Judy

August 13, 1999

Judy,

Autoimmunity can be genetic, though that doesn't mean that the children of

everyone who has an autoimmune disease will also have autoimmune diseases.

Your doctors should have been suspicious immediately when you started

showing signs of liver disease, considering that your mother had AIH. Did

they ask you about family members and any major diseases?

I also had a very negative experience with the first GI doctor I saw when I

started getting sick. He ordered all the appropriate lab tests, including

LFTs, ordered an ultrasound and a CT scan, got the very alarming results

and sat on them. In fact, I couldn't even get him on the phone and he

didn't return calls. After two weeks while getting more and more sick, I

found a new doctor (we were new in this city at the time) who was an

Internist in her 70's or maybe older (!) She had me in the hospital the

day she saw me for the first time, based on tests the other doctor had

ordered and shrugged off.

Your GI doctor probably jumped to the conclusion that you had fatty liver,

thus you were possibly an alcoholic or had a history of weight problems.

However, that was a dangerous conclusion. My ultrasounds and CT scans also

showed fatty liver and only that elderly doctor put the pieces together. I

was neither overweight nor a drinker, incidentally, lucky for me I guess.

Otherwise, maybe no one would have bothered to do further tests until it

was too late.

Two weeks before I was hospitalized with end-stage liver disease I also had

a grossly enlarged gallbladder filled with fluid. My feet and ankles were

so swollen I could hardly walk and I couldn't sit upright due to the fluid

in my abdomen. Yet, in the hospital an ECRP disclosed that there was

nothing wrong with my gallbladder. It simply was not processing fluids due

to my malfunctioning liver. They " cannalized " the bile ducts and

incredibly, when I left the hospital 5 days later I was 35 lbs. lighter and

no longer had a huge stomach.

Your doctor needs to have an attitude check. Three to four days could come

down to a matter of life or death if you happen to have something really

serious going on. Your symptoms sound very much like mine were when I was

hospitalized. Almost identical. The difference is that they did that

ECRP and a liver biopsy while I was hospitalized, the day after I first saw

that wonderful woman doctor. They found stage IV cirrhosis and stage 3-4

inflammation. Considerable fatty liver, of course.

The itching is also a clue that even a lay person like me and the rest of

us know means that there is a liver problem. As my labs dropped the

itching basically stopped for me. Before I was hospitalized it was driving

me crazy and it continued until the liver inflammation was under control.

Be very selective when you get a new doctor. If you live near a major

teaching hospital or medical center - and I mean MAJOR, try to get in

there. Stress that it's urgent and tell your doctor's office that you

need copies of all lab reports, reports from diagnostic tests and her

summaries. If she balks, tell her that you are taking the records to a

Hepatologist (be sure to see a Hepatologist and ask if they have experience

treating AIH, just to be safe). Some doctors try to send records only to

the new doctor but I believe that they have to give the patient a copy.

You need to keep copies for your own personal records.

Either fax or mail the records ahead before your appointment so the new

doctor will have been able to review them. But to be safe, also carry

copies with you.

It can be very difficult to get an appointment with a good Hepatologist.

Tell them that it might be a medical emergency and try to talk to the

doctor's nurse or some intake person who is capable of evaluating the info

you give them. Let them know that your condition has gotten worse due to

lack of diagnosis and treatment and you are very concerned. As a last

resort, you might go about it like I did and find an Internal Medicine

specialist who can get you in to a Hepatologist a little more quickly. One

Hepatologist told me that they had a 3 month backlog for new patients.

Good luck and keep us posted about how you're doing and if you are able to

find a qualified and responsive doctor.

Take care,

Geri

August 13, 1999

In a message dated 8/13/1999 3:17:40 AM Pacific Daylight Time,

spangs@... writes:

<< Did they ask you about family members and any major diseases? >>

My mother died recently (in April) and I had not seen the doctor since last

October. I think she did inquire about this on my initial visit back in 94,

but at that time and even in Oct. we were unaware that my Mom had a problem.

Evidently, my Mom had suffered from AIH for many many years, but was never

diagnosed until it was too late. She became jaundiced in April and from an

ex-ray they discovered she had a blocked bile duct and thus concluded she

need to have her gallbladder removed. When they did blood work before her

surgery, nothing showed up to indicate she had such major liver damage (the

doc said) or they would not have done the surgery. He said people with such

a damaged liver have a hard time overcoming surgery, and thus, she didn't.

