Re: AIH

[Guest guest]

HI GROUP

I'M 32 MALE WITH AIH, I USUALLY READ THE MAIL AND TALK 2 PEOPLE ON THE SIDE

INSTEAD OFTHE LIVERSUPPORT, I'VE HAD AIH FOR ABOUT 11 YEARS AND ON THE LIVER

TRANSPLANT LIST HERE IN NYC. THESE LAST COUPLE OF DAYS I HAVE NOT HEARD OF

ANYTHING ABOUT ORGAN DONATION SINCE I BELIEVE THIS IS THE WEEK, OR FOR HEP,

I KNOW I HAVE A RIBBON FOR THE OCCASSION WHICH I WEAR.

THIS WEEK I WILL GO FOR MY REGULAR BLOOD WORK,

CBC-LIVERPROFILE-AMONIA-SUGAR-ETC. i'M CURRENTLY ON 5MG PREDISONE AND 50MGS

IMURAN AND LACTULOSE. PS 50PDS OVERWEIGHT.

I CURRENTLY TALK TO A LADY OUT FROM MASS THAT NEED TO TALK TO SOMEONE ABOUT

HER SON, NOW IF ANYONE CAN HELP WITH A TIP LIKE GERI, I KNOW U'RE ALWAYS

AROUND, SURE BE GLAD. HER SON HAS HIGH ALT AND SHE SAID THAT THE BLOOD TEST

FOR HEP OR OTHERS COME OUT NEGATIVE, HE IS ALWAYS TIRED AND HAS JAUNDICE,

SHE HAS GONE TO SEVERAL DIFFERENT DOCTORS ABOUT THIS PROBLEM AND THE SAME

RESULTS, I KNOW FROM EXPERIENCE I WAS TESTED FOR AUTOIMMUNE SEVERAL YEARS

AGO AND IT CAME OUT NEGATIVE. IT LAST YEAR AT NYU HOSPITAL THAT IT CAME OUT

POSITIVE. i TOLD HER I WOULD GET BACK 2 HER, I HAVE INFORMATION FROM

BEFORE ABOUT AUTOIMMUNE THAT I GOT FROM THIS GROUP. SO PLEASE ANY INPUT,

AND KIMBERLEE I FEEL THE SAME. EVERY THING IS GOING GOOD, HAVE A CAR

APARTMENT BUT NO DOG, BUT A BIKE.

AN AS WELL PLEASE TELL ME HOW SOMEONE CAN BE PART OF LIVERSUPPORT SO THAT I

CAN SEND THAT INFORMATION.

LOTS OF LOVE

MIGUEL RIOS

NYC

PS. I WILL ALSO SEND RESULTS OF MY BLOOD WORKS. THANK U AND GOD BLESS

[Guest guest]

,

What a great note you wrote to Jo. Go girl. Let us all live for

today. Find the joy an pleasure in today. We can't change our future. No

one can. Sometimes I need a boost for myself. Your letter to Jo gave

me that boost for today.

Sunshine-

Jan in Ny

[ ] Re: AIH

>From: " .Hutchinson " <brandy.hutchinson@...>

>

>Hello Jo

>

>Well I hope you feel better today!! I'm , and I'm 26 and have had

>aih for three years!!

>

>It's a very frustrating illness, and I'd be lying if I said it's not all

>that bad??!!! Just after I was diagnosed, I went out with some girl

>friends to a bar, and was asked why I was not drinking?? i explained

>sort form, and they said " sucks to be you " !! Now there is a song out

>and the course says " sucks to be you " This has stayed with me because

>it does suck to be me!! and it sucks having this disease!!

>

>But you make the best of what you got!! And I do apprecivcated things

>allot more!! I have the same worries about paying a mortgage off etc..

>Will I buy my first house and then get so sick I can not work to pay for

>it??

>

>Any ways what really bugs me is I am putting money into rsp's and

>probably never be able to uses them??? lol I'm sure I won't live to

>retirement!! Well maybe I will!! I don't know?? know body knows when

>the end is near? but unlike some we have been given a bit of an idea?

>and to tell you the truth I'd rather not know.

>

>My life has changed so much, and all i want is to be a healthy 26 year

>old, awaiting my wedding day and children!! But I'm not sure, I can

>have the wedding , but the children are still (not sure) (would I have

>the energy??)

>

>So that sounds pretty depressing, but look at the bright side, What do I

>have??

>I have a great family

>good friends

>many friends over the net

>I have a good Job (some days??) lol

>I have a great home (the ranch)

>I said before I died I wanted to drive a brand new car ( I am)

>I have two wonderful dogs (when they sleep)

>And great hair!! lol

>

>So life is not all that bad!! If i die tomorrow all die happy!!

>

>

>

>

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[Guest guest]

Hello Jo

Well I hope you feel better today!! I'm , and I'm 26 and have had

aih for three years!!

It's a very frustrating illness, and I'd be lying if I said it's not all

that bad??!!! Just after I was diagnosed, I went out with some girl

friends to a bar, and was asked why I was not drinking?? i explained

sort form, and they said " sucks to be you " !! Now there is a song out

and the course says " sucks to be you " This has stayed with me because

it does suck to be me!! and it sucks having this disease!!

But you make the best of what you got!! And I do apprecivcated things

allot more!! I have the same worries about paying a mortgage off etc..

Will I buy my first house and then get so sick I can not work to pay for

it??

Any ways what really bugs me is I am putting money into rsp's and

probably never be able to uses them??? lol I'm sure I won't live to

retirement!! Well maybe I will!! I don't know?? know body knows when

the end is near? but unlike some we have been given a bit of an idea?

and to tell you the truth I'd rather not know.

