New member

[Guest guest]

Hello Charlene:

Welcome to the group. How awful for you that the disease has returned after

transplant. I was told that it is very rare for that to happen. How are you

feeling now? Do you have to go back on medication, or were you on medication

since transplant? Sorry for all the questions. I hope that you are able to

get the proper treatment to keep the illness in check so that it will not

badly damage your new liver.

Kathy (AIH)

Seattle area

[Guest guest]

Hi Charlene,

I'm a new member also. I have also been diagnosed with autoimmune hepatitis.

I'm glad I found this web site, maybe now I won't feel so alone.

[Guest guest]

HI: Welcome to the group. If you need answers this is the place. Everyone

is great and have an answer for anything you need. If we can't help, we will

help you find the answer.

Sue AIH

Wisconsin

[Guest guest]

Thanks! I was diagnosed with having mild chronic autoimmune hepatitis last

September.

I'm 41 years old and very scared. I'm seeing a liver specialist at the

University of Pennsylvania. I'm currently taking Prednisone and my labs are

good, I go back in June and then she'll decide if she's going to wean me off

the prednisone. She tried last month but my levels went back up, so we'll see

what happens. If she does wean me she'll put me on Imuran with the

prednisone, does that sound normal??

Thanks for writing, your the first person I've been able to talk to about

this to and not feel strange. Most people think it's contagious or something.

[Guest guest]

Kathy, When I found out the hepatitis had returned and damaged my new liver I

was very distraught. But this time I am more prepared for this illness with

a new primary care doctor who really cares what happens to me and a great

transplant team. For now I feel fine and the medicines I take for my

transplant also treat autoimmune hepatitis. As long as I take one day at a

time I am able to keep a positive outlook. And you are correct, autoimmune

hepatitis usually doesn't come back after a transplant but it sometimes does

happen. Charlene

[Guest guest]

, don`t be afraid, you`re gona be okay.

Where is the university of penn? I know that Pittsburgh

is the best hosp in US for liver transplants. I assume

that they would also be knowledgable about liver

diseases. My one GI dr said that`s where he sends his pts for transplants.

But, you are probably a long way from that. It sounds like your dr is doing the

standard

thing to get you in remission. It worked for me. I`ve

had it for almost ten yrs and am still here kicking.

SOOOOOOO----don`t worry, be happy everything

will be just fine.

Have a good day. Jayne AIH-Ohio

[Guest guest]

Kathy,

Awhile back I mentioned online that I'd read that it was possible for a

transplanted liver to also be affected by AIH. That's because the problem

is in the immune system, not in the liver. Someone answered that

ABSOLUTELY that couldn't happen, but when you think about it, it makes

sense. A liver transplant doesn't cure the autoimmune disease, it only

replaces the organ that's been damaged by the disease. On the plus side,

AIH is an insidious disease and usually progresses slowly without the

person who has it even knowing anything is going wrong. I've thought all

along that if I were to have a transplant, I might face a return of AIH but

I also figured that the odds were on my side that it would take as long for

the 2nd. liver to be rejected as it did for the first rejection (due to

AIH). In Charlene's case, she was fortunate (kind of) that they were

already watching her labs because of her transplant, so they knew

immediately what was going on and this time, they identified the source of

the problem. If her first doctors hadn't been so clueless, she might not

have had to go through a transplant but possibly she could have been helped

through immunosuppressive drugs and other appropriate treatment.

I would hesitate to say " not possible " about anything that anyone in this

group says has happened or that they've been told. Autoimmune diseases

appear to be entirely unpredictable and there are only loose similarities

to the problems each of us are having. By the way, I just noticed last

night in something I was reading that there are sub-strains of AIH. In

other words, there are different forms of the disease, which explains the

varied symptoms we all experience. These different forms are identified

through lab tests.

Take care,

Geri

[Guest guest]

Re: [ ] new member

>From: S9457@...

>

>Thanks! I was diagnosed with having mild chronic autoimmune hepatitis last

>September.

