Everyone

November 7, 1999

thanks cathy for your support when were you dx with aih? what symptoms did

you have ? thanks again peggy from mass detoxpj@...

November 7, 1999

what is considered a flareup? elevated enzymes or symptoms or both?

Audra

AIH

November 7, 1999

PEGGY,

NO! NO! NO! IT IS NOT LIKE BEING SHOT!!!!!No wonder you are so scared!

What I said was, It is sort of like a spring loaded " ear piercing gun " They

position it on the spot, and it retrieves the tissue sample so fast, you

HONESTLY DON'T FEEL PAIN I am anxious for you to write back to us and tell

us we are right!!!!ha!ha!

I totally understand where you are in your dread and fear of the unknown.

The anticipation of such a thing isn't very much fun. Be brave, but let the

staff know how you feel, they are suppossed to respond to you concerns.

best of luck

jenny jones

November 7, 1999

Dear Peggy:

I've had AIH for about 5 years now. It took them a year to give me a

positive diagnosis. For about 6 months they called it 'steroid responsive

hepatitis' in my chart. It wasn't until after I had a relapse that I was

positively diagnosed.

My first symptoms were crippling fatigue and nausea. My case is a little

different from most in that I had full blown hepatitis at the onset. I guess

that just 20% of those with AIH start out that way. I also never had

positive ANA or smooth muscle tests until just recently, and even then they

were just slightly elevated.

If you have any other questions, please don't hesitate to ask.

Take care!

Kathy (AIH)

Seattle area

November 7, 1999

>I think my fears

>calmed down considerably when I accepted the fact that I was sick, and

>nothing I could do would change that. Hang in there...

,

Boy, that is so true. It seems that once you accept the illness, you can

work with it to minimize the bad and maximize the good. It's hard to

believe, but so many good things have happened to me because I've been sick.

Things that I would have missed had I been well. Don't get me wrong, I've

had more than my share of bad things happen, but even some of those have

ended up being positive. I rember a Judo instructor who once told me the

secret to life was to work with the force coming at you to redirect it to

where you want to go, rather than trying to stop the force. I watched him

use it against many opponents, but I never thought about it applying to

everything in life until then. Something to think about.

Don

AIH Minneapolis

November 7, 1999

>what is considered a flareup? elevated enzymes or symptoms or both?

Depends on who is doing the considering! <g> I think most consider an

elevation in either as a flare.

Don

AIH Minneapolis

November 7, 1999

Hi Peggy,

I do have AIH. I'd never heard of it before I was diagnosed and there was

no hint that I might have a liver disease until just a month before I had

the biopsy.

I'd noticed that my urine was very dark, almost brown and it was even

staining my underwear. I'd had that problem for months but we were in the

process of a move from Seattle to Las Vegas. Seattle doctors didn't seem

to see significance and didn't even order a urinalysis.

After we moved to Las Vegas, where it was much hotter than I was used to, I

began to think I smelled chemicals in the air and even tasted them in my

mouth. I was convinced it was caused by local air pollution and even

called the EPA to see about having our house checked for gas leaks, radon

gas or carbon monoxide (which don't smell anyhow, but I was convinced there

was something in the air and/or water.)

I was also having increasingly severe fatigue and incredible

insomnia. Couldn't sleep more than an hour at a stretch if that long. I

believed that was caused by the stress I was under at the time since my

husband had just had back surgery and the future was looking pretty scary.

I was itching and it was driving me crazy. No rashes, just itches all over

my body, especially at night. I figured that was caused by the dry Nevada air.

Then, my feet and ankles began to swell. Again,. I thought that was caused

by the heat. But, when my abdomen also began to swell so much I couldn't

sit upright and had to actually lie down to eat (from a tray) because the

pressure was so painful, I thought I should see a doctor. By then, I was

also having heart palpitations, like my heart was skipping a beat. Once

more, I assumed that was stress related and didn't really worry about it.

The first doctor I should have seen didn't bother to see me at

all. Instead he had his PA see me. The guy was sharp, as it turned out,

but that offended me and I didn't go back. However, the PA did do liver

function tests (blood tests) and ordered an ultrasound. When I cancelled

my appointment, he actually sent me a letter telling me to see a

Gastroenterologist. Since I had no GI problems (I thought) I didn't

go. Instead I saw a second doctor who also ordered LFTs and a CT scan.

