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

  1. #1
    Redbecca is offline Registered User
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    Default URGENT- which hospitals & docs best for Wegener's in California, Nevada or Western US

    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?

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    elephant's Avatar
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    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..

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    Sangye's Avatar
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    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.

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    Redbecca is offline Registered User
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    Default Dr. Sharon Chung in San Fransisco

    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
    sharon.chung@ucsf.edu
    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?

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    Redbecca is offline Registered User
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    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?

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    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.

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    andrew is online now Chief, Big Kahuna, Boss
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    Redbecca
    I got the following message from a visitor that wanted to help but can't log in.

    I want to help Redbecca. Redbecca has the loved one having bad problems and was looking for hospitals & doctors in the west. I cannot help with this but I can perhaps help. Is the person taking methotrexate? I was taking
    methotrexate and had many problems. I was also twice diagnosed with pneumonia. It was finally proven to be a reaction to methotrexate. I know of others who have had reactions to it. When I was taken off methotrexate, I was fine once more! Hope this helps.
    Carolyn Landry
    Forum Administrator
    Diagnosed March 2003.
    I'm in Australia. That's why I talk funny.
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    Redbecca is offline Registered User
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    Thanks for the note. He is not taking methotrexate and I do not think he's been on that drug at all in the time that all these problems have occurred.

    So far the doctors, both in Chico and at CPMC do not think that his complications are from his Wegener's. They believe his immune system is simply so low that he's catching everything and anything and getting very sick.

    We're still on the lookout for a good Wegener's doc (by good I mean someone who has had or has a significant number of Wegener's patients) in the Sacramento area.

    Does anyone know which Reumatologists at UC Davis have seen the most Wegener's patients (or if not the 'most' then several Wegener's patients)?

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    Jack's Avatar
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    When I see a Wegener's patient being filled with antibiotics that don't work the alarm bells ring! I would suspect, as you seem to, that this is an uncontrolled flare up that needs specialist attention.
    I'm afraid I can't help with a recommendation for a doc who knows the disease.
    Hope you find one soon.

  10. #10
    pberggren1's Avatar
    pberggren1 is offline Phil Berggren, dx 2003
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    Redbecca,

    There is only one Wegs or Vasculitis consultant listed in the VF newsletter. Dr. Sharon Chung at the University of California - San Francisco, Division of Rheumatology, San Francisco, Tel: 415-514-1673

    I hope this helps. Sacramento looks like it is about a 2 to 3 hour drive from San Francisco.

    Take Care,
    Phil Berggren

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