Martha

[Guest guest]

Martha, thanks so much for your

post. And yes, the transplant coordinator (who’s supposed to make

sure the doctors up there oversee Jim) wasn’t at all telling me anything

about suspected organ rejection when he called.

So, this would be (more) questions to the

group at large: a liver biopsy is an invasive procedure, so, obviously, not

without a certain element of risk. It’s a gold standard for PSC diagnosis,

and essential to the process of being evaluated and waitlisted for transplant, but…

WHY would we want to put Jim through a biopsy again, if it could be avoided?

Under Jim’s set of circumstances, isn’t there another way to

confirm or rule out recurrent PSC? Example: have Jim lose more weight and

exercise more, as an approach to possible fatty liver… if the Alk Phos

goes down, would that be indicative of fatty liver, not recurrent PSC? I

was trying to avoid it (to simplify things), but perhaps we should get anal and

request copies of every last blasted thing. You’re right, Martha: as

we attend more clinics, and should we ever be told again that they haven’t

recvd lab results, I could definitely whip out a copy for them. But, geez…

I mean… sheesh.

Jim says biopsy isn’t just about

looking for the presence of fattiness, or sclerosing scars. He says it will

reveal things on a cellular level, which provides critical information for the

diagnosis. Maybe I’m just tired (I did work like crazy out in AZ,

folks) and struggling with all this, as my mind’s on overdrive and I’m

doing the desperately-grabbing-at-straws thing.

On another note, Jim returns from Whitney

a couple days before you set off for Mammoth & Yosemite… but you can

look out for any signs he may have left of having been there, LOL. Enjoy

your adventure, Martha!

I should think of one or two get-my-mind-off-all-this,

fun things to go out and do today. I’m gonna call up a friend and

ask her to go see a matinee of The Devil Wears Prada!

Love,

Maureen