Heidi

[Guest guest]

Welcome Heidi

We always hate it when a new member comes here because it means another

person is having problems that are sometimes hard to get answers too...BUT on

the other hand we LOVE it that you have found us and all the help you will be

able to find here...medically and mentally...

There are many members in many different stages of this disease....some very

new, some here for a long time....some suffering ...some doing really well

and then we are fortunate to also have some who have had a transplant and can

add alot to the conversations....We have patients themselves....spouses of

patients....children who are here to help their parents...and parents here to

help their children....

And that is who I am.....Luanne, a mom of a just turned 18 yr old.....who has

been here for 2 yrs....learning...learning...listening....and every once in

awhile can help someone....

We do a lot of sharing here....So WELCOME to our group....and ask all the

questions you have and someone will come up with the answers and support you

need...

It is great that you have so much support....that is much needed...How old

are you children....I also have 3....but they really aren't children any

more....My daughter is 25...my son is 22 and the youngest just turned 18 on

Thur....He has some other auto-immune diseases...and he was just put back on

pred along with his other meds....He has been sick since he was 9...

It is nice that you have a mom who is an RN.....Had she ever heard of AIH

before you were diagnosed....it seems that so many docs and nurses and

hosp...have never heard of these things and have no idea how to

treat....Having her being a RN means that others will learn about it thru

her....and that is a positive thing....it is hard when you have to explain

what is wrong with you when you have to go to ER or new doctors....

Well Again Welcome....

Hope you find what you need here...

Luannne Ty's mom

[Guest guest]

Good Morning Heidi,

Please lower your caps, Caps is considered shouting online. Sorry...

and Thank you for your cooperation.

Love ya'll, have a great day, remember to laugh all day. Laughter is music to

the heart and very healing. Soooooo, laugh a lot, love a lot, and be healthy,

especially love a lot, the more love you give the more you get in return.....

Joan, List Moderator

Florida

AIH, 1 Gall Stone, HBP

Fox

<A HREF= " aol://1722:http://www.foxdianasden.com " >Fox 's Den</A>

<A HREF= " http://www.foxdianasden.com " >http://www.foxdianasden.com</A>

Foxy's Health

<A HREF= " http://www.foxdianasden.com/health.com " >Foxy's Health</A>

<A HREF= " http://www.foxdianasden.com/health.com " >

http://www.foxdianasden.com/health.htm</A>

Liver Support

<A HREF= " http://www.foxdianasden.com/liver support.htm " >Liver Support</A>

<A HREF= " http://www.foxdianasden.com/liver support.htm " >

http://www.foxdianasden.com/liver support.htm</A>

[Guest guest]

LUANNE

I HAVE TWO BOYS AGES EIGHT AND NINE AND ONE GIRL FIFTEEN>>> BUT SHE

SEEMS TO THINK SHE IS THIRTY.

YES>>>I KNOW WHAT YOU MEAN ABOUT NOBODY KNOWS WHAT AIH IS. MY MOM HAD

NEVER HEARD OF IT AND NEITHER DID MY FAMILY DR. I ALSO HAVE THALASEMMIA

AND THEY REALLY DONT HAVE ANY IDEA WHERE THAT CAME FROMM I HAVE NO GREEK

IN MY FAMILY. WE TEASE MY 91 YR OLD GRANDMOTHER AND TELL HER IT MUST

HAVE BEEN THE MILK MAN.

AT THE MOMENT MY LFT " S ARE COMIN DOWN ON 60 mgs PRED. I HATE THAT STUFF

SO MUCH. MT ALT IS 712 WAS1038 LAST SUNDAY. AND MY AST WAS 760 NOW IT IS

365. FOR SOME REASON THIS TIME THE PRED. HAS MADE MY HEARING REALLY BAD

IN ONE EAR.

I WENT TO SCHOOL TO BE A CERTIFIED PHLEBOTOMIST AND I LOVED IN .

FINISHED IN 98 IT WAS A THREE MONTH COURSE AND NOW EVERYBODY IS

AGAINST ME LOOKING FOR THAT TYPE OF WORK.

I REALLY ENJOY IT IF NOTHING ELSE I CAN AT LEAST READ MY OWN LABS AND

KNOW WHEN SOMETHING IS NOT RIGHT. I HAD A LIVER BIOPSY IN 99 WHEN I HAD

THE FIRST FLARE UP AND I HAVE NEVER HAD ANYTHING SO PAINFUL IN ALL MY

LIFE. WHEN HE WAS DONE HE HELD IT UP IN FRONT OF ME AND SAID >>> DO YOU

WANT TO SEE IT ? LETS JUST SAY I W AS NOT A HAPPY CAMPER. I HAVE A NEW

GI DR. NOW AND I REALLY LIKE HIM. AND I HAVE BEEN TO PITTSBURGH ALSO .

