Re: First Hints of Liver Disease?

[Guest guest]

Hi ,

You asked Lori how she first learned how she had liver disease. I was

cleaning out some old computer files and found a couple of letters written

to a relative, one written 3 weeks before I was hospitalized with AIH and

the other written two weeks after I got out of the hospital but was still

undiagnosed. What a difference two years can make!:

October 24, 1997

" I've been battling something and whatever it is, I've been a little or

very ill most of the time. I finally located a doctor. From blood tests

he found elevated " elastase " which apparently has something to do with

liver function. It could mean nothing. I've also had heart palpitations,

which can be caused by stress. However, on an EKG he found a definite

" spike " and is going to look further into that too. Then, there's that

infernal insomnia. It's not possible for me to sleep for more than a

continuous hour, no matter how tired I am, and that's if I can even go to

sleep to begin with. There are other things too. Respiratory problems,

stomach pains and nausea, a strange skin rash. To me it points to some

kind of chemical or environmental poisoning. "

On November 18 1997 I was hospitalized for five days and had a liver

biopsy. I was told that I had PBC, had stage IV cirrhosis, stage 3-4

inflammation and end-stage liver disease.

November 30,1997

" I don't yet know how serious my condition is. I've been quite ill a few

times but the biggest problem is terrible fatigue so I can only last on my

feet for about 10-15 minutes and have to lie down. I'm terrified of

another blockage but seeing doctors twice a week should keep track of those

eventualities. My liver is apparently destroyed and isn't going to get

better. The big question is whether or not they can do anything to

stabilize me. Mostly, my problem is itching, nausea and fatigue. I've

also lost 32 pounds so far and I hope I don't lose more though a pound or

so drops every few days. Probably due to lack of appetite. The prospect

of a liver transplant doesn't thrill me, especially since they aren't

always successful and even when they are, they seldom prolong life by more

than two years. I don't know how soon I'll be put on the transplant

list. I keep hoping the whole scenario will change and I'll just get

" well " all of a sudden. "

On December 31, 1997 I finally saw a Hepatologist who reviewed all labs and

the biopsy and he diagnosed AIH. I was referred for immediate

pre-transplant evaluation at Pacific Medical Center in San

Francisco. However, because of my insurance, I went to Scripps in La Jolla

instead. They confirmed that I had AIH, not PBC, and began the

pre-transplant evaluation. It took about six months before they decided

that I'd had extraordinary response to anti-rejection drugs and was in

remission.

Interesting how all of us have had different pre-diagnosis experiences.

Geri

>ahnLoriFrom: " susan johnson " <shireen42@...>

>

>Lori,

>

>How did you first come to know that you had a medical problem that

>utimately turned out to be your liver.

>

>Nice pic!

>

> J

>

>

>>From: " Lori Cummins " <tlknj@...>

>>Reply- onelist

>>< onelist>

>>Subject: Re: [ ] Hello

>>Date: Thu, 28 Oct 1999 15:23:38 -0500

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>>

>>Hi Debbie, My name is Lori C. and i had a liver tx on 3~11~97. I was

>>diagnosed in July 1996, but was figured that I had AIH as long as since

>>1983~ that would be about 13 years I had it before I was finally diagnosed.

>>I was one of the UNLUCKY ones and by the time I was diagnosed in July 1996,

>>I was told I needed to be listed, so I was put through evaluation in Sept,

>>and Oct. and then listed on Oct. 18, 1996, and was given 1 year to live, I

>>had end~stage cirrhosis by that time.

>>I was transplanted in March 1997 and the surgeon said the liver was so hard

>>and so cirrhotic, It was amazing that I hade made it that long, and said

>>without the transplant I would not have lived to see the summer of 1997.

>>I guess in my case it was difficult because I was not diagnosed soon enough

>>to be able to go into a remission state, and be o.k.. On meds.