She died 2 weeks later. They said her liver looked like she had drank all

her life. She never had.

I'm still waiting to hear from my results, and if the GI doesn't want to

pursue the matter, then I will find another doctor. Thanks for your words of

concern and advice.

Judy

August 13, 1999

My mother has no appetite and in fact finds food repulsive except for

Ensure. Is that a sx of liver disease?

J

>From: JBerry122@...

>Reply- onelist

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>Subject: Re: [ ] Judy

>Date: Fri, 13 Aug 1999 12:54:17 EDT

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>From: JBerry122@...

>

>In a message dated 8/13/1999 3:17:40 AM Pacific Daylight Time,

>spangs@... writes:

>

><< Did they ask you about family members and any major diseases? >>

>

>My mother died recently (in April) and I had not seen the doctor since last

>October. I think she did inquire about this on my initial visit back in

>94,

>but at that time and even in Oct. we were unaware that my Mom had a

>problem.

>Evidently, my Mom had suffered from AIH for many many years, but was never

>diagnosed until it was too late. She became jaundiced in April and from an

>ex-ray they discovered she had a blocked bile duct and thus concluded she

>need to have her gallbladder removed. When they did blood work before her

>surgery, nothing showed up to indicate she had such major liver damage (the

>doc said) or they would not have done the surgery. He said people with

>such

>a damaged liver have a hard time overcoming surgery, and thus, she didn't.

>She died 2 weeks later. They said her liver looked like she had drank all

>her life. She never had.

>

>I'm still waiting to hear from my results, and if the GI doesn't want to

>pursue the matter, then I will find another doctor. Thanks for your words

>of

>concern and advice.

> Judy

>

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

August 13, 1999

In a message dated 8/13/1999 5:23:07 PM Central Daylight Time,

shireen42@... writes:

<< Is that a sx of liver disease? >>

,

I don't know in general, but it was for my Mom. We tried and tried to

convince her to eat, but she found everything disgusting! They finally

started tube feeding her ensure before she died. This was when she was in

the final, critical stage of cirrhosis. She said she began losing her

appetite a few months prior.

Judy

February 3, 2001

Hi Judy: My daughter, Jodi sees Dr. Reddy in Miami. Well, now I should say

she sees the transplant team in Miami since she was put on it before

Christmas. We live in Haines City which is 4 hours from Miami. Debbie in

West Palm sees Dr. Jeffers and in Melbourne has an appointment to see

Dr. Reddy in a few days. Where do you live and when did you start going to

? Nice talking to you and looking forward in getting to know you.

God bless, Genny/Jodi's Mom/AIH

April 27, 2001

Thanks, Gerald, lots of good info here.

> on prenisone

>

> http://www.midwestarthritis.com/html/steroids.htm

April 29, 2001

Hi Judy: My name is Genny and I live in Central Florida. My daughter

Jodi, 27 yrs. old was diagnosed with AIH a year a go Feb. and has been on the

transplant list since Dec. We are doing a living donor transplant within the

next four or five weeks because she has not responded to the regiment of

meds. You will find 2 months of Prednisone is a very limited time frame. I

know it seems like a long time to you now but if you have AIH being on

Prednisone and Imuran is the treatment needed. Yes, there are side effects

like weight gain from retaining fluids, ache and mood swings but not treating

AIH is not a very good plan.

There are many AIH educated people in this group who I'm sure will be glad

to give you links to go to for information. One of the first ones I started

out with is hhtp://www.healthcentral.com/mhc/top/000245.cfm

I'm sorry if I have missed your personal information like how old you are

and where you live but I stay pretty busy working and trying to keep up in

the group and keeping Jodi straight. LOL That would be a full time job

indeed.

Nice talking to you and I hope your test come up with something that can be

treated very easily and not AIH.

Take care and God bless, Genny/Jodi's Mom

April 30, 2001

Hi Judy,

You shouldn't worry to much about the meds and their

side effects. The doc's are aware of the side effects

and if they where more severe than the AIH itself then

he would thing again. I would strongly advice you to

take the meds as prescribed by your doc. Three recent

studies (in the USA, Sweden and Germany) have

indicated that, for most people with AIH whose disease

is well controlled, life expectancy is not

significantly different from that in the rest of the

population. But if untreated it could be very short,

depending on how severe the AIH is.