>I'm 41 years old and very scared. I'm seeing a liver specialist at the

>University of Pennsylvania. I'm currently taking Prednisone and my labs are

>good, I go back in June and then she'll decide if she's going to wean me

off

>the prednisone. She tried last month but my levels went back up, so we'll

see

>what happens. If she does wean me she'll put me on Imuran with the

>prednisone, does that sound normal??

>

>Thanks for writing, your the first person I've been able to talk to about

>this to and not feel strange. Most people think it's contagious or

something.

>

>

Dear ,

Believe me, we've all been scared,and still are. I know I am when I really

start to think about this AH. I was diagnosed in 1997. I was on steroids for

1-1/2 yrs. before I was finally weaned off it while being on 6MP or

Purinethol. My last steroid dose was back last Aug. and I have been doing

O.K. The " contagion " thing is terrible. Most people have never heard of this

and look at you like you have the plague. I used to tell people right up

front that " I didn't catch this from anyone and I can't pass it on " . It's in

my genetic makeup. After awhile, I just ignored it.

You sound like your in good hands in Pa. I'm in Md. Stay in touch.

Elaine

>

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

>It's finally here! What's your opinion?

>

>Create a Star Wars discussion group at ONElist.

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

>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

[Guest guest]

[ ] new member

>From: DSTAR87@...

>

>Hi my name is charlene. i don;t know if i am getting through to you. I

had

>a liver transplant in 1996 after acute liver failure. The cause was

>undetermined at the time. Now the origional disease has returned and it is

>autoimmune hepatitis. An increase in prednisone is keeping it in check.

>please reply if anyone can read this.

>

Dear Charlene,

I am reading you just fine. So very sorry you have had to go through all

that trouble with a transplant and now wind up with AH. Anything that will

keep it in check is o.k. in my book. Stay in touch and let me know how you

are doing. I live in MD. Where are you? Do you have a lot of faith and trust

in your doctors? That's very important. Talk with you soon.

Elaine

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

>Campaign 2000 is here!

>

>Discuss your thoughts; get informed at ONElist. See our homepage.

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

>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

[Guest guest]

Hi ,

I live in NJ, my specialist here didn't know how to treat AIH so he sent me

to the Unniv of PA. It's a big hospital. There are 17 doctors in the

Gastr...Dept. I'm seeing Dr. Charmaine , she's really very nice and

answers all my questions. Sometimes I think they never tell you everything.

At first she wasn't going to treat me, and then after I got home she changed

her mind and put me on prednisone. I started at 20 mgs then to 15, now I'm at

10 mgs. They tried to wean me off gradually (7.5 mgs) but my levels went up.

So right now I'm back at 10 Mgs and have an appt on 17 June. I hope my levels

are good and they can put me on Imuran and wean the pred. This is so wierd

the way they found out was I went to the ER with chest pains. And from the

blood work they found the elevation in my liver enzymes. It took them over a

year to find out what was wrong. At first he said it's probably a fatty

liver, lose weight and everything will be fine. After a year and I hadn't

lost a significant amount of weight he ordered a liver biopsy. That's how I

ended up going to PA. In the midstream I got divorced so things have been

alittle hard for me. I've got two small children and want to be around for a

long time for them.

Thanks for listening.

Take Care, I'll write more after my appointment comes up.

[Guest guest]

Hi

Just read you post and had to write you. My son goes to Children Hospital in

Phil. and I'm pretty sure that the University is next door. My son has PSC

and autoimmune hep.(diagnosed this last April) Hes been going to CHOP for

years for Crohns Disease and Rhuemitoid Arthritis. He had his liver biopsy

in Chop but had to go to hosp. next door for ERCP(another liver test.) I

would like to talk to you since we not only seem to be dealing with the same

liver disease but the same area of the country. His RA doc also works at

Univerisity Hosp but his GI doesn't. Its scary to know that in 5(short)

years we will have to find a new GI doctor. Tyler is 16 yrs old and this has

been like you said " scary " Hope to hear from you.