>>So I just have to thank God, that I did get a transplant. You know I thought

>>before the transplant, man that just isn't going to be a very good life to

>>have to live that way on meds, but life post~transplant sure beats living

>>with the AIH.

>> Take Care!! Lori C. AIH transplanted

>>

>>

>> [ ] Hello

>>

>>

>> >From: " debbie kearbey " <dlk3cids@...>

>> >

>> >Hello

>> > I have a question to whom has had a liver transplant. How long have you

>> >had AIH? When do they decide to do a liver transplant? I have had AIH for

>> >a year now. Just curious about how thay decide all of these things.

>> >Debbie-IL AIH

>> >

>> > [ ] Re Alternative treatments

>> >> >Date: Mon, 25 Oct 1999 16:25:25 -0400

>> >> >

>> >> ><< text2.html >>

>> >> ><< text3.html >>

>> >>

>> >>

>> >>

>> >___________________________________________________________________________

>>_

>> >___

>> >>

>> >___________________________________________________________________________

>>_

>> >___

>> >>

>> >>

>> >

>> >>Please support the American Liver Foundation!

>> >

>> >1.) To subscribe send e-mail to -subscribeonelist

>> >2.) To UNsubscribe send to -unsubscribeonelist

>> >3.) Digest e-mail format send to -digestonelist

>> >4.) Normal e-mail format send to -normalonelist

>> >

>>

>>

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

>>Please support the American Liver Foundation!

>>

>>1.) To subscribe send e-mail to -subscribeonelist

>>2.) To UNsubscribe send to -unsubscribeonelist

>>3.) Digest e-mail format send to -digestonelist

>>4.) Normal e-mail format send to -normalonelist

>><< text3.html >>

>

>>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

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>4.) Normal e-mail format send to -normalonelist

[Guest guest]

Geri and Lori,

That is what I am afraid of, that docs say nothing to worry about and then

will suddenly be so bad off that will need transplant or die. I have so

many symptoms of liver disease. I suppose they think it is all in my mind.

J

>From: Geri Spang <spangs@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] First Hints of Liver Disease?

>Date: Fri, 29 Oct 1999 02:50:04 -0700

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>Hi ,

>You asked Lori how she first learned how she had liver disease. I was

>cleaning out some old computer files and found a couple of letters written

>to a relative, one written 3 weeks before I was hospitalized with AIH and

>the other written two weeks after I got out of the hospital but was still

>undiagnosed. What a difference two years can make!:

>

>October 24, 1997

> " I've been battling something and whatever it is, I've been a little or

>very ill most of the time. I finally located a doctor. From blood tests

>he found elevated " elastase " which apparently has something to do with

>liver function. It could mean nothing. I've also had heart palpitations,

>which can be caused by stress. However, on an EKG he found a definite

> " spike " and is going to look further into that too. Then, there's that

>infernal insomnia. It's not possible for me to sleep for more than a

>continuous hour, no matter how tired I am, and that's if I can even go to

>sleep to begin with. There are other things too. Respiratory problems,

>stomach pains and nausea, a strange skin rash. To me it points to some

>kind of chemical or environmental poisoning. "

>

>On November 18 1997 I was hospitalized for five days and had a liver

>biopsy. I was told that I had PBC, had stage IV cirrhosis, stage 3-4

>inflammation and end-stage liver disease.

>

>November 30,1997

> " I don't yet know how serious my condition is. I've been quite ill a few

>times but the biggest problem is terrible fatigue so I can only last on my

>feet for about 10-15 minutes and have to lie down. I'm terrified of

>another blockage but seeing doctors twice a week should keep track of those

>eventualities. My liver is apparently destroyed and isn't going to get

>better. The big question is whether or not they can do anything to

>stabilize me. Mostly, my problem is itching, nausea and fatigue. I've

>also lost 32 pounds so far and I hope I don't lose more though a pound or

>so drops every few days. Probably due to lack of appetite. The prospect

>of a liver transplant doesn't thrill me, especially since they aren't

>always successful and even when they are, they seldom prolong life by more

>than two years. I don't know how soon I'll be put on the transplant

>list. I keep hoping the whole scenario will change and I'll just get

> " well " all of a sudden. "

