Shelly

November 3, 1999

thanks for the note of encouragement...i feel so

badly for you. i know that the little things often are

so insurmountable with this illness and people don't

understand. i am being very mean lately, getting my feelings

hurt and such with little provocation. i just wish

there were some way to ease this on all of us. people

who don't suffer cannot understand. my boyfriend is

very supportive and wonderful, but he does not grasp

the notion that i have limitations far below his or

anyone else's my age. sigh...i guess i'll keep

fighting. take care as well. hugs to

all, shelly

November 15, 1999

I never heard of Cytomel and I am wondering what

it is for and why you are taking it. I also take

synthroid but never heard of synthroid/cytomel. I am also

new to computers and to this club so I hope I can

find your answer if you write back to me.

October 3, 2000

Hi , even though my daughter's doctor will stay and talk to her for 45

minutes I know where you are coming from. They just don't know the answers

and until a lot more research is done I don't think they will. That is what

I'm praying for before my daughter, Jodi has to be put on the transplant

list. We found out in Feb. she has AIH and cirrhosis and has been on

prednisone ever since. He has lowered the dose three times now and her last

labs were not good. She had bronchitis at the time so we are praying that is

why. She has to be retested next week and maybe they will be better or he

will have to increase the prednisone again. Hope you feel better soon and

hope you get some answers.

Genny/Jodi's Mom/AIH

Florida

March 3, 2001

Dear Cheryl and :

The rule with AIH is that a lot of times there is no rules. I never had positive ANA or smooth muscle tests until I was years into AIH, and then it was only negligibly high. I also presented with extremely high bilirubin and LFT's in the 2500 to 2700's. My bilirubin topped out at 57 (I glowed). It was excruciatingly itchy. The itchiness is caused by the excess bilirubin, so is common for any liver disease. I do agree that it is unusual for them to diagnose AIH without a biopsy. Sometimes the diagnosis for AIH comes after a process of elimination. It took more than a year for me to get a definitive diagnosis.

Kathy (AIH)

Seattle area

March 4, 2001

Cheryl...as Kathy said the itching is due to high billirubin.... Kathy

you must have really yellow,.... when my wife died she was solid yellow

head to toe (she was a blond) and looked like a giant lemon,, one nurse

commented on the fact that even her tears were yellow.

March 4, 2001

Hi ,

You don't have to fight this your self, we're all here to help each other.

If you have any questions you want to have answers to please go to the AIH info page at www.AutoImmuneHepatitis.com

As for your children getting it, you don't need to worry about that.

"AIH is not hereditary in the usual sense. Rather, it seems that it is more an "accident of nature", in which a number of different genes that predispose to the disease have come together in one individual. There are very few reports of AIH occurring in more than one member of a family, so present knowledge suggests that it is extremely unlikely that it can be passed on to one's children."

Take care, and I'm sure your doc's know what they are doing.

Matt Hastings

www.AutoImmuneHepatitis.com

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

--- Grady wrote:

> Hi, My name is . I'm crying as I write this

> because of all the pain this disease is causing. I

> am

> 33and the mother of 4 beautiful girls, 12, 10, 7 > 2.

> I have just found out about this thing 2 weeks ago.

> No

> warning, just felt crappy and went to work. My boss

> told me that she had called someone else to work my

> place for me to get to the dr. I went in and was

> high-yellow. I got the run around for 3 days in a

> small town hospital because they thought I just had

> hepatitis. three days later, my bili-rubin doubled

> and

> I was sent to the big city. I walked out 5 days

> later

> w/ no answers. 1 week later, my liver dr. said I had

> AIH, and had been on some lipid lowering agents.

> Well,

> I'm home and on acti-gall, and that's it! My eyes

> are

> almost clear now and I keep thinking, this will

> never

> happen again. they didn't do anything in the

> hospital

> for me med- wise, God and me got it together. Now

> I'been reading everyones posts and am getting

> frightened. Why aren't I on any meds like you all

> are?

> Do I take my 4 girls to the dr. to get blood work?

> Do

> I have to fear that I've given this to them? Do I

> find

> another Dr. Confused and scared! Write back

> > > > > > > __________________________________________________

>

March 4, 2001

In a message dated 3/4/01 12:58:54 AM Pacific Standard Time, gefox@... writes:

Kathy

you must have really yellow,..

