psc and possible transplant

March 27, 2003

I've had PSC diagnosed since 1999. The cause is totally unknown. Have

had 9 ERCP procedures in the past few years. Liver function nos. are

not too bad at this moment, but bad infections with increased temps

have been recurring of late and they're running out of antibiotics.

Right now, I'm at home on a 14 day course of intravenous infusions (8

hour cycle) of imipenem, which my spouse has been taught to do. I

have a PICC line threaded in my arm which she attaches the tubing to--

and I will continue with this line for a while until we know that my

fevers can be stabilized on oral antibiotics, which will be rotated.

I had begun a rotation procedure when these infections began. Since

they seem to be running out of workable antibiotics, the docs here at

the UCSD medical center in San Diego, CA are proposing that I begin

an evaluation process to see If I am able to be a candidate for

transplant. I'd be interested and grateful to hear from anyone who

has had some similar experience. Any new knowledge would be welcome.

Transplant list time in your area? Length of evaluation process?

March 28, 2003

Hi -- I've been in your situation with recurrent/ongoing

infections (they're not sure which) ... PICC line, lots of IV

antibiotics and was thought to need a tx by August 1997. My

infectious disease doctor who managed my antibiotics was a great

guy who eventually knocked down the infections and we keep

everything at a simmer with low dose sulfa (which I was

desensitized to).

So, my questions are as follows:

1. do you have an infectious disease specialist working with you?

2. have they done a bile culture to see what's growing (you may

be suppressing an infection, not eliminating it by using an

antibiotic not suited to the organism)?

3. have they ever used gentamicin (which can damage inner ears

and cause problems with your balance)?

I was listed for tx in April 1997. I am sitting here with my own

liver and quite stable -- except for my rotten balance thanks to

" gent " (which saved my life though.......). You just never know!

Penny

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