Luanne Ty's mom

[Guest guest]

,

I also have AIH was diagnosed about a year ago I am 53 yrs. old. When

people asked what was wrong with me I would tell them and add I am not

contagious. I guess it is because people have never heard of AIH but

they do look at you kind of strange. Do you live in Pa. too. What do you

think of Univ. of Penn.

Pa.

[Guest guest]

Hi Luann,

If theres anything I can help you with please ask. I'm very new to the group,

I go to the Unniv of PA every couple of months. I'm 41 years old, divorced

and have two children. (7 and 4). I live in NJ( ever here of Eatontown) it's

about hour and a half away from the hospital. I like my GI here in NJ and I

feel comfortable with my specialist at the hospital.

Hope to hear again from you.

-AIH

[Guest guest]

Dear Cherie, Thanks - your reply definately helps make things a little easier.

I have spent

more time in libraries doing research on Hep C. This is the first time I have

decided to

talk to anyone besides my doctors and nurses.I have spent my whole military

career

operating, programming, repairing, and 5 years teaching computers to military

personnel -

Now I'm finally using them to search the web (2 months old). Between all the

medical tests,

appointments, etc. + my fatigue - I no longer have the time for the libraries.

Thanks once

again.

Rocco

[ ] New Member

Dear Rocco, please don't apologise for an outburst, you'll make us all feel

guilty!

Truly, this is the place for just that sort of thing. We're all dealing with

it in one way or another. Here is where we all come to " vent. " You'll probably

read how so many

people in our private lives are sick of hearing about it from us. That will

never happen to you here.

Enjoy the support, visit often, take care of yourself and keep us posted.

Cherie

[Guest guest]

Dear Cherie, Military through & through, from enlistment papers (71) to

retirement

papers (93) 21 1/2 years. I would have stayed longer but medical got in the way

of

my Submarines. You can't be sick - to continue in the silent service. I

believe a

lot of people would state - you have to be SICK - to sink on purpose. It was

either

going back to aircraft carriers, now that's sick. Plus I was homesick for 4

seasons -

Connecticut. I had enough of 2 seasons in Scotland & Iceland. That's a whole

new

story!

I came across this net / support while doing research on Hep. I was browsing

through a site

called Veterans helping veterans with Hep B & C. I guess my interest somehow

got peaked,

so I signed up for the . As for people who stay up late, I hear a

pillow calling me!

I have been used to 36 - 48 hour days at a stretch. Since I have retired, it

seems I'm constantly

going full bore- medical, etc. plus doing volunteer work @ VA hospitals. We

have to take care

of each other...... Like the website says.....Veterans helping Veterans. I'm

very glad I found that

site - it led me to this site....it topped off my Memorial Day. Take Care &

Thanks again. I'll

be back on @ zero dark thirty (5:30) - someone made a remark about O Dark Thirty

-

what the " O " stood for - I was told it meant - O God it's early.

Rocco

[ ] New member

Dear Rocco, interesting to hear that you're a military man. Have u just

recently found hepcentral? I kinda stumbled on to it, 2-3 wk.s ago. You may also

find theres almost always someone up and writing. Been to the chat room? U

probably already know there's a bunch of insomniacs in this group.

Write anytime; I for one , am seldom away from pc for more than 4 hrs. Am

total rookie w/pc but that hasn't stopped me....much.

Keep your chin up, it gives people something to aim at. ha ha! take care,

Cherie .....jcbray@...

[Guest guest]

Yes , it is normal protocal to put you on Imuran if you can't

successfully get off the prednisone.

[Guest guest]

Charlene,

You were already taking the anti-rejection drugs when your hep returned?

Did they change your medication to compensate for the return of hepatitis?

I'm so sorry to hear that you have to go through all that again, but

hopefully this time they'll be able to keep it in check indefinitely.

Meantime, they're learning more about the autoimmune process and it sounds

like there are some exceptionally promising breakthroughs. I hope you are

holding your own dedspite this setback. Consider the fact that not so many

years ago they couldn't do liver transplants at all, and now they've nearly

perfected the procedure.

