Alaska is on the PSC Map

[Guest guest]

Hello PSC Group,

My name is Lori Oliver and I live in Anchorage, Alaska. I was diagnosed

with PSC by a consulting physician in Seattle based on a cholangiogram

done during emergency gallbladder removal. (Ended with open surgery to

remove a large gallstone from my bile duct.)

I was diagnosed last month and see a GI in 2 weeks. During this

painfully emotional wait, I've been reading group posts, newsletters,

and articles like crazy. (I've got 3 pages of notes ~ the GI won't know

what hit him!!)

I'm 41, married, and have a 5 year old daughter. Other than my husband,

I hesitate to discuss this with family or friends because everyone's

prognosis is different. This past year has been relatively rough

(depression, fatigue, joint pain, stomach cramps with diarrhea, poor

memory, etc... Hey, isn't this what happens when you turn 40?) and now

I think many problems are related to PSC and can be treated. I'm

anxious to have an ERCP and colonoscopy.

Right now, my biggest concern (besides cholangiocarcinoma) is that the

GI won't know what to do with me... after all, when the surgeon

wondered if my " funny looking " ducts were cause for alarm, he consulted

Seattle. PSC is not well known, so what kind of treatment will I get

living in Alaska? But on a positive note, I did find one hepatologist

that currently practices here! ;-)

I want to say thanks so much to all the contributors, and to let you

know Alaska is on the PSC Group Map, and feeling less isolated for it!

Lori O.

PSC 2007

[Guest guest]

Welcome Lori,Sounds like you are doing the best thing and that is educating yourself on PSC.As long as your Dr. is willing to work with you, you can both learn together.There are not that many experts around which is why we flew my son to the Mayo in Rochester MN.Once we were seen there and had a treatment plan, then we followed up with the local GI.You might want to consider traveling to the nearest expert for an evaluation and then follow up locally.Then again, Alaska is a bit far but maybe there is a closer expert.Anyone know?LeeHello PSC Group,My name is Lori Oliver and I live in Anchorage, Alaska. I was diagnosed with PSC by a consulting physician in Seattle based on a cholangiogram done during emergency gallbladder removal. (Ended with open surgery to remove a large gallstone from my bile duct.)