WELL I HAVE TIED YOU UP LONG ENOUGH THANK YOU FOR LETTING ME VENT I

REALLY NEED TO SOME TIMES>>>>>>>>>>

HEIDI

[Guest guest]

Hunt is 19 and a freshman in college. How long did you stay on the 60mgs

before you lowered yourself? Did the 60mgs help to bring your labs down? If

you wanna know more about Hunt's levels , read my post to aumesh.

How old are you and how long have you been diagnosed. Hunt has never been on

this high a dosage. Did you face break out worse? Sorry about all teh

questions but you know how it is.

God Bless You

Rosemary

[Guest guest]

ROSEMARY

Hello. thank you for your responce. I am 36 yrs old.my labs are getting

better slowly my ast is 220 and my alt is 464 as of yesterday. my lips

are really swollen from the pred. and when i gropped it 20mgs two days

ago dont see much diffrence in my nerves. i still get night sweats and

hot flashes. i tell everyone that menopause will be a breeze. bin there

done that.

my face has not had any breakouts i think that is the only thing that

hasent happened.

my mom is an RN . and sometimes i dont know how people can do this

without a little medical backround. i went to phlebotomy school and if

i didnt get anything else out of it al least i can read my oun labs. i

can imagine it is hard on hunt i could never attend school and go

through a flre up at the same time i have three great kids and a

supportive husband and dont know what i would do without them. thank you

for your e-mail . dont mind the spelling and typeossss its hard to type

with the pred. shakes look forward to hearing from you again

heidi

[Guest guest]

Heidi, you may know more about this stuff than I do but aren't you suppose to

lower prednisone slowly? The hepatologist decreases Jodi's 5 mg. at a time.

I just worry about you doing this on your own. Take care and God bless.

Genny/Jodi's Mom

[Guest guest]

genny

i was never on this high of a dose before and i have labs done every

week so i do keep a close eye on it> THE RINGING IN MY EARS WAS AWFUL. I

JUST THINK 60mgs is to much for my body to handle dont worry i watch

closly

thanks

heidi

[Guest guest]

Just worried for you, not trying to be a know it all. My mother has ITP and

she was on 80 mg when she was first diagnosed. Her Oncologist decreased the

dosage until she was completely off then her platelets came way down again.

Now she is taking 40 mg. makes her very hyper and she only weighs about 90

pounds soaking wet. We were hoping she would gain weight on the Prednisone

but it works the opposite on her. Take care and hope you feel better soon.

Genny/Jodi's Mom

[Guest guest]

genny

nice to hear from you. i normally weigh about 120 but with pred i went

to 160. that is hard when you never had to watch your weight. i know

what you mean about not being able to sit still. sometimes i feel like i

can take on the world and then my body says " maybe tomorrow " .when i

was diagnosed i quit my job it was way to physical and now i feel like a

bum. i loved working . it gives me a feeling of independance. i applied

for disabiliyt but really dont think i will qualify. most of the drs

never heard of aih so who knows time will tell. today i feel pretty good

might do something outsidee and get some fresh air. i am in PA where are

you from. how old is you daughter? thanks for keeping in touch and

caring.

heidi

[Guest guest]

Hi Heidi, glad you are feeling pretty good today. I know it is a one day at

a time illness. My daughter (Jodi) is 27 years old and has a son that is 2

1/2. She was diagnosed with AIH in Feb. and was told she has cirrhosis in

April. She works for a children's dentist and is still working full time.

After being in the hospital the first time the doctor moved her to the front

desk. She was in the hospital the second time in March with an infection.

When she started on her meds and was given the OK by her Hepatologist in

Miami she begged her boss to put her in the back again because she likes the

hands on work with the kids. At first we were going to Miami every 6 weeks.

We live in Central Florida so that is a four hour drive for us. He then

changed her appointments to nine weeks. She has been doing well so now it's

every 3 months. I should say doing well up till about 2 weeks ago when her

LFT'S went crazy. She had bronchitis so her Gastro doctor who is here in

Haines City thought that may be the reason. But no it couldn't be as easy as

that, she has had labs done three times since then and they seem to get worse

each time. Her platelets dropped 13,000 in four days. Now we are waiting to

go back down to Miami to see what the Hepatologist wants to do. Her Gastro

called him and he said he wants to do more test when she gets down there.

Will know more after Nov. 20, thanks so much for asking.........Is it cold in

PA? We have had very nice weather the last couple of weeks. I too got out

today and worked in the yard. We need rain though, very dry. Hope the fires

don't start up again, have had a dry summer.......Better clear out the mail,

so will talk to you later. Take care and God bless. Genny/Jodi's Mom

[Guest guest]

HAHAHAHAHAHAHAHAHA....LOL :^O

> Heidi,

>

> Did you send me porn?

