Re: geez - guess I do have autoimmune hepatitis after all!

[Guest guest]

so sorry about yur friends. I hope you get alot of donations for the scholarship. Do you have an address where someone can donate?

Also sorry you were so sick. I wish doctors would listen to us because we so often know our own bodies alot better thatn they do. Good luck on the meds and with your sugar.

the WV hillbilly

p.s. we know where to hide the bodies.

[Guest guest]

Hi W,

Thanks so much for writing about your recent experience with the

re-occurance of the AIH. Your experience was really helpful to me and I

would guess others who are weighing the possiblity of going off meds

copletely. This forum is so helpful. Thank you everybody!!

Pat from MN

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[Guest guest]

Hello ,

Sorry to hear you didn’t

get the proper care…. This should not have happened If some people did

their jobs right. Take good care of yourself.

With love

Loes, The Netherlands

From:

Weston [mailto:karenw@...]

Sent: dinsdag 21 december 2004

1:48

Subject: [ ] geez -

guess I do have autoimmune hepatitis after all!

I have been out of pocket for the last couple of

weeks. I think I may have shared with you guys about the terrible wreck

on Dec 9th that took the life of my young friend and her 5 year old

daughter. was 23 and a single mother to her beautiful little girl,

Ciara. She was taking Ciara to kindegarten and a local college English

professor heading the opposite direction hydroplaned and hit and Ciara

and also another car. The English professor and and Ciara were

apparently killed instantly. Another mother and her 10 year old daughter

were injured, but not seriously. I have been working to set up a

scholarship fund at the local college in memory of and Ciara.

was planning to start college in January and was so excited. I've

talked with 's family and they agree that they want the scholarship to be

designated to go to a 'young' (less than 28 years old) single mother. I

think that would make very happy.

I did go ahead and go to Montevallo on the afternoon of Dec

9th for my son-in-law, 's business fraternity dinner for graduating

seniors. The dinner was wonderful and I had a great time.

Unfortunately, about 11:30 p.m., just as I was getting ready to go to sleep at

my daughter and son-in-law's apartment, I was hit with a bad attack. when

it had not subsided by 3:30 a.m., I drove myself to the nearest E.R. (about 10

miles away) in Alabaster, AL. Nikki and both had to work on

Friday and I just didn't want to disrupt their sleep. Of course, I got in

big trouble from my whole family for driving myself to the hospital!

The E.R. was wonderful and they got me in immediately.

My panc enzymes were normal but my liver enzymes (AST and ALT) were 1210 and

585, respectively. Most everything else was out of whack as well - Hct,

Hgb, WBC, Potassium, Total Protein, etc. were all low. Alk Phos, GGTP

were high. They did an ultrasound and my bile duct was dilated and my

liver was enlarged. They started me on steriods for my liver autoimmune

hepatitis - AIH immediately. They admitted me under the group of general

practioners that my daughter goes to since I have no doctors in that

area. The GP called in a GI immediately and he was actually in the room

when I had the ultrasound. I could not have asked for better care from

all the doctors as well as the hospital staff. They kept me from Friday

morning (Dec 10th) until Tuesday, Dec 14th. Sent me home on 20 mg of

prednisone daily and instructions to see my GI within a week.

When the GI saw my labs and saw that my liver was enlarged

on the ultrasound, he asked why they had stopped my prednisone and

Imuran. I told the GI doctors at the hospital the story about the Mayo

pathologist and Hepatologist saying they didn't think I have AIH, despite the

fact that the Mayo path read the exact same biopsy slides from Dec 02 that were

read by the original Birmingham path and also the hepatologist at Vanderbilt

Medical Center, both of whom were positive I have AIH. Also, the fact

that I originally responded so well to standard treatment for AIH convinced my

local doctors further that I do have AIH. Anyway, the GI said,

" Well, I guess there's no doubt now that you definitely have AIH and you

absolutely have to be put back on steriods! " The GI told me he

expected to have to keep me in the hospital for at least a week

before my liver enzymes came down enough for him to be okay

with discharging me. He started me out on 60 mg of prednisone a

day on Friday and by Tuesday, both my AST and ALT were around

200. still elevated, but much better than 1210 and 585!

I already had an appt with my local GI/Hep on Thursday,

Dec 16th. I told him I hated the prednisone, was ready to kill

somebody, and already my blood sugar was going crazy (around the 300

range). He told me he wouldn't even talk about tapering the prednisone

til my liver enzymes were back to normal but he'd give me a hit list in case I

really wanted to kill someone! He said, " Gee, I guess those Mayo

guys aren't so smart after all. I don't think anyone will question

that you have AIH now. " He said that my liver was still enlarged and

tender, so the steriods were absolutely necessary despite the side effects.

The good news is that my labs from Thursday showed my AST in

the normal range and ALT was only 89. Alk phos was still elevated

but not too bad. the bad news is that I had to start taking oral

meds for my type 2 diabetes. the doctor put me on Amaryl 4 mg.

However, when I took 4 mg, I had to eat everything in the house because my blood

sugar went down to 40 (after eating half the house). Today I've

had only 2 mg of Amaryl and that, along with watching my blood sugar closely,

and being very careful what I eat seems to be doing the trick.

On Friday I called my pcp and asked him to call in something

to calm my nerves so I wouldn't end up killing someone! He was kind

enough to call in some klonopin, which helped the 'prednisone mania'

immensely! When I went on prednisone initially in Jan 03 after my AIH

diagnosis, I was emotional and cried easy, but this time I was just mad at

the world. I think it's because I knew that the doctors at Mayo were

wrong and I had even told my GI that I really thought I needed to go back

on Imuran a couple of months ago but he said as long as my liver enzymes were

near normal he didn't want to put me back on it.

The bad thing is that my liver has NEVER been enlarged until

now. I've had several ultrasounds in the last few years and none have

ever shown my liver to be enlarged. When I had the liver biopsy in Dec

02, it showed stage 3 fibrosis, but, as far as I know, my liver was not

enlarged.

I had just gotten an updated copy of Dr.

Palmer's book on hepatitis and liver disease and she says that 50% of people

with AIH relapse within six months of stopping meds and either 80 or

90% relapse within in a year. She says that once you have relapsed after

stopping meds, the chances you will relapse again if meds are stopped is

greatly increased. So, as far as I'm concerned, I plan to go back on

Imuran as soon as my GI is ready to start it back and stay on it forever.

He plans to taper the prednisone and then add Imuran, which is what they did

the last time and that seemed to work fine.

Part of what makes me so mad is that when you look at AIH, I

pretty much have every single symptom and am a fairly classic case. I

think the doctors at Mayo and places like that often think they are gods and

that there's no way that other doctors could be better diagnosticians than they

are. I think the word Hubris (overbearing pride or presumption;

arrogance) sums up my opinion of way too many of the doctors that I have

seen. Thank goodness my current doctors actually do a pretty good job of

taking care of me.

In a way, the hospital admission in Alabaster was really a

blessing. Who knows how much longer it might have been before we realized

my liver was enlarged and my liver enzymes were higher than they had ever been

if not for the kind doctors who treated me and honestly believed me when I told

them that I was in terrible pain, nauseated, and throwing up!

Don't know if I'll have a chance to write again before

Christmas. I hope this finds everyone doing well.

W

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