URGENT- which hospitals & docs best for Wegener's in California, Nevada or Western US

[Redbecca]

A loved one is sick and in a DCU. Diagnosed with Wegener's 5 years ago, went into remission about 1-2 years ago. Had mild diarrhea for 9+ months, then diagnosed with CMV cytomegalovirus then put onto anti-viral meds about 1 month ago. (CMV is common in 50-70% of population ... but bad if your immune system is compromised).

He has been in & out of ER with extended hospital stays since March 1, 2010. In the last month has been regularly running high fevers, not 100% coherent. Has been on Vancomycin for the last month. Is on 3 other antibiotics also now. They lowered the meds for Wegener's to try to help his immune system fight back more.

Now, they think he has pneumnia and endocarditis (infection in lining of heart tissue). He's vomitting, running high fevers, and we think this might all be related to the Wegener's but there is no one who can figure this out in Chico. Too small of a town / hospital for this. We want to get him transfered to a better hospital & doc. Where shoudl we try to get him transfered? UCSF, Stanford, UCDavis, CPMC??

Who knows which hospitals & docs have seen the most Wegener's patients in California / Nevada or Western US?

Are there any Wegener's specialists in SF, bay area, Sacramento or nearby?

[elephant]

Go under the vasculitis foundation. Sorry I can't help you. Their our four Wegener specialist..Cleveland Clinic in Ohio, Mayo in Minnesota, John Hopkins University....forgot the other one NIH??? You might want to call them and mabey get info.
Sangye might know something.
Sorry you guys are going thru this. Did any of the doctors try to call a Wegeners Specialist? They can..

[Sangye]

The other is Boston University. I don't know of any Wegs specialists out that way. If you can't transfer him out of state to a Vasculitis center, get him to a major university hospital and ask for them to consult with a VF doctor. Don't let them go it alone. They need a VF doc on the case.

[Redbecca]

I contacted the Vasculitis Foundation and they suggested we try to contact:

Sharon Chung, M.D., M.A.S.
University of California
374 Parnassus Ave. Box 0500
San Francisco, CA
[email protected]
415-514-1673

Does anyone in the forum have experience working with Dr. Sharon Chung? Do you know which hospital in the bay area she might see patients in? Would it be UCSF?

[Redbecca]

Now I feel kind of silly, I see in the email signature that it is indeed UCSF.

Have any of you out there worked with Dr. Sharon Chung for your Wegener's?

[Lola]

For what it's worth, I remember looking up clinical trial sites for the RAVE study - comparing Rituxan and Cytoxan. I was interested in the San Francisco site.

Looked it up: Here is the Principal Investigator's name. I would think that in order to qualify to be one of the researchers, a physician would need to be able to guarantee a fairly substantial number of potential patients. (I used to be a cliical research coordinator.)

John C. Davis, Jr., MD, MPH
U of California/ San Francisco
415-502-5278.