My life has changed so much, and all i want is to be a healthy 26 year

old, awaiting my wedding day and children!! But I'm not sure, I can

have the wedding , but the children are still (not sure) (would I have

the energy??)

So that sounds pretty depressing, but look at the bright side, What do I

have??

I have a great family

good friends

many friends over the net

I have a good Job (some days??) lol

I have a great home (the ranch)

I said before I died I wanted to drive a brand new car ( I am)

I have two wonderful dogs (when they sleep)

And great hair!! lol

So life is not all that bad!! If i die tomorrow all die happy!!

[Guest guest]

Jan,

always makes me feel better. She's a very special young woman and

I'll bet that she brightens the lives of all the people around her. (Don't

blush, .)

Geri

[Guest guest]

Gee Ron, Auto-Immune Hepatitis is when your immune system goes haywire and

attacks you liver----how we get it, no one knows---when they figure that out

perhaps they can give us a cure. I'm sure someone else can give you some

elaborate details but that is basically what it is. Joan

[Guest guest]

Ron...

AIH...Auto-immune Hepititis...Your own immune system attacks...like all the

other auto-immune diseases...

Luanne Ty's mom

[Guest guest]

Dear ,

What an ordeal your son and your entire family have been through. I count

my blessings that none of my children were ever seriously ill when they

were very young.

Over the months several parents of young children with autoimmune diseases

have posted here. At least one of them is younger than your son. It's

interesting to notice that the very young children who are diagnosed almost

always seem to be boys though AIH supposedly is predominant in young women.

I suspect that this new " trend " is a result of better diagnostic

procedures and increased awareness in the medical community. Who would

suspect liver disease in a child? Unless symptoms are obvious, like severe

jaundice, I can see how it could be overlooked for awhile. As you may

know, jaundice is not typical in AIH. Some never have it. I never have

though I did have a stoppage of bile flow when I was most sick. That's the

only time my bilirubin count was high.

Also, apparently the conclusion that the disease is AIH and not another

form of hepatitis seems to be more a process of elimination than anything

else. I was given exhaustive tests to rule out any and all other forms of

Hepatitis. They finally concluded that I didn't have and never have had

Hepatitis in any form, yet I had symptoms and labs that are typical for

Hepatitis. One doctor even told me that I'd had Hep C at sometime in my

life, but the transplant center, Scripps in La Jolla, California, did very

sophisticated tests and they told me that this was an error. I've never

had Hep C or B or A or any of the others. Apparently they have pinned me

down to AIH conclusively. Not great news, but at least we know the monster

we have to battle.

Can your son use Retin A for the acne? You might ask about it. It works

quite well. I brought two nephews through adolescence without major acne

problems with the help of Retin A. However, I don't know if there might be

a reason it can't be used with people with liver disease. It's wonderful

stuff if someone will prescribe it for your son. He has enough problems

without undergoing further demoralization from skin problems.

My heart aches for you and for your boy. I hope that your doctors will

settle into a plan that will be successful. They're giving him very high

dosages of medications but he obviously was very, very ill.

Take care,

Geri

[Guest guest]

Geri, I used to take prilosec, but it seemed to be making me lose my hair,

although not on prednisone. Now taking Prevacid and doing fine with it.

J

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

>Reply- onelist

> onelist

>Subject: Re: [ ] AIH

>Date: Sat, 09 Oct 1999 02:07:57 -0700

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>,

><<I too have had normal labs for several months now I am down to 2.5 mg of

>pred. and 100 Imuran I just saw my Dr. and asked if my labs are normal why

>do I feel worse than I did in a long time >>

>

>I keep asking myself the same question. In fact, I'm tempted to ask my

>doctor just what kind of price I'll ultimately pay to avoid a liver

>transplant? If the treatment is worse than the disease, is it worth it?

>

>I went through the too-rapid pred withdrawal too and it's horrible. I was

>put back on it at 10 mgs. and felt great. Better than I'd felt in months.

>But, as I tapered down to 5 mgs., things started going downhill. Now,

>after many months of 5 mgs. (since June) I feel lousy most of the time.

>The thing is, with the development of osteoporosis, undoubtedly caused by

>the Prednisone, I can hardly increase it. They haven't suggested

>increasing Imuran yet though once awhile back I was told that ultimately

>they probably would. To top things off, my insurance company is playing

>games, refusing to authorize meds I need and that have worked. I've taken

>Prilosec for two years and had no GI problems. Now, they say they will only

>authorize Premacid (?) which supposedly the same thing. Coincidentally or

>not, I now have nausea for the first time in 2 years. Yet, my labs are

>fine. Interesting.

>

>As though things weren't miserable enough, I caught flu from my husband and

>woke up very sick this morning. Too sick to keep my appointment for

>fasting glucose and other lab tests, so I'll have them Monday. My doctor

>told me to go to the ER because my symptoms might indicate some problems.

>Since most of us have little if any immune systems, we're especially

>susceptible to pneumonia and other respiratory infections. I couldn't

>bring myself to face sitting in an ER for a couple of hours, so if I get

>worse I'll go in the middle of the night or tomorrow morning. Right now it

>sounds insurmountable.

>

>Sometimes I think we're just delaying the inevitable with these drugs we're

>given. You get tired of being tired, don't you? And so weary of aching

>all over. That's besides the ongoing worry about whether the way we feel

>is just part of the program or indication of something serious starting.

>

>Hope you aren't feeling like I am tonight!

>

>Take care,

>Geri

>

>

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