appt today

[Guest guest]

Hi all,

I had my freebie appt. today with the hep doctor to gain more info so I

could make a decision whether to be listed or not. It looks like right now

I will wait a while - all my systems look good, I feel good (except for

fatigue - is that from the disease or my family ?!?!), blood work is all

normal and no sign of abnormal cells. I have another CT scan scheduled in

Oct. to recheck the June results.

My doctor was talking about some research he has been reading and the

positive results he has seen from psc patients taking FK506. I need to do

some research on this but he said he saw the before and after films of

patients taking this drug and the strictures actually improved over time.

I'm trying not to get my hopes up and am somewhat afraid of taking an

immunosuppressive drug although he said it would be a much smaller dose than

a transplant patient would take but I am interested in what you all know

about this or if anyone is on it.

He was also interested in this group. I told him a little bit about our

interaction and he asked if I would do a questionaire for all of you

(hopefully at least some of you) to fill out and return to me via email. It

would mainly be about what your treatment is right now and also how you are

feeling emotionally about your treatment. He seemed especially interested in

hearing from anyone who is in experimental therapy but wanted everyone he

could get info on. You wouldn't need to send your name although your

location in the world might be helpful. He said that this the kind of info

other hep doctors need to see. Is it ok if I work up a short questionaire

for our group to fill out? Let me know.

Also he said Dr. Lindor from Mayo is coming to our center for a few days.

I told him to try to recruit him to stay! We desperately need him. Today

my appt. was at 9:30 and saw the doc at 11:30. I think my blook pressure had

risen from my normal 90/60 to a much higher reading by then. ,

isn't Dr. Lindor s doc? Couldn't remember.

Have a great night - hopefully this is our last 90 degree day for the year!!!!

Barby

married 21 years, mom of 5 sons- KS

UC - dx in 1965 (11yo), ostomy 1972, BCIR (continent ostomy)1994

PSC- dx in 1999