My post to the group in 2001 -- I was diagnosed this week in 1996

[Guest guest]

> Five years ago today I was bedridden, could only get around in a

> wheelchair and could barely sit up without help as I was

> recovering from the hepaticojejunostomy and the ravages of the

> gentamicin used to kill the abscesses caused by an ERCP. I was

> told I'd have to be transplanted by August at the latest.

>

> Today, I can walk (with assistance from a cane), drive and

> generally enjoy life. I've held my first grandchild, seen my son

> married and enjoyed my family and friends. These are things I

> didn't expect to live to see. And -- I still have my own liver.

> In fact, even an expert on PSC could never tell that I had it by

> looking at the labs!

>

> Sometimes, when you think the clouds are the darkest, the sun

> comes shining through. I just wanted those of you who are having

> a tough time that miracles are possible in some unusual cases.

> The fact that PSC is an unusual disease makes predictions even

> more difficult. Make the most of each day.

>

> Penny

Since writing that message, I have welcomed 4 more grandchildren into the

world, traveled to Europe, sailed the Caribbean, written some books for my

grandchildren, done volunteer work -- the list goes on.

I've learned a lot from this group along the way. I've learned to trust

some doctors and ditch others. I am grateful for my " normal " bloodwork, my

family and my friends. I try not to sweat the small stuff and try to do

what makes me (and my family) happy.

I'd never heard of PSC before my surprise diagnosis; I still wish I hadn't,

but I know that there is hope.

I'm off to play with some grandchildren for a few days. I've been blessed

to have this time.

Penny

[Guest guest]

Thanks for the reminder, Penny. Not everyone (maybe the minority?) progresses

to transplant (or worse).

I've been symptom-free since 2001, by all measures. As Ivor has repeatedly

noted, " most PSC patients will now die with PSC, instead of from PSC " (Dr.

Chapman's quote, I believe).

It's not been easy, it has been scary, and hard on our caregivers. Keep on

keepin' on!

Arne

---- PR Weller wrote:

Since writing that message, I have welcomed 4 more grandchildren into the

world, traveled to Europe, sailed the Caribbean, written some books for my

grandchildren, done volunteer work -- the list goes on....

I'd never heard of PSC before my surprise diagnosis; I still wish I hadn't,

but I know that there is hope...