At that time, I'd never seen one of my own lab test results or I'd have

known that in just 3 weeks my already dangerously high LFTs had

skyrocketed. I didn't get really worried until the technician who did the

CT scan told me that I should call my doctor as soon as I got home and that

she was also going to call him. She wasn't allowed to tell me what she'd

seen, of course, but I knew something was wrong.

Tried to call the doctor and believe it or not, three weeks of playing

phone tag were unsuccessful. He simply didn't return calls and apparently

either didn't read the results of tests he'd ordered or didn't comprehend

their significance.

By then I was getting really sick - mostly edema and fatigue. I found a

new doctor through an ad in the paper (I'd never been " sick " in my life so

figured any doctor would do). I was lucky. The doctor I chose was a woman

who is probably pushing 80 but she knows what she's doing. She had the

labs fax the test results to her after I'd seen her for the first time. I

left her office and almost the minute I stepped in the door at home, I had

a call from her nurse telling me I was to turn around and go to the

hospital, where I was to be admitted.

We have good insurance, fortunately. The woman doctor, who is an

Internist, called in top local specialists including a GI doctor, a

cardiologist, a surgeon and someone else - I don't remember which

specialty. I had several invasive tests the next day, including an ECRP

and a liver biopsy. I was hospitalized for five days.

All of the doctors trooped in to see me after the tests were done. Mainly,

it was a chitchat thing since I was apparently very entertaining under

anesthetic and they seemed to want to carry on the joking and

conversation. However, the GI specialist was not smiling. He told me that

I had Primary Biliary Cirrhosis and announced that I had 2 to 5 years, at

most, to live. He said that I had to be evaluated for a liver transplant

as soon as possible.

Needless to say, I felt like someone had hit me with a sledge hammer. At

the time there were no liver transplant specialists in Las Vegas so I had

to wait until the end of December (this was mid-November) to see a

Hepatologist from Pacific Medical (affiliated with UCSF) who comes to Las

Vegas once a month. During this waiting period, to the GI doctor's

distress, the only meds I was given were diuretics and drugs to alleviate

the nausea and GI pain I was now feeling.

The Hepatologist reviewed all of the labs that had been done (quite a few

by the end of December 1997) and the actual biopsy (I had stage IV

cirrhosis on a scale of I to IV), not just the report. He told me that I

didn't have PBC, I had AIH. Because my insurance didn't cover UCSF, I then

went to Scripps Clinic in La Jolla, California for transplant

evaluation. They confirmed the AIH diagnosis and put me on Prednisone and

Imuran immediately.

After that I went gradually into remission and except for Prednisone side

effects and some other problems that don't seem to be serious, I'm still

okay. Incidentally, I've already used up two of those five years the first

doctor predicted and I don't think I'm anywhere close to signing

off. I've been told that if I can stay in remission, my life expectancy is

now the same as for anyone else. In other words, remission can mean that

life goes on. Just on a different scale.

An AIH diagnosis doesn't have to be the end of the world. It's so

unpredictable, they don't really know who will achieve and maintain

remission, but I'm not going to argue with my good fortune. I happen to be

very responsive to the meds. Not everyone is.

I've been very careful to follow medical instructions and I don't use

alternative drugs and won't unless I have my doctor's approval. If I

weren't doing so well, I might be more open to alternatives, but why rock

the boat? AIH doesn't rule my life but it has changed it. I don't watch

my diet. I was told at the beginning that dieting - which I've never needed

to do in the past, wouldn't help me lose weight because my nutritional

needs are more important than any concerns about weight gains. No special

diet, except in my case, I need close to 3/4 lbs. of protein

daily. Generally, on a good day, I might actually consume 1/8 lb. of

protein, but it hasn't hurt me so far. Some people have to avoid

proteins. This seems to vary from person to person. I think that has

something to do with the amount of ammonia in the system and I don't have

excess ammonia.

From what I've gathered, the " rule " about AIH is that there are

no rules. Every individual seems to follow a slightly different

course. We can't even compare labs, because I never have had elevations

that some others have had.

