I'm a New Member 29 years old post transplant psc (reoccurence relapse) LETTER

[Guest guest]

Hey guys im new here, i've had psc since 15 years old, had my

transplant at the age 27 march 2005. I just want to speak to the

young people going through what im going through. I just recently

finished college May 2007, i thought was going good and everything i

gained weight and etc. But you know what happened i moved to orlando

florida and had a violent crash, i had a temperature rushed to the er

and osecola regional does not know how to treat post transplant

patients. Then i went to Florida hospital and almost died due to the

fact the doctors being unable to treat me, god bless mount sani and

Schiano in nyc that saved my life. When they got me off the

plane i had 2 liters of fluid in my right lung which cause me pain,

due to bile backing up into my chest. Also my liver was inflamed.

Right now im recovering thanks to prayers from people, i've had liver

biopsies, i've had ct scans, blood drawn, chest tube in my back, um

ptc which is cathetar or line that protrudes out your right side to

drain the bile um a bump develop on the wound where the line is and

bleed. Im scheduled for another ptc so they can dialate the bile

duct. My doctors at Mount Sani Dr Chang and Anot and the rest of the

team are great. Right now im on disability and i really don't know

where my life is going and my parents are older and retired. It

breaks my heart that this situation is a burden on them.

The main thing i want young people to understand about psc and dealin

g with it. Once you get your transplant, man really take care of

yourself and be prepared to be at the hospital and have a doctor for

the rest of your life. Right now i know a majority here is waiting

for a transplant which is hard enough. But i want young people to

know that its hard to go through.

Girlfriend or boyfriend you may like or have, relationship may not

work out because you cant move to be with them, or you can't continue

on a job to be independent that is what you might go through. Right

now for me im 29 living with my parents, i do have this psc but its

human nature to want to be on your own. Trust me man just recently it

broke my heart to see my mother watch me suffer, before i was young

and invincible even when i had psc before the transplant. But your

going to reach a point like me where your gonna reflect and realize

your mortality. Right now its hard for me to accept my mortality,

most of you will finish college and your goals but don't be surprised

by obstacles coming back, just be mentally prepared.

Anyway my message was for young psc young people because its harder

for them. I just had to get that off my chest. I got another

procedure next month and my liver levels are coming down. But i just

want young people with psc to know, man your parents won't be around

forever and plan for your future because their will be points where

you cant work or be on your own and that sort of thing. So find a

carer you can work from home or telecommute.

Brown post transplant March 2005, psc reoccurence currently