Jerry:

Yes, I was so yellow that I was a dark gold. I looked startling. Sort of like a bizarre tan. Whenever I was in the hospital, I'd have doctors and nurses come into my room just to look at me and they said that I had the worst jaundice any of them had seen. When they'd run an IV, my blood would leave a yellow film on the tube. People in public were rude. When I went to the pharmacy to get meds once, people were staring and backing away from me all but ringing bells and shouting 'unclean.' The worst part was the itching. I had to keep my nails cut down to the quick to keep from flaying myself in my sleep. The doc put me on a medication called hydroxyz (sp). It helped the nausea and the itching a bit, but mostly I just had to grin and bear it until the bilirubin went back down. After I was started on pred, the bilirubin was the last thing (besides the GGT) to normalize. I was yellow for about 4 months.

Kathy (AIH)

Seattle area

March 4, 2001

Re jaundice -- I'm ordinarily extremely pale-skinned. When I first became ill and was waiting for a diagnosis (pancreatic cancer seemed the most likely possibility, according to my doctors at the time) one of my employers who lives in another city complimented me extravagantly on my dark tan, said he was glad I was spending some time in the sun. All I could do was stand in silence.

Harper

March 4, 2001

Kathy,

Amen to the rule with AIH is that there is not rules. Back in June,

altho I had LFT's really high( nurse there told me when she looked at

them she thought I had had a coronary) I was also so yellow my kids

were calling me bananamama... some of the hospital staff just liked to

come by to see how yellow I was...I cant remember the exact numbers on

the bilirubin..but they were up there. I also had bad itching and

nausea at that time...but was negative on the ANA. Only diagnosis was

hepatitis..unknown ...probably drug induced. Four months

later...jaundiced once more..high LFT but this time positive on the

ANA. My LFT's never did get back to normal all that time..and still

are not...in spite of the meds.....but hoping.

nne

> Dear Cheryl and :

>

> The rule with AIH is that a lot of times there is no rules. I never

had

> positive ANA or smooth muscle tests until I was years into AIH, and

then it

> was only negligibly high. I also presented with extremely high

bilirubin and

> LFT's in the 2500 to 2700's. My bilirubin topped out at 57 (I

glowed). It

> was excruciatingly itchy. The itchiness is caused by the excess

bilirubin,

> so is common for any liver disease. I do agree that it is unusual

for them

> to diagnose AIH without a biopsy. Sometimes the diagnosis for AIH

comes

> after a process of elimination. It took more than a year for me to

get a

> definitive diagnosis.

>

> Kathy (AIH)

> Seattle area

April 24, 2001

Welcome to the Post Op list and a wonderful new life.

Joni

Seattle

June 7, 2001

In a message dated 06/07/2001 5:47:32 PM Pacific Daylight Time,

cherylw@... writes:

<< Subj: Re:

Date: 06/07/2001 5:47:32 PM Pacific Daylight Time

From: cherylw@... (Cheryl & Rudie Klein)

Reply-to:

<<>>

,

I also thought I would NEVER have to diet again. And you know what, if I

followed the Ornish food plan that DR R suggested, I would not be doing

this. I am a few days short of 2 years and although I have lost a

significant amount of weight, I HAVE NOT retrained myself to eat healthy. WW

is really a great way of eating. It allows me to eat whatever I choose (I'm

PMS'ng today and I ATE CHOCOLATE) but I have to account for it in my daily

allotment of food. I chose to eat chocolate so I have to cut back somewhere

else. The healthy foods are unlimited, free foods, like salads, FF dressing,

asparagus, green beans, etc. SO, by allowing you to eat those foods freely.,

it teaches you that they are good for you and healthy. So, you choose to eat

them. Does this make sense? I don't consider myself on a diet. I feel like

I am on a healthy nutritional food plan. I fail at diets but I am doing

fairly well on this and really enjoying the fruits and veggies.

I was worried too, cause we did spend a lot of money to have this surgery

BUT unless you retrain your way of eating from the get go, I believe you are

prone to regain weight. I failed to realize that until my weight loss

slowed, almost stopped and I feared I would regain. I promised myself I

would never do that. This is my way of fulfilling that promise.

I was a very unhealthy eater and I desparately need this training to do

better for myself. The meetings give you support and encouragement and we

also get some really GREAT recipes that are good for you.

I hope this makes it a little easier to understand.

Cheryl

>>

Thanks, Cheryl. It does help. How much have you lost, can I ask?

June 7, 2001

<<<I think WW is one of the best diet plans there is, but I'm troubled

because so many people are doing " diets. " We just paid thousands of dollars

for a weight loss surgery, why is everyone going on a " Diet? " As Garfield

says, " Diet, is Die with a T! " I remember well, Dr. R saying he didn't want

us to have to diet anymore. Eat healthy and excersise, " YES. " Diet, " NO. "

It just scares me to think that I may have spent in excess of $12,000 to

travel to N.C., have this major, life changing surgery, and still have to

diet at some point in my life. I just felt like, and told myself that I was

done with that. >>>