>

> Shireen

>

>

> >From: snoober1@W...

> >Reply- egroups

> > egroups

> >Subject: Re: [ ] Heidi

> >Date: Sun, 22 Oct 2000 06:47:27 -0400 (EDT)

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> >From sentto-165537-24315-972211651-shireen42 Sun Oct 22 03:47:59

2000

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> >In-Reply-Babycolt98102690@a...'s message of Sat, 21 Oct 2000

> >19:00:54 EDT

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> >

> >genny

> >nice to hear from you. i normally weigh about 120 but with pred i

went

> >to 160. that is hard when you never had to watch your weight. i

know

> >what you mean about not being able to sit still. sometimes i feel

like i

> >can take on the world and then my body says " maybe

tomorrow " .when i

> >was diagnosed i quit my job it was way to physical and now i feel

like a

> >bum. i loved working . it gives me a feeling of independance. i

applied

> >for disabiliyt but really dont think i will qualify. most of the

drs

> >never heard of aih so who knows time will tell. today i feel

pretty good

> >might do something outsidee and get some fresh air. i am in PA

where are

> >you from. how old is you daughter? thanks for keeping in touch and

> >caring.

> > heidi

> >

>

>

______________________________________________________________________

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[Guest guest]

Heidi,

It is not funny.

Shireen

>From: bluupoint@...

>Reply- egroups

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>Subject: [ ] Re: Heidi

>Date: Mon, 23 Oct 2000 00:55:23 -0000

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>

>HAHAHAHAHAHAHAHAHA....LOL :^O

>

>

>

>

> > Heidi,

> >

> > Did you send me porn?

> >

> > Shireen

> >

> >

> > >From: snoober1@W...

> > >Reply- egroups

> > > egroups

> > >Subject: Re: [ ] Heidi

> > >Date: Sun, 22 Oct 2000 06:47:27 -0400 (EDT)

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> > >From sentto-165537-24315-972211651-shireen42 Sun Oct 22 03:47:59

>2000

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> > >19:00:54 EDT

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> > >

> > >genny

> > >nice to hear from you. i normally weigh about 120 but with pred i

>went

> > >to 160. that is hard when you never had to watch your weight. i

>know

> > >what you mean about not being able to sit still. sometimes i feel

>like i

> > >can take on the world and then my body says " maybe

>tomorrow " .when i

> > >was diagnosed i quit my job it was way to physical and now i feel

>like a

> > >bum. i loved working . it gives me a feeling of independance. i

>applied

> > >for disabiliyt but really dont think i will qualify. most of the

>drs

> > >never heard of aih so who knows time will tell. today i feel

>pretty good

> > >might do something outsidee and get some fresh air. i am in PA

>where are

> > >you from. how old is you daughter? thanks for keeping in touch and

> > >caring.

> > > heidi

> > >

> >

> >

>______________________________________________________________________

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[Guest guest]

no i dont even know how to type let alone find something like that. i

dont know who did

heidi

[Guest guest]

Heidi

Sorry hit the send button a little early...hadn't written anything....Too

many things on my mind....

Just wanted to check in to see how you are doing....are you still looking for

a job as a phlebotomist.....Exactly where in NJ are you...if you said already

then I have forgotten....nothing new for me....

Ty loves Philly and hopes to liver there in the future...live just out side

the city but work there...hopefully at CHOP....that is his dream.....

Well just wanted to get some of my mail out early...On the way to see my

mom...in the Rehab...usual busy day....Talk again soon I hope...

Luanne Ty's mom

[Guest guest]

Luanne

Hello i an not from NJ I am from PA. At the moment I am not working

or looking I am just trying to get this last flare up under control.

Thanks for keeping in touch.

heidi

[Guest guest]

In a message dated 10/23/2000 7:35:24 PM Eastern Daylight Time,

shireen42@... writes:

<< Someone named Heidi sent some porn email to me. I did not open it. You

are

the only Heidi I know. >>

Shireen, I get more porn mail then I care to talk about that I don't want. I

just delete it.....I don't think our Heidi sent it.

Love ya'll, have a great day, remember to laugh all day. Laughter is music to

the heart and very healing. Soooooo, laugh a lot, love a lot, and be healthy,

especially love a lot, the more love you give the more you get in return.....

Joan, List Moderator

Florida

AIH, 1 Gall Stone, HBP

Fox

<A HREF= " aol://1722:http://www.foxdianasden.com " >Fox 's Den</A> (aol

only)

<A HREF= " http://www.foxdianasden.com " >http://www.foxdianasden.com</A>

Foxy's Health

<A HREF= " http://www.foxdianasden.com/health.com " >Foxy's Health</A> (aol only)

<A HREF= " http://www.foxdianasden.com/health.com " >

http://www.foxdianasden.com/health.htm</A>

Liver Support

<A HREF= " http://www.foxdianasden.com/liver support.htm " >Liver Support</A>

(aol only)

<A HREF= " http://www.foxdianasden.com/liver support.htm " >

http://www.foxdianasden.com/liver support.htm</A>

[Guest guest]

Someone named Heidi sent some porn email to me. I did not open it. You are

the only Heidi I know.

