouncing off the walls because I don't know what

to expect.

Thanks

Carole

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Posted
Posted

Dear Annie,

you can just do what I did. I got tired of the doctors knowing every

thing about my case, and me having to ask, but forgetting to ask certain

questions. So, I found out where the records department is. In my case,

right in the basement of the hospital. They all know me on sight down

there now. You might be shocked to see what the doctors actually write

in your clinic notes! Any way, my biopsy report was done by a

pathologist. He noted that I had piecemeal necrosis, and bridging

fibrosis, stage 4. That is a fancy way of saying pieces of dead liver

surrounded by a bunch of scar tissue. The pathology report was really

not too hard to read, and my shell shocked primary care doctor was too

glad to explain it to me, and confirm what the internet already said.

Let us know what happens. Love, Bobby

>

>

> Bobby, that was the second thing they did ,first was scope down my

throat also had a colonoscopyI had a liver byopsy..they put my out and

went thru my jugular vein...to take itI am glad they did that ..but no

one said what stage I am at...I will have to ask I guess

>

> Annie

> > To: livercirrhosissupport

> > From: robwalkingeagle@...

> > Date: Thu, 26 Jan 2012 00:22:36 -0800

> > Subject: Re: Confused and frustrated

newbie

> >

> > Dear Carole... My name is Bobby. I am one of the moderators of this

group. I was diagnosed after watching my best friend die from alcoholic

induced liver cirrhosis. It was a gut wrenching experience needless to

say.

> >

> > I quit drinking, and went looking for the reason for the severe pain

I was having in my upper left quadrant. Doctors kept on saying that they

were sure that I was just imagining things because of my recently lost

loved one. I had learned several medical terms in taking care of her,

and they thought I was projecting liver disease upon myself out of

grief.

> >

> > My doctor was so doubtful of me having liver disease that she very

tersely stated that " I will go kicking and screaming along with you

having a liver biopsy! " She was sure that my problem was my

gallbladder, and so had me convince a surgeon to take it out. I asked

him to have a looksee when he was in there at my liver and to biopsy it

if he saw anything that looked like cirrhosis. I woke up from the

surgery with him patting me on the shoulder being told " Im sorry, you do

have cirrhosis. I asked him, totally in tears " which part has

cirrhosis? " and he said " all of it " .

> >

> > Upon me telling my family, I was hit with the " so and so lived with

this for years and years " .

> >

> > My wife called up my primary care doctor to ask for a liver

transplant evaluation referral. She said there was silence on the other

end for a long while, because the doctor was in shock.

> >

> > So I joined this group. Here are some things I found out from this

group, and my experience which I hope is helpful...

> >

> > I am alive today.

> >

> > I will be alive until I die.

> > Life is good.

> >

> > The needle biopsy is the GOLD standard for the diagnosis of liver

disease.

> > The MELD score goes from 7 to 40 with 40 being the sickest.

> >

> > Unless a person has had a NEEDLE BIOPSY, then there is a chance that

they might not have cirrhosis.

> >

> > Even the country's foremost expert could make a misdiagnosis.

> >

> > The point is that if it were me, I would want the biopsy. I would

fight for it. I still might.

> >

> > The reason I say this is that the A-hole doctor who did mine used an

electo cautery tool and did a " wedge biopsy " .

> >

> > The hepatologist at CU was reluctant to trust it, because the

capsule of the liver is part of the sample, and contains a huge amount

of fibrosis, since it is made of fibrosis.

> > If the day when I might need a transplant comes around and the

transplant team is in any doubt of my diagnosis, that wedge biopsy could

hurt my chances.

> >

> > Carole, you have come to the right place. We all have what you have

and will be your friend, and share our stories with you. I am sorry for

all the crap you had to go through to get your answers. You are pretty

smart to realize that " they " couldn't be trusted. Doctors have to win my

trust, one visit at a time. I fired two doctors on the road to my

diagnosis. in the mean time, I am going to link my story again, even

though I just did this. Here is the blog for my loved one Ardis. She

lighted the way for me. I always offered to quit drinking with here in a

show of solidarity. She always replied " but I don't drink that much " . I

would just sigh. She was in deep denial, and so was I. Love, Bobby

> >

> > http://sweetlorrane.blogspot.com/

> >

> >

> > From: Carolear Carole_ar@...

> >

> > To: livercirrhosissupport

> > Sent: Tuesday, January 24, 2012 9:42 PM

> > Subject: Confused and frustrated newbie

> >

> >

> >

> > Hello everyone.

> > I have been a silent member for a few months, too overwhelmed and

emotional to write. I feel I can write some of my story now and see

what you all think.

> > When I turned 60 last Jan. I decided that I needed a health base

line and went to Mayo Clinic in Arizona twice for about 4 months total.

They ran over 100 tests on me.

> > The reason I went to Mayo is we live in Arkansas and the doctors

come here when they can't get a job anywhere else and don't want to be

watched closely. They are not up on the latest of anything and about

20-30 yrs behind California.in knowledge and skill.

> > One example is my 3 yr old Grandaughter was taken to the doctor for

the possibility of flu....Dr. said she had a sinus infection and sent

her home with antibiotics. Within 12 hours she was dead. Turns out she

had a heart infection! Nothing was done about the Doctor not running

any tests on her.

> > Mayo discovered I have stage 4 severe liver fibrosis/cirrosis....I

had NO IDEA I had anything wrong with my liver. My local doctor I'd

seen for 15 yrs and thought was good.

> > Mayo Clinic was very confusing, and they were confused too. Seems I

have lots of bad liver results, but then other tests aren't so bad and

they didn't offer me any advice because they didn't know what was going

on. I was so shocked...they refused to tell me it was stage 4, refused

to tell me how long I might have left, said there no treatment, I

couldn't have a transplant, and I was too severe to have even a biopsy

and they wouldn't do anything but say I had NASH. (I'm LDS and didn't

drink etc). They gave me no info, 2 recommendations only after I asked

and both of them no longer work in Oklahoma. I didn't know what to do.

> > I came back with a 3 inch binder of test results, reports, xrays,

scans...everything the hospital had, I had a copy of it. I took it

> > to my Doctor of 15 yrs he did not look at a SINGLE PAGE and started

YELLING at me in disgust, telling me that there was nothing wrong with

my liver and I'd wasted my time etc. He ran his own tests that would

show that I had some problems, but he said my liver was fine!! I'd

never been treated so horrible by a doctor. These 'hick town' doctors

still think they are God and make no mistakes. He yelled at me that he

would order that biopsy as there was nothing wrong. I can't believe a

Doctor from Arkansas thought he was above a place like Mayo!

> > Need I say I fired him? I also found out that there are no liver

doctors around here, no support groups and no grief counselors. I am

totally on my own.

> > I spent hours and hours online looking up each test and what it

meant. I didn't even get my MELD score or know anything from it from

Mayo Clinic!!!

> > I didn't know what to do, who to turn to, I was on my own. I

finally after 2 months got to see a Doctor in Oklahoma and I took my big

binder, my research and told her I wanted a BLUNT opinion of where I was

at with my liver. She knew exactly how

> > it happened (untreated fatty liver diagnosed 10 yrs ago!) , I had a

meld score of 7-8, and was stage 4 . All this I already knew...and

found out before she cofirmed it. She said a biopsy wasn't necessary as

I was too far along for any kind of treatment etc. She even said I

could eat what I wanted because I was too far along and knowing wouldn't

make a difference.

> > Then I see my new liver Doctor and she said that my kind of disease

isn't evident like HepC etc...I won't turn yellow and tests results will

be confusing. She was going to write them letters to inform them I'

that I'm indeed much worse than I look....and how the tests will give

wierd answers.

> > Did anyone else on this list get conflicting info and opinions from

every doctor they saw?

> > Did anyone have their friends and family say " Oh, so and so had that

and lived 20 yrs " ....they don't understand I've had a problem for over

12 yrs! I'm not just starting...I'm already at the end.

> > What test results would you like to see on this board so you can

help me make sense of all this confusion?

> > So I have no support except this group. I don't know anything of

what to expect from this illness...what symptoms are.

> > I'm loosing weight and my liver octor didn't realize I didn't know

it was a symptom. I'm sleepy a lot....found out that is a symptom. I

also have times I stay up 30+ hours and then sleep for 24....anyone else

do that?

> > The way I see it is Arkansas doctors killed my Grandaughter and by

their neglect have killed me....and they will go along in their God

place and not think twice about it.

> > Sorry for rambling...it is I'm bouncing off the walls because I

don't know what to expect.

> > Thanks

> > Carole

> >

> >

> >

> >

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Posted
Posted

Hi Bobby:  Jackie E. here.  I've been lurking and reading this conversation

and thinking about you all on this group.  and I did what you did.  We

went to the medical records dept.  We signed numerous release forms so that

each one of his drs would have access to what all the other ones were treating

him for.  He sees a heart dr and an endocrinologist in addition to his primary

care dr.  I wrote letters to each of these drs which contained the contact info

for each one of the drs.  This way everyone was " on the same page " and there

would be no confusion as to treatment or meds.  The transplant team were very

pleased with this.  As a matter of fact, at their last conference (where

was on the panel of transplant receipients)  they called me to come forward and

receive an " advocate of the year " award.  It was very nice.  I sure wish I

could be there in person to advocate for each one on this group who needs

someone.  If anyone wants

to get in touch with me on my personal email, it's jckellermann@...   I

explained alot about caregiving and advocating in my book.  If anyone on this

group would like to buy a copy of the book I understand it is now available

online.  You can google amazon.com  go to bookstore and type in " the mustard

seed by jackie ellermann "   and it will come up.  It's $16.95 and it's

dedicated to our family at this group.  I'm hoping that caregivers here will

find it helpful and patients will be inspired by 's experience.  As always,

you are all in my prayers.  Love to all,  Jackie E.

________________________________

To: livercirrhosissupport

Sent: Friday, January 27, 2012 5:21 AM

Subject: Re: Confused and frustrated newbie

 

Dear Annie,

you can just do what I did. I got tired of the doctors knowing every

thing about my case, and me having to ask, but forgetting to ask certain

questions. So, I found out where the records department is. In my case,

right in the basement of the hospital. They all know me on sight down

there now. You might be shocked to see what the doctors actually write

in your clinic notes! Any way, my biopsy report was done by a

pathologist. He noted that I had piecemeal necrosis, and bridging

fibrosis, stage 4. That is a fancy way of saying pieces of dead liver

surrounded by a bunch of scar tissue. The pathology report was really

not too hard to read, and my shell shocked primary care doctor was too

glad to explain it to me, and confirm what the internet already said.

