Praying for you Jacky, Life with this PTC Tube and the issues of this disease!

[Guest guest]

Dear friends here, this is really my first commitment to a psc group.

Before i just wanted to be to myself because this psc disease can

make you feel anger to depression to other thoughts i won't mention.

I have this PTC tube in and i have to change it every so often. The

first they did it, it hurt like hell but after having it done a

couple times it's fairly routine. The problem i have is taking a

shower, because i hate getting the dressing wet. I don't change the

dressing i just try to keep it dry. It might be a bad thing but it's

a pain to change it and play with it. Last time it fell out of my

side and i had to wait overnight for radiology to put it back in.

The reason i have the ptc tube is because they can't move the sludge

or stone at the bile duct, so this is what keep the bile draining. I

flush the ptc twice a day to. Right now thank god the liver numbers

are normal with 2.5 prograf but my psc has returned even though i had

a transplant 2005. Right now my social security got cut but i still

have medicare and medicaid. It's been hard to get my life on track

and i'm 29 years old. God bless my parents that continue to be there

for me. But this economy is tanking and i have to find some way to

work. I did finish college but i think im going to do medical

billing, i have B.S in liberal arts which is useless if you ask me.

So right now i have to change careers so it can fit my disability.

I live in a bad neighborhood (Far Rockaway Queens) in nyc due to the

cost of medical bills and my parents can't retire because of me. I

think this disease robs people of alot of things. I hope we can have

discussion on the effects this disease has on the family and their

money. I've had psc since i was 15 years old, my prespective is from

a teenager growing into manhood and trust me i've suffered alot,

losing girlfriends all types of things. But i keep the faith and when

i go to Mount Sani Hospital i shake my head when i see young kids and

teenagers with kidney disease and liver disease because the doctors

never prepare you for the future they always give you positive

enforcement which i like but it can be misguiding. But i think they

need to prepare people for the future especially young people so they

understand you more than likely won't be able to live on your own

without some help.

But i keep the faith , i don't drink or smoke. I just have to live

the cards that we are delt. As bad as my situation is, their are

people worse off then psc people like myself. I'm happy i can move

around and do basic things in life but this disease destroys

exceptional people because if i never had this disease i probaly

would be in the streets doing god knows what in new york city. So i

had to do well in college and watch my health.

I'm praying for everybody here and the young people that can't

articulate the way they would want too. Trust me i've yelled at my

parents, taking out my anger out on them (predisone didn't help) i've

been depressed, im ashamed of it because i was in my early 20s and

just out of my teenage years, but i rather talk about here even

though some people wouldn't like to admit the issues psc people go

through. It's a struggle sometimes just to get out of bed but i keep

the faith and i liking reading this support group.

Brown UC 94 psc 95 tx 05 psc again