Re: Question for Seattle Members

[Guest guest]

Lori,I can't answer as to the Dr's in Seattle.Maybe someone else will chime in.However, you can find out more by going to:wwwpscpartners.org which is the PSC Partners Seeking a Cure web site.All the free newsletters are there to see and you will learn a lot from them.Partners has a conference each year to educate patients and to give patients a chance to meet with experts and ask questions. Our next one will be next May in ville Fl.That would be a long trek for you but maybe you could combine it with vacation?In the mean time, besides the newletters and psc literature site, you can get a couple papers on high dose urso for a resource totake to your physician. They are in the file section.Let us know how else we can help.Lee> You might want to consider traveling to the nearest expert for an > evaluation and then follow up locally.Thanks Lee.It might help if I had some resources to give my Anchorage GI during our initial meeting. Would members from the Seattle area mind telling me who is treating them and where? Are there any "PSC Experts" in Seattle?

[Guest guest]

Lori,

The only Liver Transplant Center in the State of Washington is the

UW Medical Center and there are several qualified hepatologists

located there (Dr. Bruce Tung, Dr. Anne Larson, Dr.

Saunders). I was quickly referred there by my GI shortly after

diagnosis. I also have been a participant in the high dose urso

study being conducted across the country for the last 4 years and

that study is still ongoing but I am pretty sure it is not enrolling

new participants. My hepatologist, Dr. Kris Kowdley was the lead

investigator at the University and is considered a leading expert in

biliary diseases such as PSC. He has recently moved his practice

and the high dose urso study to the Benaroya Research Institute at

Virginia Mason in Seattle.

There are several other well qualified GI/Hepatologists located in

the area. I know Dr. Kozarek, also at Virgina Mason is well

respected, and I am sure there are others at Swedish Hospital as

well. I believe Swedish was investigating the possability of

becoming a Liver Transplant Center but I do not believe that has

happened or what the current status of that is.

Hope that helps.

in Seattle

>

> > You might want to consider traveling to the nearest expert for

an

> > evaluation and then follow up locally.

>

> Thanks Lee.

>

> It might help if I had some resources to give my Anchorage GI

during our

> initial meeting. Would members from the Seattle area mind telling

me

> who is treating them and where? Are there any " PSC Experts " in

Seattle?

>

> Thanks,

>

> Lori O.

> PSC 2007

>

[Guest guest]

> Would members from the Seattle area mind telling me

> who is treating them and where?

My doctor is andra Read, she is a doctor in the Seattle

Gastroenterology group. I was referred to her by Dr. Boyer who

is a liver specialist I had been seeing in Tucson, AZ.

So far Dr. Read has been great, as she's very communicative and agrees

that Urso and fish oil are worth using, unlike Dr. Boyer.

The Seattle Gastroenterology website is: http://www.seattlegastro.com/

I hope that helps,

Trevor

[Guest guest]

I couldn't agree more with 's summary of the Seattle situation. Dr Tung is my specialist; at my last visit, he was full of questions about our April conference and was extraordinarily impressed with the panelists involved and the support that our partners continue to provide for each other on a daily basis. The University of Washington Medical Center's Hepatology Clinic reported that they're tracking nearly 200 PSC patients from multiple states. They're clearly the most experienced group of specialists on PSC in the region. Dr Kozarek, at Mason Clinic, is an international expert on ERCPs. No question that he's among the best at this craft; he travels often and has trained hundreds of specialists on how to perform ERCPs. I just had my first UWMC ERCP with Dr. Tung and frankly had a better experience than I had with Kozarek - mainly because the facility was far nicer (I'm

sorry but I once saw ants crawling around inside Virginia Mason Hospital - YUCK!) and their anesthesiology at UW was more thorough and appropriate for my situation (my blood pressure drops really, really low when my body is in stress - just shoving more demerol into my veins isn't a very good solution). Debbie in Seattle UC '72, J-Pouch '93, chronic pouchitis, abnormal LFTs '99, PSC dx 2005

Be a better Heartthrob. Get better relationship answers from someone who knows.Yahoo! Answers - Check it out.