Let us know what happens. Love, Bobby

>

>

> Bobby, that was the second thing they did ,first was scope down my

throat also had a colonoscopyI had a liver byopsy..they put my out and

went thru my jugular vein...to take itI am glad they did that ..but no

one said what stage I am at...I will have to ask I guess

>

> Annie

> > To: livercirrhosissupport

> > From: robwalkingeagle@...

> > Date: Thu, 26 Jan 2012 00:22:36 -0800

> > Subject: Re: Confused and frustrated

newbie

> >

> > Dear Carole... My name is Bobby. I am one of the moderators of this

group. I was diagnosed after watching my best friend die from alcoholic

induced liver cirrhosis. It was a gut wrenching experience needless to

say.

> >

> > I quit drinking, and went looking for the reason for the severe pain

I was having in my upper left quadrant. Doctors kept on saying that they

were sure that I was just imagining things because of my recently lost

loved one. I had learned several medical terms in taking care of her,

and they thought I was projecting liver disease upon myself out of

grief.

> >

> > My doctor was so doubtful of me having liver disease that she very

tersely stated that " I will go kicking and screaming along with you

having a liver biopsy! " She was sure that my problem was my

gallbladder, and so had me convince a surgeon to take it out. I asked

him to have a looksee when he was in there at my liver and to biopsy it

if he saw anything that looked like cirrhosis. I woke up from the

surgery with him patting me on the shoulder being told " Im sorry, you do

have cirrhosis. I asked him, totally in tears " which part has

cirrhosis? " and he said " all of it " .

> >

> > Upon me telling my family, I was hit with the " so and so lived with

this for years and years " .

> >

> > My wife called up my primary care doctor to ask for a liver

transplant evaluation referral. She said there was silence on the other

end for a long while, because the doctor was in shock.

> >

> > So I joined this group. Here are some things I found out from this

group, and my experience which I hope is helpful...

> >

> > I am alive today.

> >

> > I will be alive until I die.

> > Life is good.

> >

> > The needle biopsy is the GOLD standard for the diagnosis of liver

disease.

> > The MELD score goes from 7 to 40 with 40 being the sickest.

> >

> > Unless a person has had a NEEDLE BIOPSY, then there is a chance that

they might not have cirrhosis.

> >

> > Even the country's foremost expert could make a misdiagnosis.

> >

> > The point is that if it were me, I would want the biopsy. I would

fight for it. I still might.

> >

> > The reason I say this is that the A-hole doctor who did mine used an

electo cautery tool and did a " wedge biopsy " .

> >

> > The hepatologist at CU was reluctant to trust it, because the

capsule of the liver is part of the sample, and contains a huge amount

of fibrosis, since it is made of fibrosis.

> > If the day when I might need a transplant comes around and the

transplant team is in any doubt of my diagnosis, that wedge biopsy could

hurt my chances.

> >

> > Carole, you have come to the right place. We all have what you have

and will be your friend, and share our stories with you. I am sorry for

all the crap you had to go through to get your answers. You are pretty

smart to realize that " they " couldn't be trusted. Doctors have to win my

trust, one visit at a time. I fired two doctors on the road to my

diagnosis. in the mean time, I am going to link my story again, even

though I just did this. Here is the blog for my loved one Ardis. She

lighted the way for me. I always offered to quit drinking with here in a

show of solidarity. She always replied " but I don't drink that much " . I

would just sigh. She was in deep denial, and so was I. Love, Bobby

> >

> > http://sweetlorrane.blogspot.com/

> >

> >

> > From: Carolear Carole_ar@...

> >

> > To: livercirrhosissupport

> > Sent: Tuesday, January 24, 2012 9:42 PM

> > Subject: Confused and frustrated newbie

> >

> >

> >

> > Hello everyone.

> > I have been a silent member for a few months, too overwhelmed and

emotional to write. I feel I can write some of my story now and see

what you all think.

> > When I turned 60 last Jan. I decided that I needed a health base

line and went to Mayo Clinic in Arizona twice for about 4 months total.

They ran over 100 tests on me.

> > The reason I went to Mayo is we live in Arkansas and the doctors

come here when they can't get a job anywhere else and don't want to be

watched closely. They are not up on the latest of anything and about

20-30 yrs behind California.in knowledge and skill.

> > One example is my 3 yr old Grandaughter was taken to the doctor for

the possibility of flu....Dr. said she had a sinus infection and sent

her home with antibiotics. Within 12 hours she was dead. Turns out she

had a heart infection! Nothing was done about the Doctor not running

any tests on her.

> > Mayo discovered I have stage 4 severe liver fibrosis/cirrosis....I

had NO IDEA I had anything wrong with my liver. My local doctor I'd

seen for 15 yrs and thought was good.

> > Mayo Clinic was very confusing, and they were confused too. Seems I

have lots of bad liver results, but then other tests aren't so bad and

they didn't offer me any advice because they didn't know what was going

on. I was so shocked...they refused to tell me it was stage 4, refused

to tell me how long I might have left, said there no treatment, I

couldn't have a transplant, and I was too severe to have even a biopsy

and they wouldn't do anything but say I had NASH. (I'm LDS and didn't

drink etc). They gave me no info, 2 recommendations only after I asked

and both of them no longer work in Oklahoma. I didn't know what to do.

> > I came back with a 3 inch binder of test results, reports, xrays,

scans...everything the hospital had, I had a copy of it. I took it

> > to my Doctor of 15 yrs he did not look at a SINGLE PAGE and started

YELLING at me in disgust, telling me that there was nothing wrong with

my liver and I'd wasted my time etc. He ran his own tests that would

show that I had some problems, but he said my liver was fine!! I'd

never been treated so horrible by a doctor. These 'hick town' doctors

still think they are God and make no mistakes. He yelled at me that he

would order that biopsy as there was nothing wrong. I can't believe a

Doctor from Arkansas thought he was above a place like Mayo!

> > Need I say I fired him? I also found out that there are no liver

doctors around here, no support groups and no grief counselors. I am

totally on my own.

> > I spent hours and hours online looking up each test and what it

meant. I didn't even get my MELD score or know anything from it from

Mayo Clinic!!!

> > I didn't know what to do, who to turn to, I was on my own. I

finally after 2 months got to see a Doctor in Oklahoma and I took my big

binder, my research and told her I wanted a BLUNT opinion of where I was

at with my liver. She knew exactly how

> > it happened (untreated fatty liver diagnosed 10 yrs ago!) , I had a

meld score of 7-8, and was stage 4 . All this I already knew...and

found out before she cofirmed it. She said a biopsy wasn't necessary as

I was too far along for any kind of treatment etc. She even said I

could eat what I wanted because I was too far along and knowing wouldn't

make a difference.

> > Then I see my new liver Doctor and she said that my kind of disease

isn't evident like HepC etc...I won't turn yellow and tests results will

be confusing. She was going to write them letters to inform them I'

that I'm indeed much worse than I look....and how the tests will give

wierd answers.

> > Did anyone else on this list get conflicting info and opinions from

every doctor they saw?

> > Did anyone have their friends and family say " Oh, so and so had that

and lived 20 yrs " ....they don't understand I've had a problem for over

12 yrs! I'm not just starting...I'm already at the end.

> > What test results would you like to see on this board so you can

help me make sense of all this confusion?

> > So I have no support except this group. I don't know anything of

what to expect from this illness...what symptoms are.

> > I'm loosing weight and my liver octor didn't realize I didn't know

it was a symptom. I'm sleepy a lot....found out that is a symptom. I

also have times I stay up 30+ hours and then sleep for 24....anyone else

do that?

> > The way I see it is Arkansas doctors killed my Grandaughter and by

their neglect have killed me....and they will go along in their God

place and not think twice about it.

> > Sorry for rambling...it is I'm bouncing off the walls because I

don't know what to expect.

> > Thanks

> > Carole

> >

> >

> >

> >

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Posted
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Gloria, you are correct!

Ardis really didn't drink much near the end, first because she didn't have any

money, and then, after she wasn't able to walk on her own, she was dependent on

me to get it for her.

For a while toward the end of her stay in the camper, and later when she got her

own apartment , I bought her schnapps and gluten free beer with her retirement

money, and explained that since she was kind of in a hospice status without the

official paperwork, drinking wasn't going to cause any harm at that point. I

would hide that schnapps in nooks and crannies in her kitchen, and she would

call in the middle of the night and try in her most sweet voice to ask me if

there were any hidden. The guy at the liquor store would get really annoyed when

I went in and bought all of his half pints of peppermint schnapps. She was

drinking about half of a half pint of schnapps and one bottle of beer a day.

Then, after I took her to the Gastro doctor from South Africa, The lightbulb

went on in my head. She had never even been told that she needed a transplant,

and the doctors treating her just assumed that she wouldn't be qualified.  The

Gastro told us that she should go for a transplant, that she was young and did

not have co morbidities which would prevent her from getting one. When I

realized how severely the doctors at DHMC had dropped her through the cracks, I

demanded a  transplant evaluation.

I felt some pretty deep guilt for being her enabler one minute and trying to get

her a transplant the next. This was all way way against her wishes as well.

Ardis was given an appointment for a transplant eval, and released from the

hospital to a skilled nursing facility instead of her apartment. I did not sneak

her any beer while she was in there and she howled. When she saw the

hepatologist (who is now my own hepatologist) she had 30 days sober, and so was

I! On the second day of the transplant evaluation, the social worker, my wife

Sharon, Ardis and me all agreed to drop the request for a liver transplant, and

the social worker officially disqualified her. The main reason was that a

feeding tube would need to be placed that very afternoon, as her nutritional

status was so poor. None of us could bear any more tubes, needles or hoses,

especially the one being poked, Ardis. As soon as she was back to the nursing

facility, I inquired about rules regarding alcohol, and took Ardis to dinner,

and drank a beer with her. Three days later in the hospice, we drank a beer

together for the last time. 

So the main point is that with both of us, the damage had long been done. I

recognize symptoms I had  from several years back which were from ESLD. Ardis

too. 

