Mild PSC but Stage 2 liver disease?

[Guest guest]

Confused a bit here. I had my ERCP done on June 26 and the gastro doc said it

was

the mildest form he's ever seen. It was the first time he had to consult with

the

radiologist to be sure. I went away from that appointment thinking that maybe

it

meant my disease was progressing slowly and that I'd be looking at a longer time

line

to transplant.

Yesterday I met with the liver doc (same hospital) and he said that although the

beading in the ducts was slight that my liver disease is at stage 2. That

surprised me

a bit. I asked some questions, but I still have some confusion. This seems

like a

contradiction to me.

Can anyone shed some light on what this means? Am I looking at a shorter time

to

transplant then? How long does it typically take to get from stage 2 to 4?

Thanks, as always...

PSC June 2006

[Guest guest]

jglr23 wrote:

> Can anyone shed some light on what this means? Am I looking at a

> shorter time to

> transplant then? How long does it typically take to get from stage 2 to 4?

>

I'm sure someone can jump in with the technical definitions of the

different stages of liver disease, but the general answer to your

question is that staging isn't a particularly reliable way of monitoring

PSC.

For instance I've probably been at stage 4 for the about last six years

(I figured that out by reading the report from my biopsy back in '99 or

2000... my hepatologist didn't even tell me what stage I was... he said

he doesn't really pay much attention to in PSC patients since it doesn't

tell him that much). The main point is that some people end up moving

through the stages pretty rapidly and get a transplant quickly, others

can sit at the same stage for many years.

Just another one of those unpredictable things about this disease!

Hope that helps a bit (even though all I really said was " I don't know " !)

athan

[Guest guest]

jglr23 wrote:

> Can anyone shed some light on what this means? Am I looking at a

> shorter time to

> transplant then? How long does it typically take to get from stage 2 to 4?

>

I'm sure someone can jump in with the technical definitions of the

different stages of liver disease, but the general answer to your

question is that staging isn't a particularly reliable way of monitoring

PSC.

For instance I've probably been at stage 4 for the about last six years

(I figured that out by reading the report from my biopsy back in '99 or

2000... my hepatologist didn't even tell me what stage I was... he said

he doesn't really pay much attention to in PSC patients since it doesn't

tell him that much). The main point is that some people end up moving

through the stages pretty rapidly and get a transplant quickly, others

can sit at the same stage for many years.

Just another one of those unpredictable things about this disease!

Hope that helps a bit (even though all I really said was " I don't know " !)

athan

[Guest guest]

As always, your answers are very helpful...

As for the cholangitis attacks, my last one was in early June. I was due for

one the

week after my ERCP, but I was on Cipro then to prevent pancreatitis. Maybe it

is what

kept the attack at bay. The future plan is that as soon as I feel one coming

on, no

matter how minor, I will be admitted. If it's too rough for me to travel an

hour and a

half to the hospital, I can go to my local hospital and they will transport me.

If it's

bearable, I can get a ride down there. I would expect that after my next attack

and he

has a chance to actually monitor one, my doc would recommend the antibiotics for

me in the future.

So with this disease we just go on living life as wonderfully as we can and hope

that

the attaks don't occur? Ok. I can deal.