I guess the most important thing is that you are seeing a Hepatologist at a

major medical center. This isn't a disease to be taken lightly and even

doctors who " think " they know what they're doing don't necessarily

understand it. Most of us have even met doctors who have never heard of

it. You can't afford to be a party to someone's learning curve. A good

medical center can direct your care and dictate the medications you take

and when. Your primary doctor should be willing to listen to an expert and

follow the " plan " . There are established treatment protocols for AIH and

no one should argue with success. Many physicians will follow guidelines

set out by The Mayo Clinic, UCLA, Cleveland, or one of the other major

liver treatment and transplant centers. That's what you need to be certain

is done. More than once my local Hepatologist has been contradicted by

Scripps and has changed his medical plan for me. I'm grateful that he is

willing to listen and defer.

I hope that you will be able to quickly settle in for the " long haul "

because it IS a long haul. Once the shock wears off, you'll begin to feel

more at ease and less frightened. I thought my life was over at

first. Now, I realize that there is life after an AIH diagnosis after all.

Take care,

Geri

November 7, 1999

Geri,

Wow, that was so eloquently written! I'm in awe!

Don

November 7, 1999

Whilst I'm throwing this pity party, could I also express how much I wish I

could let go and give in to the fatigue, etc? Those of you with significant

others, who can wander all night, stay in bed until noon, as horrific as

that is, what if you had no choice but to start preparing for work at 6:00

am, no matter what.

I can see I have a great deal of anger in me. I won't apologize to the

group. I shouldn't need to. Maybe there is one person out there who

understands.

One more time - anyone in Austin?

KayK in Austin, AIH, PBC - also hypertension and hyothyroidism

November 8, 1999

Don,

><< Geri, Wow, that was so eloquently written! I'm in awe! Don >>

What did I say? I want to remember it so I can do it again sometime!

Take care,

Geri

November 8, 1999

hey kayk let that anger out thats what i imagine this group is for also weve

got to take the good and bad , and right now we need to listen to your anger

keep the faith and god bless peggy detoxpj@...

November 8, 1999

Kay,

I know how hard it is to get up every day and go to work... I didn't think

I'd make it today, but then I too had no choice. Sometimes like just sux

huh! One day at a time sweetie, that's all we can do. That's all we all do,

alone or not.

Hugs,

November 8, 1999

Geri,

Sorry, I should have snipped a bit to include... I was impressed with your

description of the first days of your illness. It brought back a lot of

forgotten memories for me. I still get the strange odors that nobody else

can smell.

Don

><< Geri, Wow, that was so eloquently written! I'm in awe! Don >>

What did I say? I want to remember it so I can do it again sometime!

Take care,

Geri

November 8, 1999

Hi KayK,

Go right ahead and vent. Just be careful not to get caught up in the " my

symptoms are worse than yours " syndrome. Most of us are extreme type A

personalities. We've worked through the fatigue like you are. Unfortunately,

some of us have hit the point where it is no longer possible to work, no

matter how much we want to, or have to. Many of us have lost our jobs, filed

bankruptcy, and wondered how we could feed not only ourselves, but our

families. As much as you wish you could give in to the fatigue, I hope you

never reach the point where you have no choice.

That said, it is important for you to find ways to conserve your energy. It

may seem impossible, but it can be done. And must, if you want to continue

to work.

<<<<<hugs>>>>>

Don

AIH Minneapolis

Re: [ ] Everyone

From: " kak " <majuli@...>

Whilst I'm throwing this pity party, could I also express how much I wish I

could let go and give in to the fatigue, etc? Those of you with significant

others, who can wander all night, stay in bed until noon, as horrific as

that is, what if you had no choice but to start preparing for work at 6:00

am, no matter what.

I can see I have a great deal of anger in me. I won't apologize to the

group. I shouldn't need to. Maybe there is one person out there who

understands.

One more time - anyone in Austin?

KayK in Austin, AIH, PBC - also hypertension and hyothyroidism

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

November 8, 1999

If one more person in this group is nice to me I may never stop bawling!

God bless you all. And thank you from the bottom of my heart.

KayK

November 8, 1999

Hi Peggy,

not sure I too am still learning. I still find the new lifestyle difficult to

deal with. And remembering to take all my drugs make me crazy at times. I

wish you well. All you can do is take things slowly.

Gayle

November 8, 1999

Hi ,

the drugs are not so bad if you want to live. The remembering is another

thing.