Take care,

Geri

[Guest guest]

Rocco,

I'm non-military, but I'm very familiar with the VA mentality because I had a

case in court against them for 5 years in behalf of my deceased brother's

children. I won't go into the details but I was one of few to ever win a

favorable decision on the particular issue and I did not have a lawyer for

reasons that you probably know about (archaic laws that prevent payment to a

lawyer under certain circumstances.)

Point being, I think I understand very well why the VA might have known what

you had all along but didn't tell you. I'm sure that you also suspect the

reasons. It would have meant 100% disability, not just for you, but for others

with a similar condition. The longer they can delay acknowledging disability,

the longer they don't have to pay. I could tell tell you horror stories about

missing medical records, disappearing transcripts from hearings, altered files

(they weren't aware that I had two sets of all of the older files so when they

sent second sets the alterations were obvious.)

Sadly, the VA isn't the only agency or organization that will go to extremes to

avoid acknowledging a serious medical condition. Hope I don't offend anyone.

I'm just quoting from my own experience. Do you have all of your VA medical

records? Probably a good idea to get them if you haven't already. By law they

have to release them to you, under the FOIA. A Washington DC law firm helped

me get records pro bono when I started running into stone walls (like once my

brother's files disappeared and resurfaced in Hawaii, where he'd never lived or

been treated. Ooops.

>

> << What I didn't know about how far my government/hospital would go to

> conceal this problem. I guess this has been buried deep down in me for a

> while. Yes, it's scary, and it feels good just to get it out. >>

How are you doing now? I've been offline for almost a week and have missed

tons of postings.

Take care,

Geri

[Guest guest]

Geri,

I want to congratualate you for hanging in there - for your brother's kids.

That was a long 5

year battle; and I agree very few people can win an outside court battle with

the VA. The

lawyer thing - you did right by not having one, and Yes I know why.

The system (VA) (among others) make it as hard as possible to file a claim. And

one way is

medical records. Before I retired I made 5 certified copies of my medical

records. I started

my claim in 1988 with the VA, to this day they are still trying to get my

original medical

records- The Navy will not relase them (or ever for that matter) - they are

exempted from the

F.O.I. act - protected under the N.S.A. (National Security Agency). I needed

the help from

several congressman & senators (CT). They Navy refused their requests for the

records.

So I was allowed to use certified copies to process my first claim with VA. But

they

fought right up to the end - the book states " original " no copies. The best

part - they held

my medical board without me ever being present. That took around 2 years for

agent

orange, still pending are PTSD, Cancer, and now the Hep C. I'm rated @ 60 % so

far.

Every week since 1988, I make the VA give me a complete copy of my medical

records,

so I have everything up to date. As you said - you never know when they will be

lost,

sent to a different VA, ETC. Right now there is a bill in congress concerning

Hepatitis,

dealing with the veterans. I think there is one on the civilian side,

concerning Hep too.

On the VA side - they estimate between 200 - 250 million dollars are needed just

to

treat Hepatitis. That's not going over well in DC - that'll mean they will have

to cut the

pork barrel some where.

I'm doing pretty good, I'm just reviewing my Labs that came back - things are a

changing. My SGOT 70 vs 22; SGPT 144 vs 26; ALP < 20 vs 49; AIC > 8.0 vs 4.2 .

These are some changes in just 2 weeks, my spirits up, I spend a lot of time

doing

biofeedback to take care of the stress, listen to new age music; and most of all

Take

It One Day At A Time. How's everything with you? And most of all - Do you have

to deal with the VA System anymore?

I have to break this use of civilian, I'm one too. Hard habits to break.

Rocco Arturo

Re: [ ] New member

Rocco,

I'm non-military, but I'm very familiar with the VA mentality because I had a

case in court against them for 5 years in behalf of my deceased brother's

children. I won't go into the details but I was one of few to ever win a

favorable decision on the particular issue and I did not have a lawyer for

reasons that you probably know about (archaic laws that prevent payment to a

lawyer under certain circumstances.)