Love, Bobby

 

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Thursday, January 26, 2012 7:26 PM

Subject: Re: Confused and frustrated newbie

 

Bobby

Might I say that by the time Ardis was terminal, she may not have been drinking

much.  Likely, the same with you.  I watched an ex, that was having alcoholic

seizures during his drinking and he actually didn't drink hardly any quantity. 

Two large glasses of cheap white wine could put him into a seizure and out cold

for 4 hours.

I was able to get sober during that relationship; because, I knew not to say " I

would never drink again, if that happened to me " .  Blackouts were already the

constant and I sure didn't want to wake up and have a seizure, because there was

no booze left.

Gloria

________________________________

 

Dear Carole... My name is Bobby. I am one of the moderators of this group. I was

diagnosed after watching my best friend die from alcoholic induced liver

cirrhosis. It was a gut wrenching experience needless to say.

I quit drinking, and went looking for the reason for the severe pain I was

having in my upper left quadrant. Doctors kept on saying that they were sure

that I was just imagining things because of my recently lost loved one. I had

learned several medical terms in taking care of her, and they thought I was

projecting liver disease upon myself out of grief. 

My doctor was so doubtful of me having liver disease that she very tersely

stated that " I will go kicking and screaming along with you having a liver

biopsy! " She was sure that  my problem was my gallbladder, and so had me

convince a surgeon to take it out. I asked him to have a looksee when he was in

there at my liver and to biopsy it if he saw anything that looked like

cirrhosis. I woke up from the surgery with him patting me on the shoulder being

told " Im sorry, you do have cirrhosis. I asked him, totally in tears " which part

has cirrhosis? " and he said " all of it " .

Upon me telling my family, I was hit with the " so and so lived with this for

years and years " . 

My wife called up my primary care doctor to ask for a liver transplant

evaluation referral. She said there was silence on the other end for a long

while, because the doctor was in shock.

So I joined this group. Here are some things I found out from this group, and my

experience which I hope is helpful...

I am alive today.

I will be alive until I die.

Life is good.

The needle biopsy is the GOLD standard for the diagnosis of liver disease.

The MELD score goes from 7 to 40 with 40 being the sickest.

Unless a person has had a NEEDLE BIOPSY, then there is a chance that they might

not have cirrhosis.

Even the country's foremost expert could make a misdiagnosis.

The point is that if it were me, I would want the biopsy. I would fight for it.

I still might.

The reason I say this is that the A-hole doctor who did mine used an electo

cautery tool and did a " wedge biopsy " . 

The hepatologist at CU was reluctant to trust it, because the capsule of the

liver is part of the sample, and contains a huge amount of fibrosis, since it is

made of fibrosis.

If the day when I might need a transplant comes around and the transplant team

is in any doubt of my diagnosis, that wedge biopsy could hurt my chances.

Carole, you have come to the right place. We all have what you have and will be

your friend, and share our stories with you. I am sorry for all the crap you had

to go through to get your answers. You are pretty smart to realize that " they "

couldn't be trusted. Doctors have to win my trust, one visit at a time. I fired

two  doctors on the road to my diagnosis. in the mean time, I am going to link

my story again, even though I just did this.  Here is the blog for my loved one

Ardis. She lighted the way for me. I always offered to quit drinking with here

in a show of solidarity. She always replied " but I don't drink that much " . I

would just sigh. She was in deep denial, and so was I. Love, Bobby 

http://sweetlorrane.blogspot.com/

 

To: livercirrhosissupport

Sent: Tuesday, January 24, 2012 9:42 PM

Subject: Confused and frustrated newbie

 

Hello everyone.

I have been a silent member for a few months, too overwhelmed and emotional to

write. I feel I can write some of my story now and see what you all think.

When I turned 60 last Jan. I decided that I needed a health base line and went

to Mayo Clinic in Arizona twice for about 4 months total. They ran over 100

tests on me.

The reason I went to Mayo is we live in Arkansas and the doctors come here when

they can't get a job anywhere else and don't want to be watched closely. They

are not up on the latest of anything and about 20-30 yrs behind California.in

knowledge and skill.

One example is my 3 yr old Grandaughter was taken to the doctor for the

possibility of flu....Dr. said she had a sinus infection and sent her home with

antibiotics. Within 12 hours she was dead. Turns out she had a heart

infection! Nothing was done about the Doctor not running any tests on her.

Mayo discovered I have stage 4 severe liver fibrosis/cirrosis....I had NO IDEA I

had anything wrong with my liver. My local doctor I'd seen for 15 yrs and

thought was good.

Mayo Clinic was very confusing, and they were confused too. Seems I have lots

of bad liver results, but then other tests aren't so bad and they didn't offer

me any advice because they didn't know what was going on. I was so

shocked...they refused to tell me it was stage 4, refused to tell me how long I

might have left, said there no treatment, I couldn't have a transplant, and I

was too severe to have even a biopsy and they wouldn't do anything but say I had

NASH. (I'm LDS and didn't drink etc). They gave me no info, 2 recommendations

only after I asked and both of them no longer work in Oklahoma. I didn't know

what to do.

I came back with a 3 inch binder of test results, reports, xrays,

scans...everything the hospital had, I had a copy of it. I took it

to my Doctor of 15 yrs he did not look at a SINGLE PAGE and started YELLING at

me in disgust, telling me that there was nothing wrong with my liver and I'd

wasted my time etc. He ran his own tests that would show that I had some

problems, but he said my liver was fine!! I'd never been treated so horrible by

a doctor. These 'hick town' doctors still think they are God and make no

mistakes. He yelled at me that he would order that biopsy as there was nothing

wrong. I can't believe a Doctor from Arkansas thought he was above a place like

Mayo!

Need I say I fired him? I also found out that there are no liver doctors

around here, no support groups and no grief counselors. I am totally on my own.

I spent hours and hours online looking up each test and what it meant. I didn't

even get my MELD score or know anything from it from Mayo Clinic!!!

I didn't know what to do, who to turn to, I was on my own. I finally after 2

months got to see a Doctor in Oklahoma and I took my big binder, my research and

told her I wanted a BLUNT opinion of where I was at with my liver. She knew

exactly how

it happened (untreated fatty liver diagnosed 10 yrs ago!) , I had a meld score

of 7-8, and was stage 4 . All this I already knew...and found out before she

cofirmed it. She said a biopsy wasn't necessary as I was too far along for any

kind of treatment etc. She even said I could eat what I wanted because I was

too far along and knowing wouldn't make a difference.

Then I see my new liver Doctor and she said that my kind of disease isn't

evident like HepC etc...I won't turn yellow and tests results will be confusing.

She was going to write them letters to inform them I' that I'm indeed much worse

than I look....and how the tests will give wierd answers.

Did anyone else on this list get conflicting info and opinions from every doctor

they saw?

Did anyone have their friends and family say " Oh, so and so had that and lived

20 yrs " ....they don't understand I've had a problem for over 12 yrs! I'm not

just starting...I'm already at the end.

What test results would you like to see on this board so you can help me make

sense of all this confusion?

So I have no support except this group. I don't know anything of what to expect

from this illness...what symptoms are.

I'm loosing weight and my liver octor didn't realize I didn't know it was a

symptom. I'm sleepy a lot....found out that is a symptom. I also have times I

stay up 30+ hours and then sleep for 24....anyone else do that?

The way I see it is Arkansas doctors killed my Grandaughter and by their neglect

have killed me....and they will go along in their God place and not think twice

about it.

Sorry for rambling...it is I'm bouncing off the walls because I don't know what

to expect.

Thanks

Carole

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Posted
Posted

Jackie, I want to buy a copy of your book, but want it autographed. How do I go

about doing that? Should I send it to you after I buy it? Love, Bobby

PS, thanks for the really good post. You deserve the ward for sure!!

 

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Friday, January 27, 2012 7:55 AM

Subject: Re: Confused and frustrated newbie

 

Hi Bobby:  Jackie E. here.  I've been lurking and reading this conversation

and thinking about you all on this group.  and I did what you did.  We

went to the medical records dept.  We signed numerous release forms so that

each one of his drs would have access to what all the other ones were treating

him for.  He sees a heart dr and an endocrinologist in addition to his primary

care dr.  I wrote letters to each of these drs which contained the contact info

for each one of the drs.  This way everyone was " on the same page " and there

would be no confusion as to treatment or meds.  The transplant team were very

pleased with this.  As a matter of fact, at their last conference (where

was on the panel of transplant receipients)  they called me to come forward and

receive an " advocate of the year " award.  It was very nice.  I sure wish I

could be there in person to advocate for each one on this group who needs

someone.  If anyone wants

to get in touch with me on my personal email, it's jckellermann@...   I

explained alot about caregiving and advocating in my book.  If anyone on this

group would like to buy a copy of the book I understand it is now available

online.  You can google amazon.com  go to bookstore and type in " the mustard

seed by jackie ellermann "   and it will come up.  It's $16.95 and it's

dedicated to our family at this group.  I'm hoping that caregivers here will

find it helpful and patients will be inspired by 's experience.  As always,

you are all in my prayers.  Love to all,  Jackie E.

________________________________

To: livercirrhosissupport

Sent: Friday, January 27, 2012 5:21 AM

Subject: Re: Confused and frustrated newbie

 

Dear Annie,

you can just do what I did. I got tired of the doctors knowing every

thing about my case, and me having to ask, but forgetting to ask certain

questions. So, I found out where the records department is. In my case,

right in the basement of the hospital. They all know me on sight down

there now. You might be shocked to see what the doctors actually write

in your clinic notes! Any way, my biopsy report was done by a

pathologist. He noted that I had piecemeal necrosis, and bridging

fibrosis, stage 4. That is a fancy way of saying pieces of dead liver

surrounded by a bunch of scar tissue. The pathology report was really

not too hard to read, and my shell shocked primary care doctor was too

glad to explain it to me, and confirm what the internet already said.

Let us know what happens. Love, Bobby

>

>

> Bobby, that was the second thing they did ,first was scope down my

throat also had a colonoscopyI had a liver byopsy..they put my out and

went thru my jugular vein...to take itI am glad they did that ..but no

one said what stage I am at...I will have to ask I guess

>

> Annie

> > To: livercirrhosissupport

> > From: robwalkingeagle@...

> > Date: Thu, 26 Jan 2012 00:22:36 -0800

> > Subject: Re: Confused and frustrated

newbie

> >

> > Dear Carole... My name is Bobby. I am one of the moderators of this

group. I was diagnosed after watching my best friend die from alcoholic

induced liver cirrhosis. It was a gut wrenching experience needless to

say.