Will I have to stay on the Imuran forever?

This will depend partly on how severe your disease was

in the first place and how well (and how quickly) it

responded to the treatment. Only about 20-30% of

people can remain off the drugs for long periods.

Try going to the AIH Website at

http://autoimmunehepatitis.homestead.com and reading

about the drugs and the FAQs.

Take care

Matt (AIH-95 LT-99)

================================================

--- Judy <sewfit418@...> wrote:

> Hi Jerry.....I'm just a real worrywart, lol. I

> would never not take

> the recommended meds. After all the research I've

> been doing, I

> understand the consequences of leaving the AIH

> untreated. I'm just

> looking to see if there's anything new in the med

> field that would

> have less side-effects. The " C " word scares me to

> death. I'm also one

> of those people that don't believe everything the

> doctors tell me.

> I've had several bad experiences with having done

> that.

>

> I'm really trying not to worry but that's easier

> said than done.

>

> Another question, will I have to stay on the Imuran

> forever? I sure

> hope not.

>

> Thanks for all your caring support & information. I

> really do

> appreciate it.

>

> Take Care,

> Judy in Va.

>

> > Judy..... any immunosuppressant increases the risk

> of contracting

> > cancer,

> >

>

__________________________________________________

May 1, 2001

Hi Matt...I worry about drugs & their side effects b/c I believe

that's how I got here in the first place. The docs treat you for one

thing & it seems to cause problems somewhere else. I've read where AIH

can be triggered by certain meds. I was on heavy doses of tylenol &

anti-inflammatories trying to control the pain of a severally

herniated cervical disk which had compressed a nerve root when all

these elevated lfts showed up. After lots & lots of testing &

withdrawal of meds they finally figured out that it was the tylenol

that was causing the problem. At least, when I stopped taking the

tylenol the lfts went back to normal. That could be co-incidence but I

don't think so. So ever since then I don't take what the doctors say

on blind faith.

I have pretty bad arthritis & the worse thing for that is weight gain

so I've worked really hard to keep my weight down & muscles strong to

support the joints. Hence the " fit " in Sewfit. The " Sew " is b/c my

passion is sewing which has been seriously contained latetly. To add

to that I already have osteopenia, so the steriods are sure as heck

not going to help that. Then there's the matter of a failed fusion at

2 levels in my neck that need to be redone. I obviously can't even

think about that till I'm off or at least at very low doses of the

prednisone.

I know I have to be treated for this if it turns out I have it but I

want to make very sure it's the right & necessary treatment. I'm a

former nurse & I guess we make the very worse patients. A little

knowledge is a dangerous thing, LOL.

Reading back over this it sounds like I'm angry at you. Please don't

think that. I'm just angry at the whole situation. I really appreciate

all the advice & info you have provided. BTW, I checked out the

Homestead site. Thanks, lots of useful info there.

Take Care & hang in there.

Judy in Va.

PS...why can't I write short posts, lol

> > > Judy..... any immunosuppressant increases the risk

> > of contracting

> > > cancer,

> > >

> >

>

> __________________________________________________

>

June 17, 2001

Hi Judy: How are you today? I'm doing OK, trying to caught up on my e-mail

a little. I had over 800 posts and had to delete a lot of them. Jodi is

doing great, getting around a lot better than me. I did go to church this

morning and did just fine.

I wanted to ask Kayjay where she is from and welcome to the group.

Take care and God bless.

Genny/Jodi's Mom/ Post living donor transplant 5-18-2001

Boy it really feels funny to say that.

June 17, 2001

Hi Genny and Jodi; I have not written you and I feel guilty but I am so relieved for you and think it is so wonderful that this could all be accomplished and especially from mother to daughter. I have followed all the e-mails and kept up with the process, also wrote your address in Miami to send cards but never got the job done as you know. Just another to do things I failed but my thoughts and prayers were with you and wish you well from here on. BTW I have a son that is a Dentist in Calif. of interest since you work for one.