Point being, I think I understand very well why the VA might have known what

you had all along but didn't tell you. I'm sure that you also suspect the

reasons. It would have meant 100% disability, not just for you, but for others

with a similar condition. The longer they can delay acknowledging disability,

the longer they don't have to pay. I could tell tell you horror stories about

missing medical records, disappearing transcripts from hearings, altered files

(they weren't aware that I had two sets of all of the older files so when they

sent second sets the alterations were obvious.)

Sadly, the VA isn't the only agency or organization that will go to extremes

to avoid acknowledging a serious medical condition. Hope I don't offend anyone.

I'm just quoting from my own experience. Do you have all of your VA medical

records? Probably a good idea to get them if you haven't already. By law they

have to release them to you, under the FOIA. A Washington DC law firm helped

me get records pro bono when I started running into stone walls (like once my

brother's files disappeared and resurfaced in Hawaii, where he'd never lived or

been treated. Ooops.

<< What I didn't know about how far my government/hospital would go to

conceal this problem. I guess this has been buried deep down in me for a

while. Yes, it's scary, and it feels good just to get it out. >>

How are you doing now? I've been offline for almost a week and have missed

tons of postings.

Take care,

Geri

[Guest guest]

Hi

Like you I have only been here since Ty's diagnosis this past April. We live

in NJ...I know you know where that is. I think your last message

said that you were going to doc's on the 17th...We go to CHOP on the

29th...Let me know how you are doing....

Thanks for writing and hope you check-up goes REAL WELL..

Luanne Ty's mom

[Guest guest]

Rocco,

I got into it with the VA and the Defense Nuclear Agency mostly by accident.

When my brother died he asked me to raise his two children who were only 9 and

6 at the time. For the children to get VA survivor's benefits, his death had

to be rated 100% service connected. My brother was a " Nevada " nuclear test

veteran and had been a Marine in a trench 2000 meters from ground zero, wearing

no protective gear, during one or more nuclear tests. Within months he started

having bizarre and serious medical problems of the type that are recognized by

everyone in the world but the U.S. government and the VA as being related to

exposure to neutron radiation and low level ionizing radiation. He died from

pancreatic cancer 25 years from the month of his exposure, which is almost

exactly how long it takes for pancreatic cancer to kill following exposure to

radiation. Pancreatic cancer is one of 10 cancers that the US government

recognizes as being caused by radiation exposure, but it was only after

lawsuits like mine that they made this concession in 1988. The kids didn't get

retroactive benefits for the 5 years I managed to keep the suit in the courts.

I couldn't get legal help because of an obscure Civil War era law that no

attorney can charge a veteran more than $10.00 to represent him or her in a

suit for damages against the government (for harm caused while on active

duty.) There's another law you are probably familiar with that says that

military personnel can't sue the government at all for injuries incurred while

on active duty. I didn't sue for damages, I just fought the decision to

withhold benefits from my nephews. Before the 5 cases that were awarded in

1988, there had only been a handful of awards for radiation exposure damage. I

felt that the government was playing for time. The longer they kept the cases

in court, the less likely nuclear test vets children would be young enough to

be eligible for dependent's benefits and most widows would either have

remarried or died.

I was very persistent in my pursuit of the claim. I had input from several

groups and a San Francisco law firm, but I found that even veteran's groups

were in the pockets of the VA. If you think about it, most of them have

offices in VA buildings, paying little or no rent, and they are being paid to

run these organizations by the government. They are just paper shufflers, not

advocates, which is very sad.

Senator Cranston of California was very helpful to me. Not all US senators are

equally reactive, unfortunately. I never hesitated to go to the top, including

to the President (Reagan at the time, and I didn't vote for him, either.) It

really does shake things loose if you're outraged enough, can document what you

are claiming, and don't mind tipping their ivory towers. Not being military, I

didn't have any ingrained respect for anyone. They were either " good guys " or

not and I didn't hesitate to call them what I thought they were.

