Re: Alison home from hospital

[Guest guest]

Alison,

I'm glad you are home and that were able to get to the root of the problem.

Sorry to hear the outcome. But I hope the trial will go well for you. We will

be saying extra prayers for you.

By the way, my wife , used to live in Cheltenham when her dad was

stationed there while in the Air Force. Her maiden name was Hampton and

she lived on Quat Goose Lane. Is that anywhere close to you?

Larry - Baltimore, UC95 PSC96

[Guest guest]

Alison,

I'm glad you are home and that were able to get to the root of the problem.

Sorry to hear the outcome. But I hope the trial will go well for you. We will

be saying extra prayers for you.

By the way, my wife , used to live in Cheltenham when her dad was

stationed there while in the Air Force. Her maiden name was Hampton and

she lived on Quat Goose Lane. Is that anywhere close to you?

Larry - Baltimore, UC95 PSC96

[Guest guest]

Hello All

Came home from hospital yesterday night.Not quite Club Med here! very tired

will need to catch up on sleep.Well I had a Ercp Ct scan and bloods done

several times during my stay. they found no stones but had to do a cut to

widen the opening to let my sludgey bile out.

In the nine years of having Psc I have never been accessed before and I suppose

I had the faint hope that it could be early stages or localized PSC,but no such

luck they say it is widespread and class me as" severe with fibrosis" I don't

know the full extent coz the Ct scan result wasn't back I may find out more

at my next appointment in three months.Is fibrosis reversible?I have asked

about this and the extent of damage to my liver but the doc wouldn't say.

He said they found widespread narrowing but no major strictures.

The Ercp was done by Dr Chapman himself ,who with Dr Parkes came

to fetch me on the trolley to the OR because there was a lack of porters.

This made Dr Chapman pretty mad as it had disrupted the whole list

of patients to be done that day.He appologised to me as we went thru

the hospital and said he would be complaining about this lack of porters.

We got to Or and Dr Parkes got me ready and Dr Chapman said he would

stay and do my ERCP all went well.

I was seen by Dr Chapman's houseman Sue Cullen who had previously

accessed me for the Urso trial.She said that although this jaundice had caused them to drop me from the trial,Dr Chapman had decided to let me go back on it.

My trial number is 13! and I have started them today.

I have gone thru feelings of frustration and dispair at my lack of help in the last

nine years.If I had not found this group eleven months ago

I would have been by now desperate,problably very sick and

had nowhere to turn.Thank you all for getting me thru the

last 11 months.Hope you have a lovley time this Thanksgiving.

Regards

Alison Organ

Cheltenham

England

UC29yrs PSC9yrs

[Guest guest]

Hello All

Came home from hospital yesterday night.Not quite Club Med here! very tired

will need to catch up on sleep.Well I had a Ercp Ct scan and bloods done

several times during my stay. they found no stones but had to do a cut to

widen the opening to let my sludgey bile out.

In the nine years of having Psc I have never been accessed before and I suppose

I had the faint hope that it could be early stages or localized PSC,but no such

luck they say it is widespread and class me as" severe with fibrosis" I don't

know the full extent coz the Ct scan result wasn't back I may find out more

at my next appointment in three months.Is fibrosis reversible?I have asked

about this and the extent of damage to my liver but the doc wouldn't say.

He said they found widespread narrowing but no major strictures.

The Ercp was done by Dr Chapman himself ,who with Dr Parkes came

to fetch me on the trolley to the OR because there was a lack of porters.

This made Dr Chapman pretty mad as it had disrupted the whole list

of patients to be done that day.He appologised to me as we went thru

the hospital and said he would be complaining about this lack of porters.

We got to Or and Dr Parkes got me ready and Dr Chapman said he would

stay and do my ERCP all went well.

I was seen by Dr Chapman's houseman Sue Cullen who had previously

accessed me for the Urso trial.She said that although this jaundice had caused them to drop me from the trial,Dr Chapman had decided to let me go back on it.

My trial number is 13! and I have started them today.

I have gone thru feelings of frustration and dispair at my lack of help in the last

nine years.If I had not found this group eleven months ago

I would have been by now desperate,problably very sick and

had nowhere to turn.Thank you all for getting me thru the

last 11 months.Hope you have a lovley time this Thanksgiving.

Regards

Alison Organ

Cheltenham

England

UC29yrs PSC9yrs

[Guest guest]

,

I am so glad you found Dr. Chapman and they are finally treating you

s you should be. What dose of Actigall are you on? This probably

will help keep you from so many infections. It has really helped to

keep Phil from having the infections he had previous to being on it.

Peg

[Guest guest]

Alison,

I'm so glad you are home and can get some rest. What an honor to

have Dr. Chapman as your doctor! Most of us won't have that opportunity.

It sounds like he took good care of you and has a good bedside manner too.

Dr. Chapman has you on the Urso. Does that mean you are on the trial?

What do you mean by you are no. 13? Sorry for my dumbness here.

Take care of yourself and let us know how you are doing.

Blessings,

Barby

married 21 years, mom of 5 sons- KS

UC - dx in 1965 (11yo), ostomy 1972, BCIR (continent ostomy)1994

PSC- dx in 1999

nordgren1@...