UK PSC

[Guest guest]

Hello,

I have been looking all over the net for someone else out there who

has been diagnosed(maybe) with PSC.

My story is, I have been struggling with tiredness for a long time

and on and off feeling sickly. Two years ago, I had enough of it

interfering with work and my life and just wanted to feel my lively

self. After the doctor done regular blood tests, it was found my

liver function tests (ALT,ALP,GAMMA GT'S)were above range and I was

referred for hospital tests. This went on for one year, finally ERCP

was done but consultant couldn't reach problem. I was referred to a

liver specialist in another hospital, who did the same tests! Had an

ERCP which went horribly wrong. Had it as a day patient on a Friday,

Sunday I was back in hospital. I had cholangitis, various infections

and sepsis. I had IV anti-biotics for a week and went home, home for

two days but woke up and could'nt breathe. Back in hospital and

consultant puzzled to what was going on. Originally told stones in a

pool of bile with strictures on right side of liver afer ERCP. Then

I was told the microbiologist was having problems identifying

infection... More IV then back home. Home for a couple of days,

then ill again. Went back in and on IV, things calmed down and was

told cyst in bile duct filled with infection after ERCP. Went home

with 1 month of anti-biotics not nice but kept me away from hospital,

whilst in hospital told 20% of liver to be removed because of

problems. Went back to consultant last week and told operation now

on hold as I've been out of hospital for month, even though on oral

anti-biotics for a month! Anyway, now one week without biotics and

okay. Consultant said he thinks it is PSC and to return in

December. Anyone had similar experience, feel like don't know what's

happening etc.

Thanks for reading.X

[Guest guest]

We have several members from the UK. We always hate to have new

people sign on because we wish that no one else would need to join,

but you have absolutely come to the right place! In my case, I was

very ill and listed for transplant in early 1997. I still have my own

liver and it has shown improvement. The disease progresses

differently for many of us, but you will find amazing support and

information here.

Penny

>

> Hello,

>

> I have been looking all over the net for someone else out there who

> has been diagnosed(maybe) with PSC.

[Guest guest]

Hi Penny,

Thanks for replying.

I'm 40 years of age, so much for life begins at 40... I don't feel the

consultants can make a diagnosis, I have read a biopsy would assist

diagnosis but are not always accurate. It seems a very complex disease

and I feel like I'm in limbo with it all. I have had 2 years worth of

tests minus the biopsy and it can make you feel like you have no

control over what is happening with your body. I think about people

with for e.g. diabetes, the doc's can explain this disease, there is

always someone you know with it you can talk to but PSC is like a

disease from another planet. When you try to explain to people, they

think there has been a time in your life you over-partied and that is

why your liver isn't working properly!

Regards,

Dawn