Shireen

>From: snoober1@...

>Reply- egroups

> egroups

>Subject: Re: [ ] Re: Heidi

>Date: Mon, 23 Oct 2000 05:36:09 -0400 (EDT)

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>no i dont even know how to type let alone find something like that. i

>dont know who did

> heidi

>

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[Guest guest]

IT WAS NOT ME. SO I DONT WANT TO HEAR ABOUT IT ANYMORE

!!!!!!!!!!!!!!!!!!

HEIDI

[Guest guest]

Hello Heidi, I sometimes get duplicates of post but not triples. I just

delete and go on. Maybe Joan can help you. Take care and God bless.

Genny/Jodi's Mom

[Guest guest]

Hi Heidi, sorry people act this way but I guess it's because they don't know

about AIH. I have never had a bad tooth ache but see people who do every

day........Hope you are having a good week end. Genny/Jodi's Mom

[Guest guest]

JOAN

THANK YOU FOR YOUR QUICK REPLY IT MAKES ME FEEL BETTER . THIS STUFF HAS TO BE

HARD ON YOUR HEART.

HEIDI

> egroups

>From: Mike Claffey <mclaffey@...>

>Date: Fri, 03 Nov 2000 13:03:19 -0400

>Reply- egroups

>Subject: [ ] Heidi

>

>Hi

>I have been off Pred. since before the summer and have done fine, but

>while on them I also had just what you describe. I remember shaking so

>bad at a Christmas breakfast I had to ask my then

>5 y/o to help me carry food to the table. I dropped and spilled

>everything. With each reduction I did feel better but not until after

>the first week or so of the reduction. I always felt like I was having

>a relapse but it was just a withdrawal.

>It did get better for me but it took a very long time to start to feel

>better. I hope this helps.

>Joan Claffey

>NJ

>

>

>

[Guest guest]

I was only weaned off one time but I do have the shakes all the time somedays

worse than others. They may need to check your blood sugar, could be high

could be low!!! Mine was always low and I needed to eat does it go away when

you eat? Is it worse in the morning? etc.... I was diagnosed with a

mitral valve prolapse after treatment for AIH(prednisone and Imuran) So that

could also be a possibility, or it could just be a reaction to being lowered

are you tapering slowly or maybe to quickly? Just some thoughts.

AMY

[Guest guest]

Rhea

He is at the Falk Clinic at UPMC. His name is DR. Vargas and ha is very nice.He

works in the transplant institute but dont let that scaare you I have not had a

transplant he just specializes in livers I really think you would like him. You

may e-mail me directly if you have any other questions> koolmom@.... I hope

this helps.

Heidi

> " egroups " < egroups>

>From: " Rhea S. Klenovich " <rhea@...>

>Date: Mon, 06 Nov 2000 00:41:19 -0500

>Reply- egroups

>Subject: [ ] Heidi

>

>Heidi,

> I live north of Pittsburgh and am looking for a docor to do and get

>a second opinion. Would you mind telling me the name of your Pittsburgh

>doctor? Is he a liver specialist? Thank you!!

> Rhea - PA

>

>Barbara

>I had a liver biopsy and i will not lie to you it was not fun. But i

>have also talkes to alot of others from this group and they said they

>had no problem. At the time that I had it I was very sick. I had already

>been in the hospital for about 5 days. And i was in isolation because my

>white count was in the danger zone. I do not go to the gastro that did

>my biopsy anymore because he treated me like I had a cold. I would go

>for check-up and he would not even lay a hand on me. The DR. that I go

>to now is great he really cares and if I run into big problems I have a

>DR. in Pittsburgh that I go to.If you havr any more questions feel free

>to ask.

>

>P.S. the biopsy only takes about 30 seconds.

> Heidi

>

>

>

>

[Guest guest]

I have had a bone density test. It is a piece of cake. You just lie on a

table while the machine above you slowly scans your body. You don't have to

remove any clothing and it takes about 20-30 minutes, There is absolutley no

pain involved!!

Tracie

[Guest guest]

ADRDEY

i also have gone to falk clinic. i saw dr.

vargas but he has left i live in altoona

heidi

--- Audrey <aab1@...> wrote:

> Heidi,

>

> I live about 50 miles south of Pittsburgh, near

> Uniontown. I doctor at

> the Liver Transplant Center at Falk Clinic,

> UPMC. What part of Pa. are

> you from?

>

> Audrey from Pa.

>

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