> >

> > I quit drinking, and went looking for the reason for the severe pain

I was having in my upper left quadrant. Doctors kept on saying that they

were sure that I was just imagining things because of my recently lost

loved one. I had learned several medical terms in taking care of her,

and they thought I was projecting liver disease upon myself out of

grief.

> >

> > My doctor was so doubtful of me having liver disease that she very

tersely stated that " I will go kicking and screaming along with you

having a liver biopsy! " She was sure that my problem was my

gallbladder, and so had me convince a surgeon to take it out. I asked

him to have a looksee when he was in there at my liver and to biopsy it

if he saw anything that looked like cirrhosis. I woke up from the

surgery with him patting me on the shoulder being told " Im sorry, you do

have cirrhosis. I asked him, totally in tears " which part has

cirrhosis? " and he said " all of it " .

> >

> > Upon me telling my family, I was hit with the " so and so lived with

this for years and years " .

> >

> > My wife called up my primary care doctor to ask for a liver

transplant evaluation referral. She said there was silence on the other

end for a long while, because the doctor was in shock.

> >

> > So I joined this group. Here are some things I found out from this

group, and my experience which I hope is helpful...

> >

> > I am alive today.

> >

> > I will be alive until I die.

> > Life is good.

> >

> > The needle biopsy is the GOLD standard for the diagnosis of liver

disease.

> > The MELD score goes from 7 to 40 with 40 being the sickest.

> >

> > Unless a person has had a NEEDLE BIOPSY, then there is a chance that

they might not have cirrhosis.

> >

> > Even the country's foremost expert could make a misdiagnosis.

> >

> > The point is that if it were me, I would want the biopsy. I would

fight for it. I still might.

> >

> > The reason I say this is that the A-hole doctor who did mine used an

electo cautery tool and did a " wedge biopsy " .

> >

> > The hepatologist at CU was reluctant to trust it, because the

capsule of the liver is part of the sample, and contains a huge amount

of fibrosis, since it is made of fibrosis.

> > If the day when I might need a transplant comes around and the

transplant team is in any doubt of my diagnosis, that wedge biopsy could

hurt my chances.

> >

> > Carole, you have come to the right place. We all have what you have

and will be your friend, and share our stories with you. I am sorry for

all the crap you had to go through to get your answers. You are pretty

smart to realize that " they " couldn't be trusted. Doctors have to win my

trust, one visit at a time. I fired two doctors on the road to my

diagnosis. in the mean time, I am going to link my story again, even

though I just did this. Here is the blog for my loved one Ardis. She

lighted the way for me. I always offered to quit drinking with here in a

show of solidarity. She always replied " but I don't drink that much " . I

would just sigh. She was in deep denial, and so was I. Love, Bobby

> >

> > http://sweetlorrane.blogspot.com/

> >

> >

> > From: Carolear Carole_ar@...

> >

> > To: livercirrhosissupport

> > Sent: Tuesday, January 24, 2012 9:42 PM

> > Subject: Confused and frustrated newbie

> >

> >

> >

> > Hello everyone.

> > I have been a silent member for a few months, too overwhelmed and

emotional to write. I feel I can write some of my story now and see

what you all think.

> > When I turned 60 last Jan. I decided that I needed a health base

line and went to Mayo Clinic in Arizona twice for about 4 months total.

They ran over 100 tests on me.

> > The reason I went to Mayo is we live in Arkansas and the doctors

come here when they can't get a job anywhere else and don't want to be

watched closely. They are not up on the latest of anything and about

20-30 yrs behind California.in knowledge and skill.

> > One example is my 3 yr old Grandaughter was taken to the doctor for

the possibility of flu....Dr. said she had a sinus infection and sent

her home with antibiotics. Within 12 hours she was dead. Turns out she

had a heart infection! Nothing was done about the Doctor not running

any tests on her.

> > Mayo discovered I have stage 4 severe liver fibrosis/cirrosis....I

had NO IDEA I had anything wrong with my liver. My local doctor I'd

seen for 15 yrs and thought was good.

> > Mayo Clinic was very confusing, and they were confused too. Seems I

have lots of bad liver results, but then other tests aren't so bad and

they didn't offer me any advice because they didn't know what was going

on. I was so shocked...they refused to tell me it was stage 4, refused

to tell me how long I might have left, said there no treatment, I

couldn't have a transplant, and I was too severe to have even a biopsy

and they wouldn't do anything but say I had NASH. (I'm LDS and didn't

drink etc). They gave me no info, 2 recommendations only after I asked

and both of them no longer work in Oklahoma. I didn't know what to do.

> > I came back with a 3 inch binder of test results, reports, xrays,

scans...everything the hospital had, I had a copy of it. I took it

> > to my Doctor of 15 yrs he did not look at a SINGLE PAGE and started

YELLING at me in disgust, telling me that there was nothing wrong with

my liver and I'd wasted my time etc. He ran his own tests that would

show that I had some problems, but he said my liver was fine!! I'd

never been treated so horrible by a doctor. These 'hick town' doctors

still think they are God and make no mistakes. He yelled at me that he

would order that biopsy as there was nothing wrong. I can't believe a

Doctor from Arkansas thought he was above a place like Mayo!

> > Need I say I fired him? I also found out that there are no liver

doctors around here, no support groups and no grief counselors. I am

totally on my own.

> > I spent hours and hours online looking up each test and what it

meant. I didn't even get my MELD score or know anything from it from

Mayo Clinic!!!

> > I didn't know what to do, who to turn to, I was on my own. I

finally after 2 months got to see a Doctor in Oklahoma and I took my big

binder, my research and told her I wanted a BLUNT opinion of where I was

at with my liver. She knew exactly how

> > it happened (untreated fatty liver diagnosed 10 yrs ago!) , I had a

meld score of 7-8, and was stage 4 . All this I already knew...and

found out before she cofirmed it. She said a biopsy wasn't necessary as

I was too far along for any kind of treatment etc. She even said I

could eat what I wanted because I was too far along and knowing wouldn't

make a difference.

> > Then I see my new liver Doctor and she said that my kind of disease

isn't evident like HepC etc...I won't turn yellow and tests results will

be confusing. She was going to write them letters to inform them I'

that I'm indeed much worse than I look....and how the tests will give

wierd answers.

> > Did anyone else on this list get conflicting info and opinions from

every doctor they saw?

> > Did anyone have their friends and family say " Oh, so and so had that

and lived 20 yrs " ....they don't understand I've had a problem for over

12 yrs! I'm not just starting...I'm already at the end.

> > What test results would you like to see on this board so you can

help me make sense of all this confusion?

> > So I have no support except this group. I don't know anything of

what to expect from this illness...what symptoms are.

> > I'm loosing weight and my liver octor didn't realize I didn't know

it was a symptom. I'm sleepy a lot....found out that is a symptom. I

also have times I stay up 30+ hours and then sleep for 24....anyone else

do that?

> > The way I see it is Arkansas doctors killed my Grandaughter and by

their neglect have killed me....and they will go along in their God

place and not think twice about it.

> > Sorry for rambling...it is I'm bouncing off the walls because I

don't know what to expect.

> > Thanks

> > Carole

> >

> >

> >

> >

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Posted
Posted

Bobby

It's sad; but, we become cheap drunks at that point.  Also, I sure get it about

Ardis's last days and having a drink or 2.  Being sober was definitely not

going to make a difference at that point.

I too, was the enabler for my ex.  I honestly didn't know about alcoholic

seizures and so would give him seizure medication with his big glass of cheap

white wine.  Guess it takes these kind of experiences to gain more knowledge.

I don't know if I've said this before; but, I get really annoyed when especially

long-timers say to me " well, at least you didn't have to drink over it " .  A

drink never crosses my mind in the 1st place.  However, my sobriety does.  The

12 steps do not teach me how to " not drink " .  They teach me how to live in a

world that I don't understand cause I never felt like I fit anywhere.  My

favorite phrase is " drinking was not my problem, thinking was the whole problem

and I can still have a whole lot of difficulty with that without a drink " .

I think also that when a person doesn't not have much time to live, a drink is

sure not going to matter much.  Same as smoking and lung cancer!!  Once the

patient has been told that time is basically, quitting is not going to help. 

That's why I get confused about my deceased husband.  He quit smoking 2 or 3

weeks before he died.  I'll bet that he quit before they confirmed the

diagnosis.  Actually, he passed before they could give him a CT Scan, which was

to be that day.

Gloria

________________________________

Gloria, you are correct!

Ardis really didn't drink much near the end, first because she didn't have any

money, and then, after she wasn't able to walk on her own, she was dependent on

me to get it for her.

For a while toward the end of her stay in the camper, and later when she got her

own apartment , I bought her schnapps and gluten free beer with her retirement

money, and explained that since she was kind of in a hospice status without the

official paperwork, drinking wasn't going to cause any harm at that point. I

would hide that schnapps in nooks and crannies in her kitchen, and she would

call in the middle of the night and try in her most sweet voice to ask me if

there were any hidden. The guy at the liquor store would get really annoyed when

I went in and bought all of his half pints of peppermint schnapps. She was

drinking about half of a half pint of schnapps and one bottle of beer a day.

Then, after I took her to the Gastro doctor from South Africa, The lightbulb

went on in my head. She had never even been told that she needed a transplant,

and the doctors treating her just assumed that she wouldn't be qualified.  The

Gastro told us that she should go for a transplant, that she was young and did

not have co morbidities which would prevent her from getting one. When I

realized how severely the doctors at DHMC had dropped her through the cracks, I

demanded a  transplant evaluation.

I felt some pretty deep guilt for being her enabler one minute and trying to get

her a transplant the next. This was all way way against her wishes as well.

Ardis was given an appointment for a transplant eval, and released from the

hospital to a skilled nursing facility instead of her apartment. I did not sneak

her any beer while she was in there and she howled. When she saw the

hepatologist (who is now my own hepatologist) she had 30 days sober, and so was

I! On the second day of the transplant evaluation, the social worker, my wife

Sharon, Ardis and me all agreed to drop the request for a liver transplant, and

the social worker officially disqualified her. The main reason was that a

feeding tube would need to be placed that very afternoon, as her nutritional

status was so poor. None of us could bear any more tubes, needles or hoses,

especially the one being poked, Ardis. As soon as she was back to the nursing

facility, I inquired about rules regarding alcohol, and took Ardis to dinner,

and drank a beer with her. Three days later in the hospice, we drank a beer

together for the last time. 

