Bit of a mental question, rather than physical..

[Guest guest]

Hey ho fellow PSC folk.

My PSC seems to have advanced a wee bit over the past few months. In

March i was admitted to hospital when i started turning a lovely

shade of yellow, and managed to spike a rather alarming fever of 39.3

degrees C. (think that's about 103 F, damn silly different

scales! ), and was feeling down right rough as a dog. My bilirubin

count jumped up to about ~250 (i'm hoping the same levels are

measured in England as the rest of the world - normal on the count is

about 2-4 i believe) and i wasn't having very much fun. Docs stuck me

on all sorts of anti-biotics, and had a stent placed in my CBD during

a rather lovely ERCP. This managed to settle down the fevers and

infection and my bilirubin count dropped to ~100. Docs said this was

my new base level as it wasn't going any lower, so they sent me home.

A week later i again started glowing yellow again, feeling sick

again, and started having the most godawful pains in both sides of my

back. I went to Accident & Emergency and got admitted again. Had a

chest x-ray and they found blood clots in both of my lungs - really,

really not fun (although the oral morphine they gave me for them was

fun! Started seeing many strange things! :S ) and also my liver was

playing up again, so another long course of anti-biotics. After about

2 weeks i was released again with my bilirubin down at ~100. Not

exactly normal coloured, but acceptable all things considered.

Things were going alright, bili was stable, pain was gone from lungs,

returned to work and had just got back up to full time when on the

25th June i was admitted to l'hopital again because i was turning a

funny shade of, you guessed it, yellow! This time though there were

no fevers and no nausea, so the docs just though my stent had been

blocked up. They lined me up for an ERCP which went ahead a few days

later. They found that my stent had vanished! When i asked where they

said " You've probably passed it. " .. certainly didn't feel it if i did!

Anyway, they stuck another stent in me, a nice big long 12cm one

which opened up 2 strictures in my CBD, then they sat back for a week

waiting for it to drain.

It didn't drain.

My bilirubin's stuck up above the 200 mark, and i look like a bunch

of bananas on legs.

They sent me home saying: " You might still drain, but now we're

thinking the damage is further up in your liver in the intrahepatic

(sp?) ducts, so there's nothing else we can really do at the mo apart

from monitor your bloods. " They also said they wanted me home before

i hit one of them with a baseball bat as they could see i was a wee

bit fed up.

Now, after all that drivel (seems i needed to moan somewhere), the

question i was wanting to ask, and i know it might be a wee bit

difficult to answer it is:

Although i know a lot of you are going through worse periods than i

am at the moment, how do you cope with.. well.. being around people

whilst being so yellow? I've been out of my apartment twice since i

was discharged on Friday, and i've already had one comment shouted at

me about how yellow i am, and had whole streets stare at me. I can

deal with physical pain, but this just mentally hurts. Got home after

the comment shouted at me and collapsed onto the couch in a fit of

tears. Now i'm pretty much scared to go outside as i find it so hard

to deal with. I know it's only human reaction when you see something

out of the ordinary to notice it, but when you're the thing that's

out of the ordinary.. it's.. poo.

Mum tells me to hold my head up high and ignore the people, but

holding my head up high just means i notice it more. Do I just act

normal and accept the comments and talking behind my back? Do i hide

away and not let anyone see me (which i've done for the past few

days.. and know i shouldn't really..)? Do i buy some fake tan and

sunglasses and hope it covers it up?

It's just really pants atm. Sorry if this seems insignificant to some

of you going through the latter stages of the illness, but for me,

right now, it's everything.

Not sure what replies i'm expecting,

Take care

- Bradford, England.