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  1. #11
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    Hi Ann

    Thank you for your post, i am learning alot from you guys, as i start this treatment, i am two months in and still it feels like i am grabbing everywhere trying to understand it all better. I do not know what my creatinine counts is.... The dr only told me that my C-Anca was 10.. But when i see him on the 27th i will aks him about that, is all drs like mine? They do not tell me much and try to avoid my questions....

  2. #12
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    Quote Originally Posted by Marli Hattingh View Post
    They do not tell me much and try to avoid my questions....
    I would seriously start looking for other docs if they avoid your questions. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  3. #13
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    If they said nothing about your creatinine, it s probably OK, but it is one of the things that must be watched every time. A lot of us don't have kidney involvement, but WG can change its mind at the drop of a hat, and if your creatinine went up over the normal range, even a little, that would be a big concern. In 5 years, mine has never been above normal range.
    Anne, dx'ed April 2011

  4. #14
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    Quote Originally Posted by Marli Hattingh View Post
    Hi Ann

    Thank you for your post, i am learning alot from you guys, as i start this treatment, i am two months in and still it feels like i am grabbing everywhere trying to understand it all better. I do not know what my creatinine counts is.... The dr only told me that my C-Anca was 10.. But when i see him on the 27th i will aks him about that, is all drs like mine? They do not tell me much and try to avoid my questions....
    I have seen worse docs and better ones... WG is serious enough to ask your dr. To give you all info, explanations and tests needed. You also deserve to ask him to consult with wg experts if he is not an expert, if things are complicated, if you want a second opinion etc. I guess that in South Africa, like in Israel, there are only very few weggies and most docs are ignorant. So it is perfectly ok to ask him to consult about your case. My WG dr. Consults with prof. Jayne in the UK, who is the wg dr. Of some friends here in the forum.
    My beautiful Phil used to say that after all we need to be our own best docs.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  5. #15
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    Here is one of My beautiful Phil's posts about being your own best dr. :

    FB_IMG_1465985432195.jpg
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  6. #16
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    You have to be able to ask questions and get all of your questions answered. It is your life and your health on the line. When I first began the journey of this illness about forty years ago I was blown off by docs who didn't want to answer questions and because I was shy it almost cost me my life.

    For my part I do a lot of thinking about my appointment ahead of time and write down my questions and organize my thoughts. I appreciate that docs are busy and often pressed for time.
    Of course , in the course of the visit , other things will come up and then you will have questions about those things.

    I remember a turning point for me was a doctor getting up to go because he was in a hurry and I said "We are not done yet I have more questions". He was not happy but sat down and we finished my questions.
    This disease has been a crash course in assertiveness training for me. I am lucky that now I have docs that are really good about wanting to answer my questions.
    Still, if I get a new one that waffles - I bring the hammer down on MY appointment- "We are not done yet I have more questions"

    Another improvement in this area has been email. I am able to email my doc with questions and get a response a few days later. I work very hard to not abuse this privilege as I know it takes a lot of time for them to go through emails. Also , it helps a lot to have this group who can answer many, many questions- often better than some docs.

  7. #17
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    Quote Originally Posted by Alysia View Post
    Here is one of My beautiful Phil's posts about being your own best dr. :

    FB_IMG_1465985432195.jpg
    This was good advice I got from Phil shortly after I joined this forum. I was in a nursing home at the time working on recovery things like learning to walk again. I had just been transferred from a hospital where I spent three months just trying to survive. My last reply to this message seems to have disappeared so I will try repeat it.

    i learned to follow my lab work and the doctors educated me on what tests were important to monitor my progress. I got copies of my results and stored them on my Ipod in a medical record program. I found other doctors I saw often appreciated this info especially on an ER visit.

    I do get some updates on research from newsletters like the Vasculitis Foundation and Association for Rare Diseases and a few medical email lists. I generally rely on my doctors for pertinent info on research in this area. My treating doctor often attends the conferences and my consultant often is presenting on his research in this area at the conferences. And most important new developments in this field often end up posted here as we have some very sharp and knowledgeable here on this forum.
    Last edited by drz; 06-18-2016 at 02:35 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

  8. #18
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    Thanks a lot for sharing, drz ♡♡♡
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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