So the main point is that with both of us, the damage had long been done. I

recognize symptoms I had  from several years back which were from ESLD. Ardis

too. 

Love, Bobby

 

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Thursday, January 26, 2012 7:26 PM

Subject: Re: Confused and frustrated newbie

 

Bobby

Might I say that by the time Ardis was terminal, she may not have been drinking

much.  Likely, the same with you.  I watched an ex, that was having alcoholic

seizures during his drinking and he actually didn't drink hardly any quantity. 

Two large glasses of cheap white wine could put him into a seizure and out cold

for 4 hours.

I was able to get sober during that relationship; because, I knew not to say " I

would never drink again, if that happened to me " .  Blackouts were already the

constant and I sure didn't want to wake up and have a seizure, because there was

no booze left.

Gloria

________________________________

 

Dear Carole... My name is Bobby. I am one of the moderators of this group. I was

diagnosed after watching my best friend die from alcoholic induced liver

cirrhosis. It was a gut wrenching experience needless to say.

I quit drinking, and went looking for the reason for the severe pain I was

having in my upper left quadrant. Doctors kept on saying that they were sure

that I was just imagining things because of my recently lost loved one. I had

learned several medical terms in taking care of her, and they thought I was

projecting liver disease upon myself out of grief. 

My doctor was so doubtful of me having liver disease that she very tersely

stated that " I will go kicking and screaming along with you having a liver

biopsy! " She was sure that  my problem was my gallbladder, and so had me

convince a surgeon to take it out. I asked him to have a looksee when he was in

there at my liver and to biopsy it if he saw anything that looked like

cirrhosis. I woke up from the surgery with him patting me on the shoulder being

told " Im sorry, you do have cirrhosis. I asked him, totally in tears " which part

has cirrhosis? " and he said " all of it " .

Upon me telling my family, I was hit with the " so and so lived with this for

years and years " . 

My wife called up my primary care doctor to ask for a liver transplant

evaluation referral. She said there was silence on the other end for a long

while, because the doctor was in shock.

So I joined this group. Here are some things I found out from this group, and my

experience which I hope is helpful...

I am alive today.

I will be alive until I die.

Life is good.

The needle biopsy is the GOLD standard for the diagnosis of liver disease.

The MELD score goes from 7 to 40 with 40 being the sickest.

Unless a person has had a NEEDLE BIOPSY, then there is a chance that they might

not have cirrhosis.

Even the country's foremost expert could make a misdiagnosis.

The point is that if it were me, I would want the biopsy. I would fight for it.

I still might.

The reason I say this is that the A-hole doctor who did mine used an electo

cautery tool and did a " wedge biopsy " . 

The hepatologist at CU was reluctant to trust it, because the capsule of the

liver is part of the sample, and contains a huge amount of fibrosis, since it is

made of fibrosis.

If the day when I might need a transplant comes around and the transplant team

is in any doubt of my diagnosis, that wedge biopsy could hurt my chances.

Carole, you have come to the right place. We all have what you have and will be

your friend, and share our stories with you. I am sorry for all the crap you had

to go through to get your answers. You are pretty smart to realize that " they "

couldn't be trusted. Doctors have to win my trust, one visit at a time. I fired

two  doctors on the road to my diagnosis. in the mean time, I am going to link

my story again, even though I just did this.  Here is the blog for my loved one

Ardis. She lighted the way for me. I always offered to quit drinking with here

in a show of solidarity. She always replied " but I don't drink that much " . I

would just sigh. She was in deep denial, and so was I. Love, Bobby 

http://sweetlorrane.blogspot.com/

 

To: livercirrhosissupport

Sent: Tuesday, January 24, 2012 9:42 PM

Subject: Confused and frustrated newbie

 

Hello everyone.

I have been a silent member for a few months, too overwhelmed and emotional to

write. I feel I can write some of my story now and see what you all think.

When I turned 60 last Jan. I decided that I needed a health base line and went

to Mayo Clinic in Arizona twice for about 4 months total. They ran over 100

tests on me.

The reason I went to Mayo is we live in Arkansas and the doctors come here when

they can't get a job anywhere else and don't want to be watched closely. They

are not up on the latest of anything and about 20-30 yrs behind California.in

knowledge and skill.

One example is my 3 yr old Grandaughter was taken to the doctor for the

possibility of flu....Dr. said she had a sinus infection and sent her home with

antibiotics. Within 12 hours she was dead. Turns out she had a heart

infection! Nothing was done about the Doctor not running any tests on her.

Mayo discovered I have stage 4 severe liver fibrosis/cirrosis....I had NO IDEA I

had anything wrong with my liver. My local doctor I'd seen for 15 yrs and

thought was good.

Mayo Clinic was very confusing, and they were confused too. Seems I have lots

of bad liver results, but then other tests aren't so bad and they didn't offer

me any advice because they didn't know what was going on. I was so

shocked...they refused to tell me it was stage 4, refused to tell me how long I

might have left, said there no treatment, I couldn't have a transplant, and I

was too severe to have even a biopsy and they wouldn't do anything but say I had

NASH. (I'm LDS and didn't drink etc). They gave me no info, 2 recommendations

only after I asked and both of them no longer work in Oklahoma. I didn't know

what to do.

I came back with a 3 inch binder of test results, reports, xrays,

scans...everything the hospital had, I had a copy of it. I took it

to my Doctor of 15 yrs he did not look at a SINGLE PAGE and started YELLING at

me in disgust, telling me that there was nothing wrong with my liver and I'd

wasted my time etc. He ran his own tests that would show that I had some

problems, but he said my liver was fine!! I'd never been treated so horrible by

a doctor. These 'hick town' doctors still think they are God and make no

mistakes. He yelled at me that he would order that biopsy as there was nothing

wrong. I can't believe a Doctor from Arkansas thought he was above a place like

Mayo!

Need I say I fired him? I also found out that there are no liver doctors

around here, no support groups and no grief counselors. I am totally on my own.

I spent hours and hours online looking up each test and what it meant. I didn't

even get my MELD score or know anything from it from Mayo Clinic!!!

I didn't know what to do, who to turn to, I was on my own. I finally after 2

months got to see a Doctor in Oklahoma and I took my big binder, my research and

told her I wanted a BLUNT opinion of where I was at with my liver. She knew

exactly how

it happened (untreated fatty liver diagnosed 10 yrs ago!) , I had a meld score

of 7-8, and was stage 4 . All this I already knew...and found out before she

cofirmed it. She said a biopsy wasn't necessary as I was too far along for any

kind of treatment etc. She even said I could eat what I wanted because I was

too far along and knowing wouldn't make a difference.

Then I see my new liver Doctor and she said that my kind of disease isn't

evident like HepC etc...I won't turn yellow and tests results will be confusing.

She was going to write them letters to inform them I' that I'm indeed much worse

than I look....and how the tests will give wierd answers.

Did anyone else on this list get conflicting info and opinions from every doctor

they saw?

Did anyone have their friends and family say " Oh, so and so had that and lived

20 yrs " ....they don't understand I've had a problem for over 12 yrs! I'm not

just starting...I'm already at the end.

What test results would you like to see on this board so you can help me make

sense of all this confusion?

So I have no support except this group. I don't know anything of what to expect

from this illness...what symptoms are.

I'm loosing weight and my liver octor didn't realize I didn't know it was a

symptom. I'm sleepy a lot....found out that is a symptom. I also have times I

stay up 30+ hours and then sleep for 24....anyone else do that?

The way I see it is Arkansas doctors killed my Grandaughter and by their neglect

have killed me....and they will go along in their God place and not think twice

about it.

Sorry for rambling...it is I'm bouncing off the walls because I don't know what

to expect.

Thanks

Carole

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Carole,

EVERYONE told me, oh my dad, brother, cousin, uncle had liver disease (or

cirrhosis) and lived 20 years! I felt so angry that these people who were

telling me this, were suppose to be people who cared for and loved my husband.

After all they were his family members.

We go to UTMB in Galveston. We do not have insurance and they take my husband

into the hospital all the time. He presents with ascites. I am not sure of your

symptoms, we go in through the ER to get his " tapped " .

It's usually a really great hospital.

Kim

>

> Hello everyone.

> I have been a silent member for a few months, too overwhelmed and emotional to

write. I feel I can write some of my story now and see what you all think.

> When I turned 60 last Jan. I decided that I needed a health base line and went

to Mayo Clinic in Arizona twice for about 4 months total. They ran over 100

tests on me.

> The reason I went to Mayo is we live in Arkansas and the doctors come here

when they can't get a job anywhere else and don't want to be watched closely.

They are not up on the latest of anything and about 20-30 yrs behind

California.in knowledge and skill.

> One example is my 3 yr old Grandaughter was taken to the doctor for the

possibility of flu....Dr. said she had a sinus infection and sent her home with

antibiotics. Within 12 hours she was dead. Turns out she had a heart

infection! Nothing was done about the Doctor not running any tests on her.

> Mayo discovered I have stage 4 severe liver fibrosis/cirrosis....I had NO IDEA

I had anything wrong with my liver. My local doctor I'd seen for 15 yrs and

thought was good.

> Mayo Clinic was very confusing, and they were confused too. Seems I have lots

of bad liver results, but then other tests aren't so bad and they didn't offer

me any advice because they didn't know what was going on. I was so

shocked...they refused to tell me it was stage 4, refused to tell me how long I

might have left, said there no treatment, I couldn't have a transplant, and I

was too severe to have even a biopsy and they wouldn't do anything but say I had

NASH. (I'm LDS and didn't drink etc). They gave me no info, 2 recommendations

only after I asked and both of them no longer work in Oklahoma. I didn't know

what to do.

> I came back with a 3 inch binder of test results, reports, xrays,

scans...everything the hospital had, I had a copy of it. I took it

> to my Doctor of 15 yrs he did not look at a SINGLE PAGE and started YELLING at

me in disgust, telling me that there was nothing wrong with my liver and I'd

wasted my time etc. He ran his own tests that would show that I had some

problems, but he said my liver was fine!! I'd never been treated so horrible by

a doctor. These 'hick town' doctors still think they are God and make no

mistakes. He yelled at me that he would order that biopsy as there was nothing

wrong. I can't believe a Doctor from Arkansas thought he was above a place like

Mayo!

