old timers

[Guest guest]

I'm one of the oldest old-timers, here since first gathered

us from the autoimmune liver disease group in what, '97, '98?

The group was essential to my well-being then. No so much now.

The group has changed significantly, but then I have too.

Finding a cure for PSC -- while an extremely worthwhile goal -- is

not one of my fundraising priorities. Selfish though it may be, I

need to focus on a myraid of quality of life issues in the here and

now.

I don't get group e-mail anymore; I do check the Web site semi-

regularly, but really pick and choose the messages I read. (subject

lines are sooooo important) I do still feel it's important for those

of us who are farther along in the journey to help those still

climbing. But there are decreasingly fewer calls for information.

OK, now for the update -- Quantell is 14 -- 15 in another couple of

months. We're coming on on the 4th tx anniversary and have just been

able to drop down to every-6-month labs. His new liver is still

considered " sub-optimal " and his prognosis remains " guarded. " His

labs remain significantly elevated, making his PELD high enough for

immediate re-listing, if/when he crashes. He continues to have a

stent that is changed every 3 months. It protrudes from his body and

is infused daily with gentamiacin and colymicin. He also takes

prograf, actigall and cipro. The hearing loss he sustained post-tx

is stable.

And all in all, he's doing very, very well. He's pushing 5' (after

years of negligible growth), plays piano, sings in a chorus, is a

rabid sports fan, and is in the middle of a school project

researching games played by kids in Brazil.

In fact, he's doing so well that last summer we expanded our family

to include two girls, half-sisters now 13 and 14, both with special

needs. (I thought there may have been one or two pediactric sub-

specialist I hadn't yet met.<g>)

One last note -- if there are any parents who have not yet

discovered it, check out PSCMOMS, also a yahoo group (but

significatnly quieter). Dads are welcome too (as are grandparents

and other caregivers.)

Pam (formerly known as qmom -- mom to Quantell dx 1996, tx 2001)