Gayle

November 9, 1999

Gayle,

Get one of those plastic pill containers that are marked for every day of

the week. My husband and I each have two, one for mornings and one for

nights. Where we get into trouble is when we have to take meds

mid-day. We fill them once a week and we're done with it.

><< remembering to take all my drugs make me crazy at times. I

>wish you well. All you can do is take things slowly.

>Gayle >>

Take care,

Geri

November 9, 1999

Geri:

For my Mom who has medicine two take three times a day, we got an extra

container and wrote afternoon on it for her.

Sue AIH

Wisconsin

November 9, 1999

Don,

Now I have a question for you and for everyone.

I'm okay except for the fact my bones seem to be seeking self

destruction. But I always was a " cerebral " type, so I can live with that.

However, the last two times I've had ultrasounds, the reports have noted

" Markedly enlarged gallbladder with no evidence of intrahepatic duct

dilation. Normal pancreatic head. No gallbladder thickening. Clinical

correlation is required. "

When I first got sick, pre AIH diagnosis, my gallbladder was also grossly

enlarged and eventually it reached the point where bile backed up and

wouldn't pass through the bile ducts, thus hospitalization.

When I had the last ultrasound just a couple of months ago, my Hepatologist

told me that the gallbladder is " always " enlarged when you have an

ultrasound or CT scan after fasting because there is no food to activate

the bile. Well, doesn't everyone have to fast before having an ultrasound

and/or CT scan? And, if that's so, why would the lab bother to remark on

something that, according to my doctor, happens to everyone?

Does anyone have any idea what can cause the gallbladder to become enlarged

without any apparent pathological cause? No doctor has hinted that I could

have a problem with my gallbladder itself, but I do have this damned

infernal pain in my midsection and on my left side, which I still think is

caused by pressure, probably from the enlarged gallbladder on my right

side. Somethings gotta give!

Anyone with similar experiences, I'd appreciate hearing from you. I'm

wondering if I don't need another Hepatologist's opinion. This might mean

going to either Denver or Texas... hassles go on and on, don't they?

Take care,

Geri

November 9, 1999

Geri,

I have had several ultrasounds in gall bladder area. None had report of

enlarged gall bladder.

Susn J

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

>Reply- onelist

> onelist

>Subject: RE: [ ] Everyone

>Date: Tue, 09 Nov 1999 02:09:02 -0800

>MIME-Version: 1.0

>From sentto-165537-8379-shireen42=hotmail.comonelist Tue Nov 9

>02:18:17 1999

>Received: (qmail 11867 invoked by alias); 9 Nov 1999 10:18:05 -0000

>Received: (qmail 11832 invoked from network); 9 Nov 1999 10:18:01 -0000

>Received: from unknown (209.207.164.239) by pop.onelist.com with QMQP; 9

>Nov 1999 10:18:01 -0000

>Received: from unknown (HELO mtiwmhc01.worldnet.att.net) (204.127.131.36)

>by mta1.onelist.com with SMTP; 9 Nov 1999 10:18:10 -0000

>Received: from worldnet ([63.23.75.111]) by mtiwmhc01.worldnet.att.net

>(InterMail v03.02.07.07 118-134) with ESMTP id

><19991109101809.ZYEP26289@worldnet> for < onelist>; Tue,

>9 Nov 1999 10:18:09 +0000

>Message-Id: <4.2.1.19991109020024.00a53960@...>

>X-Sender: spangs@...

>X-Mailer: QUALCOMM Windows Eudora Pro Version 4.2.1

>In-Reply-<000101bf2a26$8bf6e2c0$0100a8c0@...>

>References: <4.2.1.19991108040531.00a4b480@...>

>Mailing-List: list onelist; contact

> -owneronelist

>Delivered-mailing list onelist

>Precedence: bulk

>List-Unsubscribe: <mailto: -unsubscribeONElist>

>

>Don,

>Now I have a question for you and for everyone.

>

>I'm okay except for the fact my bones seem to be seeking self

>destruction. But I always was a " cerebral " type, so I can live with that.

>

>However, the last two times I've had ultrasounds, the reports have noted

> " Markedly enlarged gallbladder with no evidence of intrahepatic duct

>dilation. Normal pancreatic head. No gallbladder thickening. Clinical

>correlation is required. "

>

>When I first got sick, pre AIH diagnosis, my gallbladder was also grossly

>enlarged and eventually it reached the point where bile backed up and

>wouldn't pass through the bile ducts, thus hospitalization.