> Need I say I fired him? I also found out that there are no liver doctors

around here, no support groups and no grief counselors. I am totally on my own.

> I spent hours and hours online looking up each test and what it meant. I

didn't even get my MELD score or know anything from it from Mayo Clinic!!!

> I didn't know what to do, who to turn to, I was on my own. I finally after 2

months got to see a Doctor in Oklahoma and I took my big binder, my research and

told her I wanted a BLUNT opinion of where I was at with my liver. She knew

exactly how

> it happened (untreated fatty liver diagnosed 10 yrs ago!) , I had a meld score

of 7-8, and was stage 4 . All this I already knew...and found out before she

cofirmed it. She said a biopsy wasn't necessary as I was too far along for any

kind of treatment etc. She even said I could eat what I wanted because I was

too far along and knowing wouldn't make a difference.

> Then I see my new liver Doctor and she said that my kind of disease isn't

evident like HepC etc...I won't turn yellow and tests results will be confusing.

She was going to write them letters to inform them I' that I'm indeed much worse

than I look....and how the tests will give wierd answers.

> Did anyone else on this list get conflicting info and opinions from every

doctor they saw?

> Did anyone have their friends and family say " Oh, so and so had that and lived

20 yrs " ....they don't understand I've had a problem for over 12 yrs! I'm not

just starting...I'm already at the end.

> What test results would you like to see on this board so you can help me make

sense of all this confusion?

> So I have no support except this group. I don't know anything of what to

expect from this illness...what symptoms are.

> I'm loosing weight and my liver octor didn't realize I didn't know it was a

symptom. I'm sleepy a lot....found out that is a symptom. I also have times I

stay up 30+ hours and then sleep for 24....anyone else do that?

> The way I see it is Arkansas doctors killed my Grandaughter and by their

neglect have killed me....and they will go along in their God place and not

think twice about it.

> Sorry for rambling...it is I'm bouncing off the walls because I don't know

what to expect.

> Thanks

> Carole

>

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Carole and Kim

First, Carole I am so sorry that it seems that I didn't receive your post and

yet, I do have some memory of it.

Anyway, I heartedly agree with both of you about the off-hand way, that people

seem to have about health issues.  Especially, some else's!!   I used to

wonder how good a friend I would be, if someone I knew was very ill.  Well,

that has long been answered!!  It would not even be close to how I have been

treated.  I'm so tired of the 20 yrs phrase or " I just didn't know what to

say " .  I've told many that it would be nice to start with - Hello.  Now I'm

not even upset by the lack all that much anymore, because it's been happening

for soooo long. 

A long time ago, I had to take myself by the throat and force me, not to be so

shy!!  My self-worth was zero.  Even a psychiatrist complimented me (from the

side of his mouth) at how good I was, keeping my mask in place.  So, I worked

on that issue and actually went to far overboard.  Never hear gossip about

myself; because everyone knows that I will tell you exactly whatever happened. 

However, I have found that as a rule, people on these sites have a whole lot

more compassion than 95% of the folks I know.  Yes, that includes family!!  I

feel that I've been on a very long learning curve now.  Learning all about what

friends I honestly have and those that could only be classed acquaintances.  I

have pulled a long way back since the beginning of this year.  Unfortunately, I

prefer my own company and the internet a whole lot better than most people. 

I've been badly hurt by people or at least, my expectations of them.

Carole, one sad fact that I learned long ago.  There are no symptoms of liver

disease as a rule, until very late stages.  Also, liver enzymes don't always

tell the truth.  In 2004, my liver enzymes were up; but, by the time I had a

biopsy again in 2009, the enzymes were actually reading " normal " and I was fully

stage 4.  Well, cirrhosis causes that!!  The same can be said about an

Alphafetoprotein test (cancer).  Drs can not diagnose the liver by just one

test.

My experienceis that mind numbing exhaustion is at the top of the list for a

hurtin liver.  I am very grateful that I am able to push through, trying to get

rid of my business.  However, I may stay in bed tomorrow until noon.  My dog

and cat love it, when I do that.  They are sooo lazy.  Another big symptom

that a lot of folks get, is the turning of night to day and day to night.  I

have always suffered with a biological clock that says to come alive at 7:00pm

and then not get to bed until who knows when.  Again, the stress of catching

everything up in my work, keeps me fighting that.

I am the same age, Carole!!  I believe that I have come to terms with my

mortality and the only thing that I wish I could stay here for, is

grandchildren.  However, my son is absolutely in no hurry.  So, I have a

couple of surrogate grandchildren, except when I'm mad at their mother.  Then,

I have a couple of great-nieces and a great-nephew, that make me feel so

loved.  These are the people I wish I could stay for; but, obviously my Creator

has other plans for me.  I just say that I hope that I can be a graceful lady

when my time is close.  I once knew a wonderful woman, whom I loved to sit next

to.  She was terminal; but, oh that woman was such a lady.  Always, I just

think about her and the way she handled her cancer.

Gloria

________________________________

 

Carole,

EVERYONE told me, oh my dad, brother, cousin, uncle had liver disease (or

cirrhosis) and lived 20 years! I felt so angry that these people who were

telling me this, were suppose to be people who cared for and loved my husband.

After all they were his family members.

We go to UTMB in Galveston. We do not have insurance and they take my husband

into the hospital all the time. He presents with ascites. I am not sure of your

symptoms, we go in through the ER to get his " tapped " .

It's usually a really great hospital.

Kim

>

> Hello everyone.

> I have been a silent member for a few months, too overwhelmed and emotional to

write. I feel I can write some of my story now and see what you all think.

> When I turned 60 last Jan. I decided that I needed a health base line and went

to Mayo Clinic in Arizona twice for about 4 months total. They ran over 100

tests on me.

> The reason I went to Mayo is we live in Arkansas and the doctors come here

when they can't get a job anywhere else and don't want to be watched closely.

They are not up on the latest of anything and about 20-30 yrs behind

California.in knowledge and skill.

> One example is my 3 yr old Grandaughter was taken to the doctor for the

possibility of flu....Dr. said she had a sinus infection and sent her home with

antibiotics. Within 12 hours she was dead. Turns out she had a heart

infection! Nothing was done about the Doctor not running any tests on her.

> Mayo discovered I have stage 4 severe liver fibrosis/cirrosis....I had NO IDEA

I had anything wrong with my liver. My local doctor I'd seen for 15 yrs and

thought was good.

> Mayo Clinic was very confusing, and they were confused too. Seems I have lots

of bad liver results, but then other tests aren't so bad and they didn't offer

me any advice because they didn't know what was going on. I was so

shocked...they refused to tell me it was stage 4, refused to tell me how long I

might have left, said there no treatment, I couldn't have a transplant, and I

was too severe to have even a biopsy and they wouldn't do anything but say I had

NASH. (I'm LDS and didn't drink etc). They gave me no info, 2 recommendations

only after I asked and both of them no longer work in Oklahoma. I didn't know

what to do.

> I came back with a 3 inch binder of test results, reports, xrays,

scans...everything the hospital had, I had a copy of it. I took it

> to my Doctor of 15 yrs he did not look at a SINGLE PAGE and started YELLING at

me in disgust, telling me that there was nothing wrong with my liver and I'd

wasted my time etc. He ran his own tests that would show that I had some

problems, but he said my liver was fine!! I'd never been treated so horrible by

a doctor. These 'hick town' doctors still think they are God and make no

mistakes. He yelled at me that he would order that biopsy as there was nothing

wrong. I can't believe a Doctor from Arkansas thought he was above a place like

Mayo!

> Need I say I fired him? I also found out that there are no liver doctors

around here, no support groups and no grief counselors. I am totally on my own.

> I spent hours and hours online looking up each test and what it meant. I

didn't even get my MELD score or know anything from it from Mayo Clinic!!!

> I didn't know what to do, who to turn to, I was on my own. I finally after 2

months got to see a Doctor in Oklahoma and I took my big binder, my research and

told her I wanted a BLUNT opinion of where I was at with my liver. She knew

exactly how

> it happened (untreated fatty liver diagnosed 10 yrs ago!) , I had a meld score

of 7-8, and was stage 4 . All this I already knew...and found out before she

cofirmed it. She said a biopsy wasn't necessary as I was too far along for any

kind of treatment etc. She even said I could eat what I wanted because I was

too far along and knowing wouldn't make a difference.

> Then I see my new liver Doctor and she said that my kind of disease isn't

evident like HepC etc...I won't turn yellow and tests results will be confusing.

She was going to write them letters to inform them I' that I'm indeed much worse

than I look....and how the tests will give wierd answers.

> Did anyone else on this list get conflicting info and opinions from every

doctor they saw?

> Did anyone have their friends and family say " Oh, so and so had that and lived

20 yrs " ....they don't understand I've had a problem for over 12 yrs! I'm not

just starting...I'm already at the end.

> What test results would you like to see on this board so you can help me make

sense of all this confusion?

> So I have no support except this group. I don't know anything of what to

expect from this illness...what symptoms are.

> I'm loosing weight and my liver octor didn't realize I didn't know it was a

symptom. I'm sleepy a lot....found out that is a symptom. I also have times I

stay up 30+ hours and then sleep for 24....anyone else do that?

> The way I see it is Arkansas doctors killed my Grandaughter and by their

neglect have killed me....and they will go along in their God place and not

think twice about it.

> Sorry for rambling...it is I'm bouncing off the walls because I don't know

what to expect.

> Thanks

> Carole

>

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Posted
Posted

My husband and I love Vanderbilt!!  they got a wonderful dr. over there who is

very blunt and compassionate if such can be.  When we went to see him for my

husband.  he sat down with us explain every thing and ask us to ask questions

and took time to answer all of them. He even sat there for some time letting

everything sink in and waited for us to be ready to leave. 

reading your story is so much like my husband; except we knew more from the

beginning not much more.  His also started off as a fatty liver and through the

years came to end stage. 

what i have personally learn is: no one can tell you how long.  that there will

be good days and bad days.

my darling does what you do up for long periods at a time and then sleep and

sleep.  then it is where he is sleepy and sleeps most the time.  at the moment

he is more awake then sleep.  he says he is sleepy but can't seem to sleep for

very long at a time.

i don't know if i can be of much help;  but i can tell you what he went through

and is going through if you think that will be of some help.  later I can post

his story of the last ten years; if you want.

this is a confusing illness IMO.

thyra

________________________________

To: livercirrhosissupport

Sent: Thursday, February 16, 2012 11:56 PM

Subject: Re: Confused and frustrated newbie

 

Carole,

EVERYONE told me, oh my dad, brother, cousin, uncle had liver disease (or

cirrhosis) and lived 20 years! I felt so angry that these people who were

telling me this, were suppose to be people who cared for and loved my husband.