>

>On December 31, 1997 I finally saw a Hepatologist who reviewed all labs and

>the biopsy and he diagnosed AIH. I was referred for immediate

>pre-transplant evaluation at Pacific Medical Center in San

>Francisco. However, because of my insurance, I went to Scripps in La Jolla

>instead. They confirmed that I had AIH, not PBC, and began the

>pre-transplant evaluation. It took about six months before they decided

>that I'd had extraordinary response to anti-rejection drugs and was in

>remission.

>

>Interesting how all of us have had different pre-diagnosis experiences.

>

>Geri

>

>

>>ahnLoriFrom: " susan johnson " <shireen42@...>

>>

>>Lori,

>>

>>How did you first come to know that you had a medical problem that

>>utimately turned out to be your liver.

>>

>>Nice pic!

>>

>> J

>>

>>

>>>From: " Lori Cummins " <tlknj@...>

>>>Reply- onelist

>>>< onelist>

>>>Subject: Re: [ ] Hello

>>>Date: Thu, 28 Oct 1999 15:23:38 -0500

>>>MIME-Version: 1.0

>>From errors-165537-7723-shireen42 Thu Oct 28 13:24:47 1999

>>>Received: from [209.207.164.237] by hotmail.com (3.2) with ESMTP id

>>>MHotMailB9E1FC0E003DD820F3ACD1CFA4ED0CB10; Thu Oct 28 13:24:47 1999

>>>Received: (qmail 32217 invoked by alias); 28 Oct 1999 20:24:35 -0000

>>>Received: (qmail 32186 invoked from network); 28 Oct 1999 20:24:34 -0000

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>>>28 Oct 1999 20:24:34 -0000

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>>>mta1.onelist.com with SMTP; 28 Oct 1999 20:24:31 -0000

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>>>m1.rconnect.com (8.9.3/8.9.3) with SMTP id PAA02752 for

>>>< onelist>; Thu, 28 Oct 1999 15:24:25 -0500 (CDT)

>>>Message-ID: <000601bf2182$538a4960$8f0ba3d1@tknlj>

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>>>X-MSMail-Priority: Normal

>>>X-Mailer: Microsoft Outlook Express 4.72.3110.1

>>>X-MimeOLE: Produced By Microsoft MimeOLE V4.72.3110.3

>>>Mailing-List: list onelist; contact

>>> -owneronelist

>>>Delivered-mailing list onelist

>>>Precedence: bulk

>>>List-Unsubscribe: <mailto: -unsubscribeONElist>

>>>

>>>Hi Debbie, My name is Lori C. and i had a liver tx on 3~11~97. I was

>>>diagnosed in July 1996, but was figured that I had AIH as long as since

>>>1983~ that would be about 13 years I had it before I was finally

>>>diagnosed.

>>>I was one of the UNLUCKY ones and by the time I was diagnosed in July

>>>1996,

>>>I was told I needed to be listed, so I was put through evaluation in

>>>Sept,

>>>and Oct. and then listed on Oct. 18, 1996, and was given 1 year to live,

>>>I

>>>had end~stage cirrhosis by that time.

>>>I was transplanted in March 1997 and the surgeon said the liver was so

>>>hard

>>>and so cirrhotic, It was amazing that I hade made it that long, and said

>>>without the transplant I would not have lived to see the summer of 1997.

>>>I guess in my case it was difficult because I was not diagnosed soon

>>>enough

>>>to be able to go into a remission state, and be o.k.. On meds.

>>>So I just have to thank God, that I did get a transplant. You know I

>>>thought

>>>before the transplant, man that just isn't going to be a very good life

>>>to

>>>have to live that way on meds, but life post~transplant sure beats living

>>>with the AIH.