[Guest guest]

I couldn't agree more with 's summary of the Seattle situation. Dr Tung is my specialist; at my last visit, he was full of questions about our April conference and was extraordinarily impressed with the panelists involved and the support that our partners continue to provide for each other on a daily basis. The University of Washington Medical Center's Hepatology Clinic reported that they're tracking nearly 200 PSC patients from multiple states. They're clearly the most experienced group of specialists on PSC in the region. Dr Kozarek, at Mason Clinic, is an international expert on ERCPs. No question that he's among the best at this craft; he travels often and has trained hundreds of specialists on how to perform ERCPs. I just had my first UWMC ERCP with Dr. Tung and frankly had a better experience than I had with Kozarek - mainly because the facility was far nicer (I'm

sorry but I once saw ants crawling around inside Virginia Mason Hospital - YUCK!) and their anesthesiology at UW was more thorough and appropriate for my situation (my blood pressure drops really, really low when my body is in stress - just shoving more demerol into my veins isn't a very good solution). Debbie in Seattle UC '72, J-Pouch '93, chronic pouchitis, abnormal LFTs '99, PSC dx 2005

Be a better Heartthrob. Get better relationship answers from someone who knows.Yahoo! Answers - Check it out.

[Guest guest]

>

> Dr Kozarek, at Mason Clinic, is an international expert on ERCPs.

No question that he's among the best at this craft; he travels often

and has trained hundreds of specialists on how to perform ERCPs. I

just had my first UWMC ERCP with Dr. Tung and frankly had a better

experience than I had with Kozarek - mainly because the facility was

far nicer (I'm sorry but I once saw ants crawling around inside

Virginia Mason Hospital - YUCK!) and their anesthesiology at UW was

more thorough and appropriate for my situation (my blood pressure

drops really, really low when my body is in stress - just shoving more

demerol into my veins isn't a very good solution).

>

>

I have to agree with your observations of the Virginia Mason

facilities. I was originally seeing Dr. Ayub but after my colonoscopy

I quickly found a new doctor at Swedish. The exam rooms at VM were

generally dirty and outdated and the support staff didn't really seem

to have it all together. The doctor didn't even order *any* lab work

on me after 1.5 months of a flare up (this was right before my PSC

diagnosis). This overall lack of cohesiveness made me feel as if I was

receiving substandard care and I have no regrets about leaving.

In my opinion, Virginia Mason may have top leading experts but if you

can't support them in a clinical setting then there is little value

added to the patient.

#2

[Guest guest]

I don't want to turn this subject into a competition among Seattle

doctors/facilities, but I wish to defend Virginia Mason.

My husband, Brad, was a patient at UW for many years, due to his j-

pouch and ultimate diagnosis of PSC. Undeniably a beautiful facility

now (not always). Dr. Tung performed an ERCP in April of 2005 on

Brad--diagnosis PSC. Based on a recommendation by our GP, Brad

visited with Dr. Kozarek at VM.

I will jump to the chase here. After a botched liver biopsy at

another medical facility which I will not name, Brad was admitted to

VM hospital under the care of Dr. Kozarek. Dr. Kozarek and his team

saved Brad's life. Dr. Kozarek requested Brad's records from UW.

The ERCP done at UW in 2005 noted " possible adenocarcinoma. " WE WERE

NEVER INFORMED. The rest is history. Brad has cholangiocarcinoma

which was diagnosed at Mayo last year. He is not eligible for the

transplant program because the CCA has spread to lymph nodes. He is

currently being treated at VM on the oncology floor.

We interviewed 4 physicians at different facilities in Seattle

(including UW) after the CCA diagnosis. All but Dr. Picozzi at VM

wanted to treat Brad with only palliative care. Thus, VM was our

choice. And so far, CT scans remain clear for tumor.

Diane

Whidbey Island