geez - guess I do have autoimmune hepatitis after all!

[Guest guest]

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 disease (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 (for AIH). 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