>>> Take Care!! Lori C. AIH transplanted

>>>

>>>

>>> [ ] Hello

>>>

>>>

>>> >From: " debbie kearbey " <dlk3cids@...>

>>> >

>>> >Hello

>>> > I have a question to whom has had a liver transplant. How long have

>>>you

>>> >had AIH? When do they decide to do a liver transplant? I have had AIH

>>>for

>>> >a year now. Just curious about how thay decide all of these things.

>>> >Debbie-IL AIH

>>> >

>>> > [ ] Re Alternative treatments

>>> >> >Date: Mon, 25 Oct 1999 16:25:25 -0400

>>> >> >

>>> >> ><< text2.html >>

>>> >> ><< text3.html >>

>>> >>

>>> >>

>>> >>

>>> >___________________________________________________________________________

>>>_

>>> >___

>>> >>

>>> >___________________________________________________________________________

>>>_

>>> >___

>>> >>

>>> >>

>>> >

>>> >>Please support the American Liver Foundation!

>>> >

>>> >1.) To subscribe send e-mail to -subscribeonelist

>>> >2.) To UNsubscribe send to -unsubscribeonelist

>>> >3.) Digest e-mail format send to -digestonelist

>>> >4.) Normal e-mail format send to -normalonelist

>>> >

>>>

>>>

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

>>>Please support the American Liver Foundation!

>>>

>>>1.) To subscribe send e-mail to -subscribeonelist

>>>2.) To UNsubscribe send to -unsubscribeonelist

>>>3.) Digest e-mail format send to -digestonelist

>>>4.) Normal e-mail format send to -normalonelist

>>><< text3.html >>

>>

>>>Please support the American Liver Foundation!

>>

>>1.) To subscribe send e-mail to -subscribeonelist

>>2.) To UNsubscribe send to -unsubscribeonelist

>>3.) Digest e-mail format send to -digestonelist

>>4.) Normal e-mail format send to -normalonelist

>

>

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

>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

><< text3.html >>

[Guest guest]

Hi ,

I had a liver transplant because of tylenol poisening, I may not of had to go

through all the surgery and pain, had the doctors been more alert. A year ago

in June I was housesitting in the mountains when I had this strange attack

similar to a kidney stone attack, for 10 hours I hung over the toilet and had

so much pain in my stomach I wanted to die. The next day when the pain

subsided I went to see my doctor, he told me it was foodpoisening. The

student doctor said it might be a gallbladder attack, my other doctor said

lets wait to see what happens. Little by little I felt sicker but because I

have no insurance I feel like the concern for you as an individual instead of

a number is limited. As the year progressed towards the end I went to ER 3

times they did ivs told me I had hepatitus call my doctor. So now I have a

more straight forward approach with all my doctors.

gayle

[Guest guest]

,

I HEAR YOU! I saw my primary care on Thursday, she just gave me MORE drugs

to keep me comfortable! She said she couldn't really do anything since I

don't see the GI until the 10th and it is his call....she did say that from

what she understood my liver function numbers were now GOOD....HOW

frustrating! I too have ALL of the symptoms and have for years...or so it

seems! I see my Rheumatologist on Wednesday and then just have to sit at

home and feel like crap until the 10th. My dr. won't even let me go back to

work cuz I have lost 12 lbs since the I got out of the hospital...no wait,

since the 14th, which was the last time I saw her. Anyway, and she told me I

look terrible and don't need to work right now until they figure out what is

going on! HOW FRUSTRATING!! My question is...if my blood count has come

down so far...how come I feel so terrible? AND>...why isn't anyone telling

me anything? I feel for you ...I know what you mean about feeling

frustrated by having the symptoms, learning more and more and then the dr.

can't do anything! I TOO fear that they are taking too long!

Good luck and take care!

[Guest guest]

,

> That is what I am afraid of, that docs say nothing to worry about and then

> will suddenly be so bad off that will need transplant or die. I have so

> many symptoms of liver disease. I suppose they think it is all in my

mind.