I have another brother, a retired Marine, who has several medical problems that

are almost surely Agent Orange related but because he worked for the government

after he retired, he didn't file claims as he should have. Until last October

he was working (as a civilian) for the Navy's Top Gun flying unit.

>

> Stress is one of the worst aspects of having this disease. It's so totally

> unpredictable, you don't know if you're going to have a normal life or if you

> are going to deteriorate and have to worry about getting a transplant. No

> two people seem to follow the same course, and even our labs can be totally

> dissimilar. It took me months before I stopped feeling anxious about what,

> if anything, was in my future. Now the only thing that bothers me is not

> being up to speed physically. I hate feeling limited and I detest the

> fatigue, which isn't consistent either. This past week my eyes are puffy

> and I have no idea why. I don't know if I should worry or not, so instead I

> just roll with it and resign myself to having swollen eyelids. More than

> anything I'm grateful that I haven't gone through what so many have - I

> haven't followed a fast downhill course, I haven't had any real medical

> emergencies except when my silly cat almost killed me by snagging me with one

> of his teeth one day, and I'm in remission, hopefully for a long time or

> forever. I wish I weighed about 30 lbs. less, but plenty of people who don't

> take prednisone weigh as much as I do and they get by, so why should I feel

> entitled to be skinny?

My youngest nephew was 22 in May and I haven't had to deal with the VA since

his 18th. birthday. I'm happy to be out of it, but I will give my brother's

files to his boys someday so they'll know what their Dad went through. A very

sad legacy. How long ago did you retire, or did you leave the service because

of your disability? If you're getting your medical treatment at the VA, keep

your eye on them - but you already know that. One of their favorite ploys is

to start hinting that the problem is mostly psychiatric. They were claiming

that my brother's pain was all in his head weeks before he died from

metastacized cancer. Refused to run appropriate tests because, according to

the records I have, it would have " played into his desire to get attention. "

Take care,

Geri

[Guest guest]

Hi Luanne,

I'm really excited and nervous at the same time. I got my bloodwork back

today and both my ALT and AST are both within normal ranges. The normal

ranges according to my lab are AST - Normal ranges are 0-42, ALT, normal

ranges are 0-48. I go to UN of PA on the 17th to see what changes my

specialist wants to make regarding the prednisone. I hope I can get weaned

off but from what everyone is saying here I could be in for some heavy

withdrawal symptoms. We'll see what happens. I trust my Dr's and can

communicate openly with them both. My Doctor here monitors all between visits

to PA. He thinks that the PA Dr. will either keep me on the pred (10MG) and

also put me on the Imuran. Once I 'm on the Imuran for a while, they'll start

weaning the pred. I have faith they'll do everything they can to control the

AIH. I want to enter this next phase on a positive note. I think it's good to

have support of a group but I also feel that you should feel comfortable with

the Doctors that are treating you. I hope I'm not out of line but some of the

messages seem like other members are trying to play doctor. Everyone's

system is different, one members experience could scare the hell out of

someone else, whose symptoms and AIH is completely different from the other.

I know some of the messages I've read have left a permanent impression with

me. There are some excellent Dr's out there. my advice is if you are worried

or concerned over anything ask your Doctor. They know more than most are

giving them credit for.

Thanks for asking about me, I hope your son is doing okay.

[Guest guest]

Carol, I am just getting caught up on some emails. From your description it

sounds as if you could have AIH and maybe not Lupus. I have not heard of Hep

G. Is there a specific blood test for it like Hep C to confirm diagnosis? I

know how difficult uncertainty is, but be persistent.

All the best, Roxanne

[Guest guest]

Hi ,

This site is great. It may be the only place most of us can go where we're

sure that there will be people who not only understand what we're talking

about, but understand how we feel. Hope you are doing well with your new

liver!

Take care,

Geri

[Guest guest]

Well I'm glad that you found this site...I'm a parent of a child with liver

disease and other health issues....This is a great place to get answers,

share fears, and vent...Alot of Good people here...

Luanne Ty's mom