After all they were his family members.

We go to UTMB in Galveston. We do not have insurance and they take my husband

into the hospital all the time. He presents with ascites. I am not sure of your

symptoms, we go in through the ER to get his " tapped " .

It's usually a really great hospital.

Kim

>

> Hello everyone.

> I have been a silent member for a few months, too overwhelmed and emotional to

write. I feel I can write some of my story now and see what you all think.

> When I turned 60 last Jan. I decided that I needed a health base line and went

to Mayo Clinic in Arizona twice for about 4 months total. They ran over 100

tests on me.

> The reason I went to Mayo is we live in Arkansas and the doctors come here

when they can't get a job anywhere else and don't want to be watched closely.

They are not up on the latest of anything and about 20-30 yrs behind

California.in knowledge and skill.

> One example is my 3 yr old Grandaughter was taken to the doctor for the

possibility of flu....Dr. said she had a sinus infection and sent her home with

antibiotics. Within 12 hours she was dead. Turns out she had a heart

infection! Nothing was done about the Doctor not running any tests on her.

> Mayo discovered I have stage 4 severe liver fibrosis/cirrosis....I had NO IDEA

I had anything wrong with my liver. My local doctor I'd seen for 15 yrs and

thought was good.

> Mayo Clinic was very confusing, and they were confused too. Seems I have lots

of bad liver results, but then other tests aren't so bad and they didn't offer

me any advice because they didn't know what was going on. I was so

shocked...they refused to tell me it was stage 4, refused to tell me how long I

might have left, said there no treatment, I couldn't have a transplant, and I

was too severe to have even a biopsy and they wouldn't do anything but say I had

NASH. (I'm LDS and didn't drink etc). They gave me no info, 2 recommendations

only after I asked and both of them no longer work in Oklahoma. I didn't know

what to do.

> I came back with a 3 inch binder of test results, reports, xrays,

scans...everything the hospital had, I had a copy of it. I took it

> to my Doctor of 15 yrs he did not look at a SINGLE PAGE and started YELLING at

me in disgust, telling me that there was nothing wrong with my liver and I'd

wasted my time etc. He ran his own tests that would show that I had some

problems, but he said my liver was fine!! I'd never been treated so horrible by

a doctor. These 'hick town' doctors still think they are God and make no

mistakes. He yelled at me that he would order that biopsy as there was nothing

wrong. I can't believe a Doctor from Arkansas thought he was above a place like

Mayo!

> Need I say I fired him? I also found out that there are no liver doctors

around here, no support groups and no grief counselors. I am totally on my own.

> I spent hours and hours online looking up each test and what it meant. I

didn't even get my MELD score or know anything from it from Mayo Clinic!!!

> I didn't know what to do, who to turn to, I was on my own. I finally after 2

months got to see a Doctor in Oklahoma and I took my big binder, my research and

told her I wanted a BLUNT opinion of where I was at with my liver. She knew

exactly how

> it happened (untreated fatty liver diagnosed 10 yrs ago!) , I had a meld score

of 7-8, and was stage 4 . All this I already knew...and found out before she

cofirmed it. She said a biopsy wasn't necessary as I was too far along for any

kind of treatment etc. She even said I could eat what I wanted because I was

too far along and knowing wouldn't make a difference.

> Then I see my new liver Doctor and she said that my kind of disease isn't

evident like HepC etc...I won't turn yellow and tests results will be confusing.

She was going to write them letters to inform them I' that I'm indeed much worse

than I look....and how the tests will give wierd answers.

> Did anyone else on this list get conflicting info and opinions from every

doctor they saw?

> Did anyone have their friends and family say " Oh, so and so had that and lived

20 yrs " ....they don't understand I've had a problem for over 12 yrs! I'm not

just starting...I'm already at the end.

> What test results would you like to see on this board so you can help me make

sense of all this confusion?

> So I have no support except this group. I don't know anything of what to

expect from this illness...what symptoms are.

> I'm loosing weight and my liver octor didn't realize I didn't know it was a

symptom. I'm sleepy a lot....found out that is a symptom. I also have times I

stay up 30+ hours and then sleep for 24....anyone else do that?

> The way I see it is Arkansas doctors killed my Grandaughter and by their

neglect have killed me....and they will go along in their God place and not

think twice about it.

> Sorry for rambling...it is I'm bouncing off the walls because I don't know

what to expect.

> Thanks

> Carole

>

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Posted
Posted

Yes, please post the things I should know and watch for and expect. I so wish

there was a support group, but there are none within 2-4 hours of me. Where is

Vanderbilt?

It is truly scarey to be in an 'backwards' area. I fell and hit hard....real

hard. I was worried about bleeding internally as my platelets are under 90....

I hit my face and head and got dizzy. I thought for sure they'd keep me over

night as I also have a bleeding problem. Nope...didn't even check the

platelets. Tried calling my Doctor who is 2 hours away, and they refused to

call her as she wasnt the on call doctor that night...and they were sure there

were good Doctors where I live. (Why would I go 2 hours to her if there were???)

The ER doctor didn't care about liver or bleeding. Did a blood test but not

even a platelet count. The MODERN Doctor of today only treats you for one

thing...make more appts if you have other concerns.

So when I really become ill...where/what do I go??? Everyone around here says

" Oh, it isn't that bad. And that sometimes abnormal test results are normal for

that person.....grrr... "

I have a lot of candida in my bowels and doctor noted it and said we'd have to

watch my DIABETIES better. That was it...no suggestions etc. I have fecal

incontinencr and I'm sure this has to do with it. But the doctor thinks I have

little diahrea............../

Sure...for over 2 yrs and it prevents me from going places as I have many

embarrassing moments with this. and the odor is terrible.

Are there any great hospitals in Ar, Mo, Ok or Dallas?

I have zero support from family, except my youngest who is 31. And no support

from Doctor or any groups. I wish there were conference groups online with web

cam so we who have none could still be in one.

Please, don't hold back ANYTHING...

Thanks

Carole

---- thyra heyd wrote:

=============

My husband and I love Vanderbilt!!  they got a wonderful dr. over there who is

very blunt and compassionate if such can be.  When we went to see him for my

husband.  he sat down with us explain every thing and ask us to ask questions

and took time to answer all of them. He even sat there for some time letting

everything sink in and waited for us to be ready to leave. 

reading your story is so much like my husband; except we knew more from the

beginning not much more.  His also started off as a fatty liver and through the

years came to end stage. 

what i have personally learn is: no one can tell you how long.  that there will

be good days and bad days.

my darling does what you do up for long periods at a time and then sleep and

sleep.  then it is where he is sleepy and sleeps most the time.  at the moment

he is more awake then sleep.  he says he is sleepy but can't seem to sleep for

very long at a time.

i don't know if i can be of much help;  but i can tell you what he went through

and is going through if you think that will be of some help.  later I can post

his story of the last ten years; if you want.

this is a confusing illness IMO.

thyra

________________________________

To: livercirrhosissupport

Sent: Thursday, February 16, 2012 11:56 PM

Subject: Re: Confused and frustrated newbie

 

Carole,

EVERYONE told me, oh my dad, brother, cousin, uncle had liver disease (or

cirrhosis) and lived 20 years! I felt so angry that these people who were

telling me this, were suppose to be people who cared for and loved my husband.

After all they were his family members.

We go to UTMB in Galveston. We do not have insurance and they take my husband

into the hospital all the time. He presents with ascites. I am not sure of your

symptoms, we go in through the ER to get his " tapped " .

It's usually a really great hospital.

Kim

>

> Hello everyone.

> I have been a silent member for a few months, too overwhelmed and emotional to

write. I feel I can write some of my story now and see what you all think.

> When I turned 60 last Jan. I decided that I needed a health base line and went

to Mayo Clinic in Arizona twice for about 4 months total. They ran over 100

tests on me.

> The reason I went to Mayo is we live in Arkansas and the doctors come here

when they can't get a job anywhere else and don't want to be watched closely.

They are not up on the latest of anything and about 20-30 yrs behind

California.in knowledge and skill.

> One example is my 3 yr old Grandaughter was taken to the doctor for the

possibility of flu....Dr. said she had a sinus infection and sent her home with

antibiotics. Within 12 hours she was dead. Turns out she had a heart

infection! Nothing was done about the Doctor not running any tests on her.

> Mayo discovered I have stage 4 severe liver fibrosis/cirrosis....I had NO IDEA

I had anything wrong with my liver. My local doctor I'd seen for 15 yrs and

thought was good.

> Mayo Clinic was very confusing, and they were confused too. Seems I have lots

of bad liver results, but then other tests aren't so bad and they didn't offer

me any advice because they didn't know what was going on. I was so

shocked...they refused to tell me it was stage 4, refused to tell me how long I

might have left, said there no treatment, I couldn't have a transplant, and I

was too severe to have even a biopsy and they wouldn't do anything but say I had

NASH. (I'm LDS and didn't drink etc). They gave me no info, 2 recommendations

only after I asked and both of them no longer work in Oklahoma. I didn't know

what to do.

> I came back with a 3 inch binder of test results, reports, xrays,

scans...everything the hospital had, I had a copy of it. I took it

> to my Doctor of 15 yrs he did not look at a SINGLE PAGE and started YELLING at

me in disgust, telling me that there was nothing wrong with my liver and I'd

wasted my time etc. He ran his own tests that would show that I had some

problems, but he said my liver was fine!! I'd never been treated so horrible by

a doctor. These 'hick town' doctors still think they are God and make no

mistakes. He yelled at me that he would order that biopsy as there was nothing

wrong. I can't believe a Doctor from Arkansas thought he was above a place like

Mayo!

> Need I say I fired him? I also found out that there are no liver doctors

around here, no support groups and no grief counselors. I am totally on my own.

> I spent hours and hours online looking up each test and what it meant. I

didn't even get my MELD score or know anything from it from Mayo Clinic!!!

