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Who’s Trisha?

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16 Responses to “Who’s Trisha?”


  1. 1 justordinary January 25, 2007 at 10:52 am

    Absolutely amazing story! Thank goodness you do not have cancer.

    I am in shock too though by how they tried to convince you it was cancer and was pushing for chemotherapy! Very frightening indeed. Ever thought of having a lawyer take a bite out of them for that?

    I am so glad to have someone like you out there fighting for patients who may face the say dilema.

  2. 2 DJSmd February 16, 2007 at 3:01 pm

    I am so sorry to say, that as a Family Doctor of 17 years(just quit 3 months ago) your story is not really amazing or startling. I am ashamed to say it is actally somewhat common.
    I did my best to be accurate, careful, thoughtful, and considerate. I’m sure I fell short at times.
    I did my best to encourage that in my colleagues. They fell short too.

    I have come to believe there is a force behind this mess of a “health care” system.( I call it the Medical-Industrial Complex). And I believe it reflects the seamier side of the American character. Greed, self interest, cynicsm. I wish the medical community(of which I still feel a part, barely)had some moral outrage at the direction we seem to be headed. But their focus is too near.
    Best wishes.

  3. 3 milette February 24, 2007 at 5:03 am

    your story have bring back memories of my experiences with doctors. before i was diagnosed with lupus, i got high fever, rash, cough, throat problems, joint pains etc. I went to four different doctors. At the time I have fever, throat problem and joint pains 1st doctor diagnosed it with flu and gout athritis. After a few weeks, i did not get better. I went to another one. This time I have a bad cough that the doctor ordered XRAY on me. And based on the XRAY result told me that I have pneumonia. The doctor gave me antibiotics and many meds. Until it came to a point that I lose half of my weight and still sick and got rushed to the hospital. Fortunately (or unfortunately) my malar rash appeared. Which gave the doctor in the hospital a clue on what they are dealing. But the diagnosis came after a week. Although, they have known my sickness, they have assigned a nepro to check on me. She was no big help to me. All she did was to increase and decrease my prednisone and did not do any of the treatment i have read on the internet. It came to a point that she declared me as prednisone dependent for life and told me to undergo kidney biopsy. Because of that I went to search for other doctor. Which is painful on my part because some doctor have told me that I cannot be cured. Luckily, God made a way for me to meet my rheuma now. I would have wanted to go back to those doctors who have told me that I cannot be cured. Yes, they are right I am a LUPIE for life but I can be put to remission to enjoy life. Now, I am happily married with a growing beautiful baby. I just hope you can reach out to a lot of people and may you story inspired those patients to seek for knowledge of their disease.

    Can I ask your permission to link you on my blog. Thanks.

  4. 4 Diane May 14, 2007 at 4:06 pm

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

  5. 5 Dad 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

  6. 6 Karl Schaefer 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

  7. 7 Trisha Torrey July 24, 2007 at 8:06 am

    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/

  8. 8 A. Michael Carieri 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.

  9. 9 Jacqueline L. Jones August 27, 2007 at 8:52 pm

    You learned a very important lesson that I also learned the hard way. Always review your medical records. Doctors misread tests and omit items that are discussed during appointments. Sometimes they say one thing and write another. I didn’t realize the inaccuracies until I applied for disability payments without first reviewing the records I sent to document my claim. It didn’t end well.

    I thank God that you had the courage to ask questions and seek advice from elsewhere. Many people don’t. Thanks for sharing your story.

  10. 10 Deirdre September 9, 2007 at 4:43 pm

    Hi – and thank you! I too have had SEVERAL diagnosis which I have challenged only to find out that the Doc’s were wrong. I am not suggesting that ALL doc’s are wrong but many have lost the interest in treating the person and have become a partner with the insurance companies! Good work.. but please also inform people here that there is a mode (and I experienced this myself ) whereby they can go through a process and have the physician sanctioned by their State Boards… now of course you already know that the Boards are mostly policed by themselves and so most severe concerns are answered by a slap on the wrist.. it took me 4 years but I was successful!

    One more think if you please DCIS.. non-invasive breast cancer (it use to be considered a precursor now almost an absolute finding of potential cancer) – I believe women are being diagnosed with this “‘cancer” when the medical establishment doesn’t even know WHAT it really is. Mine was not found with mamograms (which I believe are outdated and only used because they are CHEAP) my DCIS was found using an MRI. Women, if you are at high risk insist on an MRI if you have insurance! Ir DCIS IS cancer it is the earliest stage of cancer and has the most hope for us! Because of fear instilled by the medical community I went along EVEN having had other experiences of doc’s who proceeded without regard for the patient and more regard for their pocket book!
    Doc’s have you forgot “first, do NO harm”????

    Thanks for your work here – and please keep it up!

  11. 11 venus Hammack October 4, 2007 at 8:38 am

    Deployment infections coming to the hospital near you.
    A rare drug-resistant bacteria is becoming more common in areahospitals, due in
    part to military personnel bringing it home from Iraq, local health experts
    believe.
    The bacteria, Acinetobacter baumannii, is not a threat to healthy people.
    However, officials say it can be dangerous for people who are already ill and
    have weak immune systems, because it causes wound infections, pneumonia and
    bloodstream infections that can lead to death.

    Health experts don’t know how much returning soldiers contribute to the
    bacteria’s spread. But they all agree the bacteria is spreading.
    No one, including state and federal health agencies, is tracking the number of
    people who have become sickened with the bacteria.

    “There’s no question that Acinetobacter baumannii caused a challenge in military
    medical facilities,” said Dr. Arjun Srinivasan, a medical epidemiologist at the
    CDC.

    “Anecdotally, we are getting calls from health-care facilities across the
    country that are reporting more cases,” he said. “These reports are becoming
    more common.” There are more deahts.

  12. 12 bill October 16, 2007 at 1:14 pm

    Doctors make mistakes all the time as they are human. Your story is not unique. If your anger still directs your decisions and your disdain for the medical community persists, I would recommend a naturopath or chiropractor. I would reserve your visit to these individuals only for dire life-threateniing emergencies. Try this approach and your anger may dissipate.

  13. 13 Claire Pickman November 9, 2007 at 6:51 pm

    My husband has been diagnosed with a GBM that has been operated on. He is presently going through radiation and chemotherapy. You never mentioned what treatment Glen chose. CFould you put him in touch iwth us. In my opinion networking helps tremendously. The more people you talk to the more information you receive and as a result you can then make a more inteligent decision on the course of action. i would very much like to hear from Glen and how he is doing. You may provide him with my email if he is willing to communicate with us. Thank you for your work. It is so important and if you need any help let me know. I have a background in consumer education.
    Best Regards, Claire Pickman

  14. 14 david January 6, 2008 at 11:51 pm

    we have started a blog site on medical news that you may be interested in linking to your site. we would also consider linking your site to our site. the first message may not have had a functioning email address, forgive the duplication.


  1. 1 The Misdiagnosed Patient » AlignMap Trackback on March 21, 2007 at 4:31 pm
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