I think we all worry about that, but I've begun to conclude that only in

rare cases does someone become suddenly and critically ill. Most of us will

have increasing problems over time, if that's what is going to happen. I

don't know if that's good or bad. Sometimes I wish I could just be very

sick, get a transplant, and be done with it. But I'm not so sure that would

be a happy ending either!

Take care,

Geri

[Guest guest]

Gee Geri,

All this time I thought you had a transplant. No wonder you feel bad

J

>From: " Spang " <spangs@...>

>Reply- onelist

>< onelist>

>Subject: Re: [ ] First Hints of Liver Disease?

>Date: Sun, 31 Oct 1999 02:58:49 -0800

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>

>,

> > That is what I am afraid of, that docs say nothing to worry about and

>then

> > will suddenly be so bad off that will need transplant or die. I have so

> > many symptoms of liver disease. I suppose they think it is all in my

>mind.

>I think we all worry about that, but I've begun to conclude that only in

>rare cases does someone become suddenly and critically ill. Most of us

>will

>have increasing problems over time, if that's what is going to happen. I

>don't know if that's good or bad. Sometimes I wish I could just be very

>sick, get a transplant, and be done with it. But I'm not so sure that

>would

>be a happy ending either!

>Take care,

>Geri

>

>

>

>

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

>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

><< text3.html >>

[Guest guest]

,

I find that we arent told much because they just dont

know. My rheumatologist still says my liver is fine..I

ask her why she thinks that since the biopsy shows

hepatitis, and says well your alt is normal..what?!?!

My all natural doctor is the only one who accepts

there is a problem there and is treating me with milk

thistle and some other natural stuff. he also started

me on Sam-e. but I digress.

Stay tough and keep your ears open for any doctor

around you that might know how and what to do with

your disease and get another opinion if your not happy

with how things are.

Hugs

Jody

--- MONZ18@... wrote:

> ,

>

> I HEAR YOU! I saw my primary care on Thursday, she

> just gave me MORE drugs

> to keep me comfortable! She said she couldn't

> really do anything since I

> don't see the GI until the 10th and it is his

> call....she did say that from

> what she understood my liver function numbers were

> now GOOD....HOW

> frustrating! I too have ALL of the symptoms and

> have for years...or so it

> seems! I see my Rheumatologist on Wednesday and

> then just have to sit at

> home and feel like crap until the 10th. My dr.

> won't even let me go back to

> work cuz I have lost 12 lbs since the I got out of

> the hospital...no wait,

> since the 14th, which was the last time I saw her.

> Anyway, and she told me I

> look terrible and don't need to work right now until

> they figure out what is

> going on! HOW FRUSTRATING!! My question is...if my

> blood count has come

> down so far...how come I feel so terrible?

> AND>...why isn't anyone telling

> me anything? I feel for you ...I know what you

> mean about feeling

> frustrated by having the symptoms, learning more and

> more and then the dr.

> can't do anything! I TOO fear that they are taking

> too long!

>

> Good luck and take care!

>

>

>

>

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

> Please support the American Liver Foundation!

>

> 1.) To subscribe send e-mail to

> -subscribeonelist

> 2.) To UNsubscribe send to

> -unsubscribeonelist

> 3.) Digest e-mail format send to

> -digestonelist

> 4.) Normal e-mail format send to

> -normalonelist

>

<HR>

<html>

>

=====

Jody Compton

Dance like no one is watching. Love like it will never end.

In search of answers..

[Guest guest]

,

<< Gee Geri,

All this time I thought you had a transplant. No wonder you feel bad >>

No! And I hope I never have to have one. I'm very grateful that I've

become quite stabilized from when I was evaluated for a transplant. All of

my problems are caused by Prednisone, as far as I know. Some of them are a

little worrisome, but I'm in comparatively good shape.

Geri