> I didn't know what to do, who to turn to, I was on my own. I finally after 2

months got to see a Doctor in Oklahoma and I took my big binder, my research and

told her I wanted a BLUNT opinion of where I was at with my liver. She knew

exactly how

> it happened (untreated fatty liver diagnosed 10 yrs ago!) , I had a meld score

of 7-8, and was stage 4 . All this I already knew...and found out before she

cofirmed it. She said a biopsy wasn't necessary as I was too far along for any

kind of treatment etc. She even said I could eat what I wanted because I was

too far along and knowing wouldn't make a difference.

> Then I see my new liver Doctor and she said that my kind of disease isn't

evident like HepC etc...I won't turn yellow and tests results will be confusing.

She was going to write them letters to inform them I' that I'm indeed much worse

than I look....and how the tests will give wierd answers.

> Did anyone else on this list get conflicting info and opinions from every

doctor they saw?

> Did anyone have their friends and family say " Oh, so and so had that and lived

20 yrs " ....they don't understand I've had a problem for over 12 yrs! I'm not

just starting...I'm already at the end.

> What test results would you like to see on this board so you can help me make

sense of all this confusion?

> So I have no support except this group. I don't know anything of what to

expect from this illness...what symptoms are.

> I'm loosing weight and my liver octor didn't realize I didn't know it was a

symptom. I'm sleepy a lot....found out that is a symptom. I also have times I

stay up 30+ hours and then sleep for 24....anyone else do that?

> The way I see it is Arkansas doctors killed my Grandaughter and by their

neglect have killed me....and they will go along in their God place and not

think twice about it.

> Sorry for rambling...it is I'm bouncing off the walls because I don't know

what to expect.

> Thanks

> Carole

>

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Posted
Posted

Vanderbilt is in Nashville, TN.  you can check them out on the net.  I think

if you could get in there and see them you will be happy with them.  they had a

team of doctors working on my hubby while he was there and there was one i could

of just slap.  but he was good at what he did.  just bad bedside manners;  i

had refuse to leave my hubby when they where going to band him; i didn't know

what was happening and wanted to know.needed to know as i had his medical POA. 

and knew what he wanted and didn't want.  they would of had to bodily remove me

if they hadn't finally decided to tell me what was happening and why. 

every one there from maintenance to the doctor's where great!! yes even doc

almighty.  lol

my brother lives in Ak. and really does not like their medical at all. 

as for what my hubby is going through it changes from moment to moment.  just

like the last 24 hours he doesn't sleep much, has his day and nights turn

around, his stomach hurts, more so after eating, but he is hungry. his legs and

feet are painful and very dry.  he also has diabetes and all that comes with

that. he has these strange spots that shows up on his hands and arms and then

goes away.  doc. don't even know what that is.  but watching it.  his sugars

is doing well; he is thinking good; but ... if he does what he has in the pass

he will get so sleepy that he will have a hard time staying awake and not

wanting to eat.  and depending on how long he doesn't sleep he will get loopy

acting. and then no one sleeps. 

there are times; lots of them; when he will wake me in the middle of the night

as his pain is bad and the med isn't working.  so those nights i just sit up

with him and we talk and try to take his mind off the pain.

do you live alone? do you have anyone to help you?

________________________________

To: livercirrhosissupport

Cc: thyra heyd

Sent: Friday, February 17, 2012 6:04 AM

Subject: Re: Re: Confused and frustrated newbie

 

Yes, please post the things I should know and watch for and expect. I so wish

there was a support group, but there are none within 2-4 hours of me. Where is

Vanderbilt?

It is truly scarey to be in an 'backwards' area. I fell and hit hard....real

hard. I was worried about bleeding internally as my platelets are under 90....

I hit my face and head and got dizzy. I thought for sure they'd keep me over

night as I also have a bleeding problem. Nope...didn't even check the

platelets. Tried calling my Doctor who is 2 hours away, and they refused to

call her as she wasnt the on call doctor that night...and they were sure there

were good Doctors where I live. (Why would I go 2 hours to her if there were???)

The ER doctor didn't care about liver or bleeding. Did a blood test but not

even a platelet count. The MODERN Doctor of today only treats you for one

thing...make more appts if you have other concerns.

So when I really become ill...where/what do I go??? Everyone around here says

" Oh, it isn't that bad. And that sometimes abnormal test results are normal for

that person.....grrr... "

I have a lot of candida in my bowels and doctor noted it and said we'd have to

watch my DIABETIES better. That was it...no suggestions etc. I have fecal

incontinencr and I'm sure this has to do with it. But the doctor thinks I have

little diahrea............../

Sure...for over 2 yrs and it prevents me from going places as I have many

embarrassing moments with this. and the odor is terrible.

Are there any great hospitals in Ar, Mo, Ok or Dallas?

I have zero support from family, except my youngest who is 31. And no support

from Doctor or any groups. I wish there were conference groups online with web

cam so we who have none could still be in one.

Please, don't hold back ANYTHING...

Thanks

Carole

---- thyra heyd wrote:

=============

My husband and I love Vanderbilt!!  they got a wonderful dr. over there who is

very blunt and compassionate if such can be.  When we went to see him for my

husband.  he sat down with us explain every thing and ask us to ask questions

and took time to answer all of them. He even sat there for some time letting

everything sink in and waited for us to be ready to leave. 

reading your story is so much like my husband; except we knew more from the

beginning not much more.  His also started off as a fatty liver and through the

years came to end stage. 

what i have personally learn is: no one can tell you how long.  that there will

be good days and bad days.

my darling does what you do up for long periods at a time and then sleep and

sleep.  then it is where he is sleepy and sleeps most the time.  at the moment

he is more awake then sleep.  he says he is sleepy but can't seem to sleep for

very long at a time.

i don't know if i can be of much help;  but i can tell you what he went through

and is going through if you think that will be of some help.  later I can post

his story of the last ten years; if you want.

this is a confusing illness IMO.

thyra

________________________________

To: livercirrhosissupport

Sent: Thursday, February 16, 2012 11:56 PM

Subject: Re: Confused and frustrated newbie

 

Carole,

EVERYONE told me, oh my dad, brother, cousin, uncle had liver disease (or

cirrhosis) and lived 20 years! I felt so angry that these people who were

telling me this, were suppose to be people who cared for and loved my husband.

After all they were his family members.

We go to UTMB in Galveston. We do not have insurance and they take my husband

into the hospital all the time. He presents with ascites. I am not sure of your

symptoms, we go in through the ER to get his " tapped " .

It's usually a really great hospital.

Kim

>

> Hello everyone.

> I have been a silent member for a few months, too overwhelmed and emotional to

write. I feel I can write some of my story now and see what you all think.

> When I turned 60 last Jan. I decided that I needed a health base line and went

to Mayo Clinic in Arizona twice for about 4 months total. They ran over 100

tests on me.

> The reason I went to Mayo is we live in Arkansas and the doctors come here

when they can't get a job anywhere else and don't want to be watched closely.

They are not up on the latest of anything and about 20-30 yrs behind

California.in knowledge and skill.

> One example is my 3 yr old Grandaughter was taken to the doctor for the

possibility of flu....Dr. said she had a sinus infection and sent her home with

antibiotics. Within 12 hours she was dead. Turns out she had a heart

infection! Nothing was done about the Doctor not running any tests on her.

> Mayo discovered I have stage 4 severe liver fibrosis/cirrosis....I had NO IDEA

I had anything wrong with my liver. My local doctor I'd seen for 15 yrs and

thought was good.

> Mayo Clinic was very confusing, and they were confused too. Seems I have lots

of bad liver results, but then other tests aren't so bad and they didn't offer

me any advice because they didn't know what was going on. I was so

shocked...they refused to tell me it was stage 4, refused to tell me how long I

might have left, said there no treatment, I couldn't have a transplant, and I

was too severe to have even a biopsy and they wouldn't do anything but say I had

NASH. (I'm LDS and didn't drink etc). They gave me no info, 2 recommendations

only after I asked and both of them no longer work in Oklahoma. I didn't know

what to do.

> I came back with a 3 inch binder of test results, reports, xrays,

scans...everything the hospital had, I had a copy of it. I took it

> to my Doctor of 15 yrs he did not look at a SINGLE PAGE and started YELLING at

me in disgust, telling me that there was nothing wrong with my liver and I'd

wasted my time etc. He ran his own tests that would show that I had some

problems, but he said my liver was fine!! I'd never been treated so horrible by

a doctor. These 'hick town' doctors still think they are God and make no

mistakes. He yelled at me that he would order that biopsy as there was nothing

wrong. I can't believe a Doctor from Arkansas thought he was above a place like

Mayo!

> Need I say I fired him? I also found out that there are no liver doctors

around here, no support groups and no grief counselors. I am totally on my own.

> I spent hours and hours online looking up each test and what it meant. I

didn't even get my MELD score or know anything from it from Mayo Clinic!!!

> I didn't know what to do, who to turn to, I was on my own. I finally after 2

months got to see a Doctor in Oklahoma and I took my big binder, my research and

told her I wanted a BLUNT opinion of where I was at with my liver. She knew

exactly how

> it happened (untreated fatty liver diagnosed 10 yrs ago!) , I had a meld score

of 7-8, and was stage 4 . All this I already knew...and found out before she

cofirmed it. She said a biopsy wasn't necessary as I was too far along for any

kind of treatment etc. She even said I could eat what I wanted because I was

too far along and knowing wouldn't make a difference.

> Then I see my new liver Doctor and she said that my kind of disease isn't

evident like HepC etc...I won't turn yellow and tests results will be confusing.

She was going to write them letters to inform them I' that I'm indeed much worse

than I look....and how the tests will give wierd answers.

> Did anyone else on this list get conflicting info and opinions from every

doctor they saw?

> Did anyone have their friends and family say " Oh, so and so had that and lived

20 yrs " ....they don't understand I've had a problem for over 12 yrs! I'm not

just starting...I'm already at the end.

> What test results would you like to see on this board so you can help me make

sense of all this confusion?

> So I have no support except this group. I don't know anything of what to

expect from this illness...what symptoms are.

> I'm loosing weight and my liver octor didn't realize I didn't know it was a

symptom. I'm sleepy a lot....found out that is a symptom. I also have times I

stay up 30+ hours and then sleep for 24....anyone else do that?

> The way I see it is Arkansas doctors killed my Grandaughter and by their

neglect have killed me....and they will go along in their God place and not

think twice about it.

> Sorry for rambling...it is I'm bouncing off the walls because I don't know

what to expect.

> Thanks

> Carole

>

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