I was diagnosed chronic AIH 3/97. My Dr's are with Mayo Clinic sdale. I have been on various mg's of prednisone since then but never more than 20 but when I lower the mg's below 5, I have a flare-up. After 3 attempts Dr has said he will not allow me below 5 mg and I have been taking 100 mg of azathioprine since '98 also. I am doing good for my age as far as activities, and my bone density tests are great. I do have some osteoarthritis but could have that even w/o AIH. My main complaint is fatigue and weight gain. I do have glaucoma and use eyedrops a.m. and p.m. daily and even that may or may not have been caused by prednisone because I have had eye problems since I was very young but surely hasn't helped.

Take care now and get the rest you deserve, both of you.

Leona

Re: [ ] Judy

Hi Judy: How are you today? I'm doing OK, trying to caught up on my e-mail a little. I had over 800 posts and had to delete a lot of them. Jodi is doing great, getting around a lot better than me. I did go to church this morning and did just fine.I wanted to ask Kayjay where she is from and welcome to the group.Take care and God bless.Genny/Jodi's Mom/ Post living donor transplant 5-18-2001Boy it really feels funny to say that.

October 22, 2001

Judy I guess I am founder and president of RBTOA. Yep I think I will have

to change to another organization. I don't qualify for the RBTOA. (Real Big

Tits of America) Boobs are the least of my worries. It didn't hurt this

time either and usually it hurts. Once they get all that mass of flesh in

there they feel compelled to try and squash at least part of it out the

sides. Well this time they didn't even squash. Phyllis

December 19, 2001

Thanks so much, . May I have an address for her? I would like to send

her a little help. Thanks, PJ

December 19, 2001

Thanks a million, check will be in the mail right away! PJ

December 19, 2001

Aw PJ, I am getting sooooo emotional seeing all you guys so generous!!!

Larice White, 2206 Mills Court, Pleasant Garden, NC 27313,

336-674-8815, email: artstart1999@...

Glo posted that she was going there to bring stuff and Ginny volunteered

also, so get with them if you have " stuff " instead of sending.

Re: Judy

Thanks so much, . May I have an address for her? I would like to send

her a little help. Thanks, PJ

December 19, 2001

, ??

What's with all the emails ??

TommyB

Re: Judy

>

> Thanks so much, . May I have an address for her? I would like to

send

>

> her a little help. Thanks, PJ

>

April 7, 2002

((((((((((((( Judy )))))))))))))))

Big hugs to you! I hope you are better. I know how those infections can

get.

alley

May 28, 2002

Sandy:

This is the craziest thing I've ever heard! I would change specialists.

One of the side effects of treatment for many (perhaps even most) is weight

loss and decrease in appetite. I do not promote going on treatments to lose

weight but staying off it at stage 2/3 fibrosis due to being overweight!

Tell the doc to get a grip. What does he plan to do wait until you're ready

to go on the transplant list? Given the fact that I have the opposite

problem (being severely underweight), it would be more likely that they'd

keep me off treatment than if I were overweight. Nutrition is probably the

single most important thing when you have Hepatitis. Withholding nutrition

is a Heppers Suicide Mission. Please forgive the venting but it makes me so

angry that a doctor would have the compassion of a snake and still have the

gall to call himself a physician.

Huggers,

Deb

Hatred stirs up strife, but love covers all sin.

Proverbs 10:12

Re: Judy

>

> Sherry and Judy:

>

> My name is Sandy and it is such a relief to know that I am not just crazy

or depressed for no reason. I started seeing a therapist as soon as I knew

for sure that I had Hep C. I had been diagnosed in 1994 and following tests

all showed that I didnt have it. I was really confused. So when I found

out that the Hep C foundation was giving free hometests for awhile I got one

and it showed that I had it. So I took the results to my doctor and it came

back negative again. I started to cry and said, " How many times am I going

to have to torture my mom with these back and forth results. Sadly I never

had to tell her again because she passed away a week later. Finally I

changed primary Doctors and requested the test again along with the viral

lode test and it came back positive. From there he did a biopsy and it said

stage 2/3 fibrosis. Now I am really on a roller coaster ride with emotions.

I am over weight and the specialist said he wouldnt even consider treatments

until I lost 60 pounds. He said for me to go on a 500 calorie diet. Funny

how it is so easy for someone who isnt sick to prescribe such a diet. That

is only 2 slimfast shakes a day. Or a bowl a cereal and one potato and a

salad. Jeesh! Anyway I am lucky to have a place to vent. Thanks for

listening.

>

> Love In His Light

>

> Sandy

>

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

>

May 28, 2002