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Trisha’s Misdiagnosis Story

Here’s the full-blown version of Trisha’s misdiagnosis story.

Since that fateful odyssey, she has worked with other patients who have SPTCL.  You can read more about them at this website.

And what’s Trisha doing today?  You can learn what she’s up to here.

 

16 comments

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    • Diane on May 14, 2007 at 4:06 pm

    Can an advocate interfere with the families choice in treatment??

    • Dad on May 26, 2007 at 12:21 am

    Just getting caught up on your blogging — at 1:20 Saturday morning.. find it very interesting…. still shudder when I remember those days iin the summer of 2004 .. and beam with great pride when I ruminate on your courage and steadfastness in meeting the challenges….

    …and, oh yes, happy, happy first anniversary…

    Dad

    • Karl Schaefer on July 23, 2007 at 1:41 pm

    Hello Trisha, Wow, a great outcome for you. Praise God! In 1987 I was diagnosed with low grade Non-Hod Lymphoma (so they said). I took 6 month of chemo, then 1 month of radiation. In 1989, they said it was in my spleen (so they said) and my spleen was removed. In 2000 a mass appeared on my collar bone, and it turned out to be hi-grade non-hod lymphoma (so they said) and I took more chemo and radiation. In 2005 I had a lump in my groin area, and it was removed and was low grade non-hod lymphoma (so they said). I took 6 months of chemo. In 2006 they administered Rytuxan every two months ($10 grand a pop) and will continue that in 2007 which I’m now doing. Each time something like this re-occurs, I just take their word for it. Something in the back of my mind for the last 20 years keeps nagging me to think, “did and do I really have lymphoma”. How can I really check this out. If I challange this with my oncologist, I’m afraid he will say, “well, just go somewhere else”. I just continue to wonder…………
    Thank you for reading my story
    Karl Schaefer

  1. Karl,

    Thanks for writing. You need to get yourself to an academic medical center and ask them to review your records to see if these drugs can help you. Here’s a list of academic medical centers.

    http://services.aamc.org/memberlistings/index.cfm?fuseaction=home.search&search_type=TH&state_criteria=ALL

    A second opinion is VITAL. And they can provide it.

    Trisha
    this reply references this blog post:
    http://epablog.wordpress.com/2007/07/23/lymphoma-patients-secret-option/

    • A. Michael Carieri on August 11, 2007 at 12:16 pm

    I’d like to tell you about an incident whereupon a vent-dependent patient enters an ER, is completely ignored for
    over 20 minutes by the ER staff, and then after 20 minutes
    is examined and pronounced dead
    Their reason for not helping the patient at all whatsoever?
    They felt that the patient was “beyond hope” upon arrival
    to the ER, so they decided not to try to help the patient.
    The patient had no DNR. The patient was not DOA.
    The patient had every right to live. The ER staff “chose” not
    to give the patient a chance to live.
    This seems to go beyond the limits of malpractice and
    negligence. It presents the objective presentation of the
    act of premeditated murder.
    Your thoughts would be most appreciated.

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