Wednesday, April 15, 2009


I still remember a lot about the day I first received the diagnosis of chronic idiopathic autoimmune hepatitis. I was thirteen. It was spring. I was a freshman in Catholic high school.

Here's a poem I wrote about it when I was a freshman in college:

May Day
Ironic, that the first tears shed
were when they said she wouldn't die.
It wasn't there in the dim levelor-
striped light of the office; while there
she held it together and smiled.
To this day Mother quotes her on some
wise-beyond-thirteen remark
she never did say, about eighty percent being good
odds and nasty side effects not mattering.
Then she said "Don't worry, doctor
our little one's not vain. She's
handling this all quite well."
Outside May skies wept and at home
she sat alone in the dark
bathroom, stared at the vague person
above the sink, thought of who she used
to be and what she was about
to become, remembered the boys and the parties,
popularity and beauty and now only
that she must make others proud
and then began to hate herself
Inside she wept and today
she thanks God that no one was
there when she sat on the windy bluff thinking
eternal thoughts
and wished that on the way
home some drunk would cross the center and
set her free.

I hadn't really been sick. There was one day in December when I had been yellow, but I also had a yellow bathrobe. I slept a lot (2-3 hours after school and then another 8 hours over night, and all weekend), but I was 13. School was hard and I was working hard, and sometime in January I had gotten the flu and then a bronchial problem that wouldn't go away. I had antibiotics and during a physical my pediatrician noted that my URQ (upper right quadrant) was tight - thus that my liver was inflamed.

For some reason, before they could do a liver biopsy, there was a 3-month time of blood tests (mine were bad) and inflamation that needed to be documented... so I think I had my first overnight hospital experience sometime in April. That would be 25 years ago this week or last.

They kept me overnight since I was young. At this time I was seeing my first GI (gastroenterologist) who did the procedure. They are still done the same way - a pretty thick needle with a notch cut out of it is inserted between the ribs and into the liver, then a sleeve comes down over the needle and a notch of tissue is removed. I think they attempt to sample only one or two pieces... but with my first biopsy they needed 4 to get enough tissue and not scarring in order to do the pathology. I was thankfully sedated very heavily. (My long infatuation with sedation began so early!!!)

Then, about two weeks later, the diagnosis...

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