>

>When I had the last ultrasound just a couple of months ago, my Hepatologist

>told me that the gallbladder is " always " enlarged when you have an

>ultrasound or CT scan after fasting because there is no food to activate

>the bile. Well, doesn't everyone have to fast before having an ultrasound

>and/or CT scan? And, if that's so, why would the lab bother to remark on

>something that, according to my doctor, happens to everyone?

>

>Does anyone have any idea what can cause the gallbladder to become enlarged

>without any apparent pathological cause? No doctor has hinted that I could

>have a problem with my gallbladder itself, but I do have this damned

>infernal pain in my midsection and on my left side, which I still think is

>caused by pressure, probably from the enlarged gallbladder on my right

>side. Somethings gotta give!

>

>Anyone with similar experiences, I'd appreciate hearing from you. I'm

>wondering if I don't need another Hepatologist's opinion. This might mean

>going to either Denver or Texas... hassles go on and on, don't they?

>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 >>

November 9, 1999

Geri I have had 2 ultrasounds and was never told to fast.

Pa.

November 9, 1999

If you dont miss it, does it really have a function. How does the bile get

into the digestive tract?

J

>From: barbara ann <barbara99ann@...>

>Reply- onelist

>liver support < onelist>

>Subject: [ ] re:Everyone

>Date: Tue, 9 Nov 1999 14:25:02 -0800 (PST)

>MIME-Version: 1.0

>From sentto-165537-8419-shireen42 Tue Nov 09 14:26:29 1999

>Received: from [209.207.164.235] by hotmail.com (3.2) with ESMTP id

>MHotMailB9F1EA920021D820F397D1CFA4EB10AF0; Tue Nov 09 14:26:29 1999

>Received: (qmail 18672 invoked by alias); 9 Nov 1999 22:25:04 -0000

>Received: (qmail 18628 invoked from network); 9 Nov 1999 22:25:02 -0000

>Received: from unknown (209.207.164.241) by pop4.onelist.com with QMQP; 9

>Nov 1999 22:25:02 -0000

>Received: from unknown (HELO web1005.mail.) (128.11.23.95) by

>mta2.onelist.com with SMTP; 9 Nov 1999 22:30:40 -0000

>Message-ID: <19991109222502.29746.rocketmail@...>

>Received: from [216.70.88.185] by web1005.mail.; Tue, 09 Nov 1999

>14:25:02 PST

>Mailing-List: list onelist; contact

> -owneronelist

>Delivered-mailing list onelist

>Precedence: bulk

>List-Unsubscribe: <mailto: -unsubscribeONElist>

>

>Hi Geri,

>I can't help, even a tiny bit, with the gall bladder

>mystery. My doctor was hoping to find a stone that

>broke loose and was causing blockage somewhere along

>the line, as the cause of my problems. That would

>have been easier than dealing with a disease. Mine

>was perfectly normal, no stones, normal size, until a

>week before my transplant. One day, during one of my

>regular ultrasounds, they couldn't find my gall

>bladder at all. They tried from every angle and then

>concluded that it collapsed. I was still in denial

>and just said 'Hmm...', went on my way, back to my

>hospital room, without a care in the world. It's

>standard procedure to remove the gall bladder during

>transplant, so regardless of the condition, I would be

>without one anyway. P.S. I don't miss it, and can't

>tell it's gone.

>I'll be watching the posts, I would like to learn more

>about it. I hope you get some answers soon.

>Barbara Ann

>AIH Transplant Recipient

>

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

>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 >>

November 9, 1999

In a message dated 11/9/1999 12:55:44 AM Eastern Standard Time, GALYE@...

writes:

<< the drugs are not so bad if you want to live. The remembering is another

thing. >>

Gayle,

I guess I'm in deep doo-doo, cause I can't remember now, and I'm not on the

meds yet! LOL

November 9, 1999

Hi Geri,

When I've had ultrasounds, my gallbladder wasn't enlarged. Sounds like yours

is enlarged, but for no reason that is evident on the ultrasound. I'm not

familiar enough with gallbladders to give you any advice. Does anyone else

have any ideas?