RE: labwork

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Jody Compton

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

In search of answers..

October 23, 1999

I read on one of the websites for autoimmune

cholangitis that the ggt also called ggtp and alk phos

were indicators for biliary inflammation. But I don't

think that it is JUST biliary indicators..Ive

mentioned that to my GI doc and he said I was

right..isnt itfunny that they wont explain this stuff

to us..its like if we learn this from them we might

take business away from them???? I will never

understand that.

Jody

--- Geri Spang <spangs@...> wrote:

> Jody,

> <<From: Jody Compton Subject: Re: LABWORK

> from what Ive read..alk phos and ggt represent the

> biliary system of the liver. those are the ones

> which

> are always elevated on my reports.

> Jody >>

>

> Isn't GGT the same as GGTP? Not sure because

> different labs show different

> terminology sometimes. anyhow, to my knowledge, my

> bile ducts are okay, yet

> my GGTP is always elevated. I assumed that this

> just indicated liver

> damage, but maybe not? I do lose track of what

> these things mean since

> there is such a broad range in values, depending on

> which type of liver

> disease or even which type of AIH we have. Alk P

> I've never understood.

> My brother, however, who had pancreatic cancer, had

> elevated Alk P for a

> long time before his disease was diagnosed and when

> the VA was claiming

> that he had a " minor " ulcer. I thought that Alk P

> indicated inflammation?

> I need a cheat sheet.

> Take care,

> Geri

>

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Jody Compton

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

In search of answers..

October 23, 1999

GAYLE,

THANKS! So did your blood work fall within normal ranges too? The dr.

called me and said his nurse would call me on Monday or Tuesday to tell me

when to come in to discuss my options...at this point, I think I am going to

ask for a second opinion.

Why did you go to ER so many times? I HATE ER! IT is like I would rather

sit at home and suffer cuz I REALLY HATE HOSPITALS!

Thanks!

October 23, 1999

Hi monica

I have had aih for 3 and a half years now, when I got sick i was yellow

and a biopsy was the only way they were able to diagnose it.

My numbers were in the 900's etc. at the time.

All those drugs will cause stress on your liver and rise your liver

function test, i was also instructed not to take anything not ok buy

doctor.

I'm on icq under hutchee u can down loaded www.icq.com

and alos on pager as hutchee

I'd love to chat that way, it's much easier!!

October 24, 1999

Here is a good site for helping to understand our lab tests!!!

<A HREF= " http://www.ariess.com/s-crina/tests-menu.htm " >Click here: Blood and

Other Tests Menu</A>

(AIH)

October 24, 1999

,

Thanks for the site for lab work info its great!!

Cheryl and Randy

West Virginia

October 24, 1999

Hi Jody,

My " liver " doctors don't explain much of anything to me. Everything I've

learned about AIH and autoimmune diseases in general I've learned through

Internet research and this group. My new doctor, an Internist, is great

about sharing knowledge. He never tries to rush me through my questions

and gives full, clear explanations. He seems to have an excellent

understanding of the entire process and it's not even his area of medical

specialty. Best of all, he doesn't hesitate to say he doesn't know

something but he will refer me to someone who does. These (rare) types of

physicians are the ones who will keep us alive and maybe even well.

I wish I had a better understanding of the various lab values but it seems

that there is no consistency, so what is true for one of us may not apply

to another. I find that when I get my labs back, I simply looks for the

highs and lows and if they stay basically the same month after month, I

must be doing okay.

Take care,

Geri

October 25, 1999

,

I also had to have a lung biopsy. They found a shadow on my lung on three

different consecutive X-rays. I agreed to a biopsy which was inconclusive

because of too much blood in the sample, there was a partial collapse of my

lung (more painful than the biopsy!) and wouldn't you know? Next two times

I had X-rays, the spot was gone. Now, just a few months later, I'm supposed

to have another lung X-ray. ly, I didn't worry too much about the

possibility of cancer. Maybe I'm too unconcerned about these possibilities,

because 's Law says that if anything can go wrong it will. I wonder

if there's something about our autoimmune condition that can cause these

spots to come and go?

I also was originally diagnosed with PBC and the doctor didn't waste any

words when he told me I had 2 to 5 years to lived. But, he was wrong about

the PBC. It was AIH. And, it's been 2 years ago since this happened and

I'm still here. I even went though transplant evaluation and then this

wonderful remission happened. I've never felt so lousy as a result of

getting better in my life!

You're right. It's a real emotional roller coaster. I went through the

stage of giving things away, saying my goodbyes, expecting to die, lying

alone in bed, too sick to get up, crying bcause I didn't want it to end so

soon. What a difference a year can make! Now I worry that I'll be around

20 years from now and I never wanted to get THAT old!

