Re: New to PSC

November 22, 2004

,

As I said to Marcia, we're sorry you're here but we're glad you

found us. I've only been a member here for a few months, but the

knowledge of this disease that exists here is staggering.

As far as the milk thistle goes, I think you will find varied

opinions on its effectiveness. I personally got no relief from it

in the early stages of my diagnosis, but if there's one thing I've

learned, it's that everyone has their own pattern of progression and

what doesn't offer relief for one person, may for another. The only

thing I would suggest is that you discuss it (and any other

homeopathic or non-traditional treatments) with your hepatologist.

You may not get an enthusiastic response, but these people need to

know about EVERYTHING we are putting in our bodies.

Best,

Bill

PSC '00, Listed Tx 11/04

January 9, 2005

Dear Loni.

> We are sorry for your diagnosis but happy you have found us. We hope to

> help you with support and information. Please check out the site below

> to see the agenda and information on our upcoming conference.

http://www.psc-literature.org/Conf2005.htm

> You will also find a link here to our new foundation; PSC: Partners

> Seeking a Cure . Our mission is to:

1] raise funds with which to research the causes and cures of PSC

2] promote PSC and organ donation awareness, and

3] provide education and support to PSC patients and their families.

All donations are tax deductible. Please share this site with

your family and friends.

We hope that you will be able to join us in Denver April 29,2005.

Go to the site below to answer our poll of who will be attending.

Check airline prices now as there is a price war on and fares are

cheaper.

http://groups.yahoo.com/group//surveys?id=1586345

>

> Feel free to ask all your questions and voice your concerns here with

> our

> members.

> Lee Bria (PSC Support Group)

> __

>

> Hi, you'll have to forgive me, I'm new to PSC and support groups but

> I'm so excited to have found you. I was diagnosed with colon cancer

> in June of 2002 then Crohn's in July of 2003 and then with PSC in

> March of 2004. I live in a small town and as far as I know there is

> no one with this disease. I feel a great need to talk to other

> people that know what I'm going through. I have a wonderful family

> and friends that always there for me but they don't always

> understand what I'm feeling. I travel 2 hours from my town for

> medical care at a Deaconess Hospital. One doctor is from s

> Hopkins and the other is from Mayo. I just resently had a ERCP due

> to rising liver tests and they had to put a stent in my common bile

> duct because of narrowing. I have no itching or jaundice but I'm

> feeling some pain in the upper abdomem in the last few days. I saw

> that there is a conference coming up in Denver and I hope to attend

> as I have a sister who lives in Fort Colorado. She is a

> Nurse Practitioner and my medical advocate. Thanks for letting me

> share some of my journey with you and looking forward to hearing

> from a other PSC member.

> Loni

>

January 9, 2005

Dear Loni;

Welcome to the group! I am very sorry to hear about your PSC

diagnosis, but I am glad that you found this group. I think that

you'll discover that this is a really friendly, helpful and very

knowledgeable group. We'll be very happy to lend some friendly ears,

and answer any of your questions. You and your sister are very

welcome to join us at the Conference in Denver. Please let us know

if we can help provide any information. Thanks for sharing your

story. We look forward to getting to know you.

Best regards,

Dave

(father of (19); PSC 07/03; UC 08/03)

>

> Hi, you'll have to forgive me, I'm new to PSC and support groups

but

> I'm so excited to have found you. I was diagnosed with colon

cancer

> in June of 2002 then Crohn's in July of 2003 and then with PSC in

> March of 2004. I live in a small town and as far as I know there

is

> no one with this disease. I feel a great need to talk to other

> people that know what I'm going through. I have a wonderful family

> and friends that always there for me but they don't always

> understand what I'm feeling. I travel 2 hours from my town for

> medical care at a Deaconess Hospital. One doctor is from s

> Hopkins and the other is from Mayo. I just resently had a ERCP due

> to rising liver tests and they had to put a stent in my common

bile

> duct because of narrowing. I have no itching or jaundice but I'm

> feeling some pain in the upper abdomem in the last few days. I saw

> that there is a conference coming up in Denver and I hope to

attend

> as I have a sister who lives in Fort Colorado. She is a

> Nurse Practitioner and my medical advocate. Thanks for letting me

> share some of my journey with you and looking forward to hearing

> from a other PSC member.

> Loni

January 9, 2005

Dear Loni,

Welcome. I hope you'll find the group as wonderful a resource as I

have over the past year. I so wish I'd looked for this group sooner

(I was diagnosed in 1998). As wonderful as family and friends can be,

no one understands this disease like those of us who have it. One

thing you'll learn quickly though is that we all have our own quirks,

and our disease moves at a different pace and with different symptoms

for us all. If you have any questions, we can provide you both with

research answers and anecdotal answers from our own experiences.

Take care!

Deb in VA

PSC 1998, UC 1999, Listed for Ltx 2001, MELD 18

January 9, 2005

Loni

Hello and welcome. Sorry to hear life has been so ruff for you for such a

long time. Any one of those problems is enough for anyone for a lifetime! I

too live in a small town (<10,000) and was recently diagnosed. For me UC was

a constant friend before surgery, nearly 30 years in all. Been down many of

the roads you describe in the past 6 months. Seem to be stuck with fairly

profound fatigue, but still working, thanks to a sedentary job. I certainly

understand the need to talk about this particularly in the early months. I'm

seeing a Doc out of St. Louis who specializes in the disease. I have had the

occasion of having several physicians tell me that they either never heard

of the disease, or knew about it but never saw it, in some cases in 40 years

of practice. As you note, it is fairly rare.

Best

Your Southern Illinois Neighbor

jd, 44

UC 1973, Jpouch 2000, Pouchitis 2001, PSC 10-04

ston City IL

krmpotich@...

New to PSC