Re: Aubrey -- Ken - FOR JONATHAN

August 25, 2000

,

I just want to say thank you. Without knowing you even answered some

questions I had about listing, points and how the levels work into all this.

I was also confused with these numbers. I thought that seeing the numbers go

down like Phil's Alk Phos March 567, Now 212 meant he doing good.

Also, the reason for not going on the list right now. You mentioned the Hep

Doctor maybe meaning 7-8 years before listing. I feel that's also what these

doctors at the evaluation meant for Phil. The Hep doctor said it's good news

that he doesn't need to be on the list now. He said it just means he's doing

well. I mentioned the attack he had in March and the pains he gets from back

to front also the itching and the fatigue. The Hep doctor said some patients

will experience these symptoms and some could go without any of them.

I guess you just never know. Again, I just want to say thanks. I didn't know

what to make of all this.

, wife of Philip dx 2/00 PSC & mother of 4

P.S. How is your daughter? Hope she's feeling better.

August 25, 2000

> ,

>

> I just want to say thank you. Without knowing you even answered

some

> questions I had about listing, points and how the levels work into

all this.

> I was also confused with these numbers. I thought that seeing the

numbers go

> down like Phil's Alk Phos March 567, Now 212 meant he doing good.

>

It could mean that he's doing good too! I think the main thing is to

look at the overall picture.... if Alk Phos etc are on a consistent

downward trend, but symptoms and values like albumin are getting

worse, it's possible that Alk Phos etc. are getting lower due to

accumulated damage...

> P.S. How is your daughter? Hope she's feeling better.

She is doing better, although she's still having problems with

intermittent diarhea. We're keeping a close eye on her...

athan

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