Take care,

Geri

October 25, 1999

Geri,

Have you seen this site? <A

HREF= " http://members.aol.com/_ht_a/chiaungo/profes/index.html " >Click here:

Dr. Wu's liver diseases (Hepatitis, ...)</A> Read about the clinical

features of chronic hep, It seems to me from reading this that maybe you are

not in remission after all. Maybe that would explain why you feel so bad?

(AIH)

October 26, 1999

Hi ,

I'm definitely going to check out the site you mention, but without seeing

it, is it suggested that even with relatively normal labs, a person can

still have progressing liver deterioration? I think I read somewhere that

in time, even with apparent remission, there is going to be degeneration

and that if we live long enough (what a morbid way to put it) we will have

to have a transplant. The disease simply never goes away, it only advances

at a slower pace for some, but it always keeps on going. My little secret

opinion? They're hoping that they can keep me stable until I'm too old for

transplant and after that, well, my " time " is near anyhow. That probably

isn't reality at all, but when you think about it, if I were 30 it would be

very important to keep me going for another 30-40 years. I'm 64. They can

probably keep me posting for another 6-8 years and even another 10

years. Longer than that won't matter. I'll be too old for a transplant

anyhow. Of course, my grandparents lived into their late 80's and I was

kind of hoping for something similar. ly, I keep wishing I had guts

enough to push the limits. To find out if I'm either okay or not, but to

give up this ongoing battle with the effects of the meds. I'd like to have

nerve to stop taking the medication and live my life with a semblance of

normalcy. If stopping meds didn't work, then let them put me back on the

transplant list - or not.

Anyhow, this isn't something I should be talking about at this time of

day. I'm not at my peak, believe me.

I'll check the website for sure!

Take care,

Geri

October 26, 1999

,

I can't locate you on ICQ....I tried. My icq name is Hoochie and my # is

45684590...so try to locate me if you get on.....I would like to chat

also...especially since I am going to the dr. on Thursday.

Thanks!

October 26, 1999

Geri,

Yes, Dr. Wu's site did indicate that, here is an excerpt: " Normal value does

not mean the hepatitis is inactive, and the degree of elevation dose not

indicate the severity of chronic hepatitis. "

And I don't believe for a minute that they are trying to " wait out " your

disease because of your age! I don't think you really do either, just goes

to show that we are not morning people!!!

So where are you going? We'll miss you! Also, in order to request to be put

on e-mail form, just scroll down to the bottom of this letter and it will

tell you what to do. I went to the onelist site and changed mine. I tried

the digest form for a few days, but hated it! Never felt I got all of the

messages, and it was easier to just answer individual e-mails.

Have a nice trip sweetie!

(AIH)

October 26, 1999

excellent site thanks

Jody

--- La7de@... wrote:

> Here is a good site for helping to understand our

> lab tests!!!

> <A

>

HREF= " http://www.ariess.com/s-crina/tests-menu.htm " >Click

> here: Blood and

> Other Tests Menu</A>

>

> (AIH)

>

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Jody Compton

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

In search of answers..

October 28, 1999

Hi ,

All kinds of paranoid thoughts go through my head when I'm feeling

lousy. Fortunately, I don't often feel THAT lousy.

I don't know what to think sometimes. I'd just like to feel really normal

for a little while. But I know in my heart that it's never going to be

that way. Time for an attitude adjustment. Gotta come to terms with the

idea that this is the new " normal " !

We drove 9 hours roundtrip from Las Vegas to Palm Springs to visit my

husband's 89 year old Dad so he could give his sonny boy a bicycle. (Don't

ask!) On the plus side, we stayed in a historic old hacienda that's known

days of greater glory. On the minus side, my hip and leg hurt worse than

ever, probably due to riding in the car. Also had something that felt

suspiciously like stomach flu and I'll bet it was because of the flu shot I

had Monday afternoon. Anyone know if flu shots are causing those kinds of

symptoms? The worst was over in a couple of hours but I certainly became

well acquainted with my in-laws bathroom. Still feeling a little shaky

today but better.

It was a good trip. Stumbled on a charity rummage type sale of clothes

from the " rich and famous " . Lots of furs (just what anyone needs in either

Las Vegas or Palm Springs, if I'd wear one in the first

place. Not.) Bought a couple of new jackets with labels still on them for

$20.00 apiece but it was a dumb purchase because I don't really need or

want any new jackets. Oh well.

Everything is all fixed. I'm no longer in Digest form. Problem is I

probably over-requested, since I requested that I go ONTO " Normal " and OFF

" Digest " . One probably cancelled the other but Joan fixed it for me, I

suspect.

