RE: Years after dx/ before TX

[Guest guest]

-----Original

Message-----

I was only hoping for

a way to graphically show that there are people on this list who have lived

many years with PSC without ever needing a transplant.

Ken (32) was dx with

Stage 4 (ESLD) PSC in 1999. He was

listed in 2006, but is still doing quite well. He takes walks with his dogs, goes swimming & boating in the summer, eats like a horse, has

gained weight and can spend more than a few hours in a Bass Pro store! He fished in a tournament last year, it

was a grueling day long, constant moving, hard working day, but he won $1000

and is looking forward to doing it again this year. We know what lays

ahead, but we don’t worry about it and never dwell on it. Ken’s life with PSC has been good,

he appreciates every day he feels well.

Our family has become closer than we ever thought possible. On those days when he goes to Baylor, we

plan on doing things or going places afterwards so at the end of the day we

come home happy and tired. Our

family motto has become that of the group – Together in the fight,

whatever it takes. We have never

looked at PSC as a death sentence, because it’s not!

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

[Guest guest]

-----Original

Message-----

I was only hoping for

a way to graphically show that there are people on this list who have lived

many years with PSC without ever needing a transplant.

Ken (32) was dx with

Stage 4 (ESLD) PSC in 1999. He was

listed in 2006, but is still doing quite well. He takes walks with his dogs, goes swimming & boating in the summer, eats like a horse, has

gained weight and can spend more than a few hours in a Bass Pro store! He fished in a tournament last year, it

was a grueling day long, constant moving, hard working day, but he won $1000

and is looking forward to doing it again this year. We know what lays

ahead, but we don’t worry about it and never dwell on it. Ken’s life with PSC has been good,

he appreciates every day he feels well.

Our family has become closer than we ever thought possible. On those days when he goes to Baylor, we

plan on doing things or going places afterwards so at the end of the day we

come home happy and tired. Our

family motto has become that of the group – Together in the fight,

whatever it takes. We have never

looked at PSC as a death sentence, because it’s not!

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas