Newbie Here!

[Guest guest]

Hello- My name is Amy and I was unfortunately recently diagnosed

with PSC. The diagnosis took over 8 months, and while I am glad to

know what I am finally dealing with I am also overwhelmed by the

dignosis. I am a young 30 somethingish married mother of 2 little

ones. And I just really feel alone in all of this. It is so

random! I am really feeling the need to connect with others who

have this condition, which is why I joined this support group.

Anyways, I just wanted to introduce myself out there. I am still

trying to figure out how all of this works. I have lots of

questions of course. And will probably start asking little by

little as time goes on. I am still trying to wrap my mind around

this. And I guess I am going to have to figure out how to live with

this disease long term (I hope and pray!).

I live in the Pacific Northwest and am under the care of a

hepatologist in the area. I am currently taking the yummy

cholestyramine in the morning (don't you just love that stuff?),

Urso, Calcium and vitamins A & D. I feel well for right now and hope

that continues.

If any of you have any advice or words of wisdom I am all ears.

Thanks and best wishes,

Amy

P.S. I am already making plans to attend the conference next year.

And would love to do whatever I can on my end to help raise

awareness and support.

[Guest guest]

Hi Amy,

Welcome to the group - glad you found us, but sorry you need us. I recently calculated that there are about 40,000 of us in the US (about 9000 are women), so it's easy to feel alone in this. This group is wonderful, and you'll find lots of information and support here. I also attend a Liver Support group when I can. The American Liver Foundation has many support groups throughout the country which are helpful for anyone with a liver disease (or bile duct disease), since the symptoms are similar for the different liver diseases. Also, the path to getting a transplant are similar. Here's the web site:http://www.liverfoundation.org/

Here is the web site for PSC literature, put together by our member :

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

And here is the web site for PSC Partners Seeking a Cure (this site is educational and is for fund-raising):

http://www.pscpartners.org/

Marie (55); California

UC (1970); toxic megacolon (1977); melanoma (1990); colectomy for adenomas (2000 - cirrohsis of the liver seen); J-pouch (2005/2006); PSC & Autoimmune Hepatitis (2006). Find a local pizza place, movie theater, and more….then map the best route!

[Guest guest]

Hi Amy

Welcome to a great group of people. There is lots of knowledge here, and

heaps of support. I am a 42yr old happily married mother of two healthy

girls, have had cvid all my life (nearly 17 years of ivig wow), had lymphoma

in 2003 (successfully treated...touch wood), and am now on the waiting list

for a liver transplant. The liver problems may or may not be related to

immune deficiency..nobody knows. I only tell you this so you know there are

lots of us that have been through the mill, can relate to tests and bad

news...and are still here.

Welcome,

Penny T (in Qld, Australia)

[Guest guest]

Marie- Thank you very much for your support and the resources you

gave me links to. I appreciate it! And I am sure I will be in touch!

Amy

[Guest guest]

Penny- Thank you very much for your kind note. What is cvid and

ivig? I guess I will figure all of this out soon.

Amy

>

> Hi Amy

>

> Welcome to a great group of people. There is lots of knowledge

here, and

> heaps of support. I am a 42yr old happily married mother of two

healthy

> girls, have had cvid all my life (nearly 17 years of ivig wow),

had lymphoma

> in 2003 (successfully treated...touch wood), and am now on the

waiting list

> for a liver transplant. The liver problems may or may not be

related to

> immune deficiency..nobody knows. I only tell you this so you know

there are

> lots of us that have been through the mill, can relate to tests

and bad

> news...and are still here.

> Welcome,

>

> Penny T (in Qld, Australia)

>

[Guest guest]

Hi Amy,

and welcome to the group. What part of the Pacific Northwest are you in? I'm live up in Maple Ridge, British Columbia and there are several members in the Seattle area. You are not alone, you have joined a very supportive group with lots of prayer warriors and a lot of " hands-on-experience " with PSC. I've was diagnosed with he disease 18 years ago (when I was 33) and there are some in the group that have had the disease longer. Feel free to ask any question or ask for any prayer and someone (probably more than one) will give you and answer.

Ian (51) PSC 89

Hello- My name is Amy and I was unfortunately recently diagnosed with PSC. The diagnosis took over 8 months, and while I am glad to know what I am finally dealing with I am also overwhelmed by the dignosis. I am a young 30 somethingish married mother of 2 little ones. And I just really feel alone in all of this. It is so random! I am really feeling the need to connect with others who have this condition, which is why I joined this support group.Anyways, I just wanted to introduce myself out there. I am still trying to figure out how all of this works. I have lots of questions of course. And will probably start asking little by little as time goes on. I am still trying to wrap my mind around this. And I guess I am going to have to figure out how to live with this disease long term (I hope and pray!). I live in the Pacific Northwest and am under the care of a hepatologist in the area. I am currently taking the yummy cholestyramine in the morning (don't you just love that stuff?), Urso, Calcium and vitamins A & D. I feel well for right now and hope that continues.If any of you have any advice or words of wisdom I am all ears.Thanks and best wishes,Amy :)P.S

.. I am already making plans to attend the conference next year. And would love to do whatever I can on my end to help raise awareness and support. -- Ian Cribb P.Eng.