Take care,

Geri

October 28, 1999

Hi Jody,

Photos are a great idea. My problem is I don't have any that are recent

and my scanner results are not good for color photos, IMO. All I have are

photos from a few years back. I've been camera shy since I started putting

on the lbs.

I have noticed that it's not possible to send attachments to anything sent

from Digest nor does it seem to be possible to open an attachment if you're

receiving Digest form. Frustrating.

Take care,

Geri

October 29, 1999

I have a pic on another website. I will see if they

can send it to me. Its old too. About 4 years or maybe

less. I have gained some weight since it was taken

towards the beginning of my illness. I will pass it

along to do with as the list decides. I do want to be

part of the page

Jody

--- Geri Spang <spangs@...> wrote:

> Hi Jody,

> Photos are a great idea. My problem is I don't have

> any that are recent

> and my scanner results are not good for color

> photos, IMO. All I have are

> photos from a few years back. I've been camera shy

> since I started putting

> on the lbs.

>

> I have noticed that it's not possible to send

> attachments to anything sent

> from Digest nor does it seem to be possible to open

> an attachment if you're

> receiving Digest form. Frustrating.

> Take care,

> Geri

>

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> Please support the American Liver Foundation!

>

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Jody Compton

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

In search of answers..

October 29, 1999

Geri I know its very common to feel some of the

effects of the flu virus given in the vaccines. Ive

heard that a number of times from patients Ive given

the shot to. I too have had side effects from the

shots. fever, achiness etc. Its supposed to be a lot

less than getting the full-on flu..

Jody

--- Geri Spang <spangs@...> wrote:

> Hi ,

> All kinds of paranoid thoughts go through my head

> when I'm feeling

> lousy. Fortunately, I don't often feel THAT lousy.

>

> I don't know what to think sometimes. I'd just like

> to feel really normal

> for a little while. But I know in my heart that

> it's never going to be

> that way. Time for an attitude adjustment. Gotta

> come to terms with the

> idea that this is the new " normal " !

>

> We drove 9 hours roundtrip from Las Vegas to Palm

> Springs to visit my

> husband's 89 year old Dad so he could give his sonny

> boy a bicycle. (Don't

> ask!) On the plus side, we stayed in a historic old

> hacienda that's known

> days of greater glory. On the minus side, my hip

> and leg hurt worse than

> ever, probably due to riding in the car. Also had

> something that felt

> suspiciously like stomach flu and I'll bet it was

> because of the flu shot I

> had Monday afternoon. Anyone know if flu shots are

> causing those kinds of

> symptoms? The worst was over in a couple of hours

> but I certainly became

> well acquainted with my in-laws bathroom. Still

> feeling a little shaky

> today but better.

>

> It was a good trip. Stumbled on a charity rummage

> type sale of clothes

> from the " rich and famous " . Lots of furs (just what

> anyone needs in either

> Las Vegas or Palm Springs, if I'd wear one in the

> first

> place. Not.) Bought a couple of new jackets with

> labels still on them for

> $20.00 apiece but it was a dumb purchase because I

> don't really need or

> want any new jackets. Oh well.

>

> Everything is all fixed. I'm no longer in Digest

> form. Problem is I

> probably over-requested, since I requested that I go

> ONTO " Normal " and OFF

> " Digest " . One probably cancelled the other but

> Joan fixed it for me, I

> suspect.

>

> Take care,

> Geri

>

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> Please support the American Liver Foundation!

>

> 1.) To subscribe send e-mail to

> 2.) To UNsubscribe send to

> 3.) Digest e-mail format send to

> 4.) Normal e-mail format send to

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>

=====

Jody Compton

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

In search of answers..

October 31, 1999

Jody,

Do you know if the side effects of flu shots are GI or respiratory? My

problem was totally GI. Stomach cramps and diarrhea. Very unusual for me

but it only lasted for a day and a half. Since I'm okay now, I'm fairly

certain it was the flu shot that caused it, but I'm curious more than

anything.

Thanks,

Geri

October 31, 1999

Dear Geri:

Sounds more like you might have had some food poisoning or a bout of stomach

flu.

Hope you're feeling better now!

Kathy (AIH)

Seattle area

October 31, 1999

I get feverish and achey. I dont recall if I felt

tummy troubles. I havent had a flu shot in years. Im

afraid of them at this point..

Some people Ive haerd complain of nausea but mostly

the achey stuff..usually lasts a day and then its

done.

Jody

--- Spang <spangs@...> wrote:

> Jody,

> Do you know if the side effects of flu shots are GI

> or respiratory? My

> problem was totally GI. Stomach cramps and

> diarrhea. Very unusual for me

> but it only lasted for a day and a half. Since I'm

> okay now, I'm fairly

> certain it was the flu shot that caused it, but I'm

> curious more than

> anything.

> Thanks,

> Geri

>

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