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Thread: Greetings

  1. #31
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    Default Who should I believe ???

    I am unsure on who to believe.A few months ago I had a ct scan of my abdomen and they got my lungs in the view as well. I got a copy of the cd and the radiologists report and sent them to my reumy at Cleveland Clinic. The report said I had 4 small nodules in my lungs that were not on the previous scan. 2 -2mm and 2 -5mm in size and one looked like ground glass. Well I go back up to the clinic at the end of July ,so I called my reumy to see if I needed another scan done to see if the nodules have gotten bigger or smaller or what. When he called me back he said he was looking at my "beautiful " lungs now and saw nothing wrong with them besides maybe a little scar tissue and I didn't need a scan unless I start coughing up blood or something else happens !! Well first of all I don't want to wait for that to happen and second it concerns me that if the radioliogist is wrong about his report what else can he be wrong about not only to me but other people or what if my reumy is wrong ?? Do you guys think I should have my pcp dr. order another scan for me or let it go ??
    Life isn't about how you survive the storm, but how to dance in the rain !

  2. #32
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    Didn't you discuss this with your doctor?
    Phil Berggren, dx 2003

  3. #33
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    Hi debra,
    about the CT: in that case I would have asked for second opinion.
    another point: I read the all thread. you wrote there about the imuran: i cant take imuran (vomitting and diarehea) but the side effects of the imuran started only 3 weeks after I began it, and each time it was about an hour - two hours after I took it. so maybe what you felt was not conncted to imuran. maybe you can take it ?
    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.

  4. #34
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    Phil, I asked him (the CC dr ) when I first sent the report and cd and he said they were so small he wasn't concerned and know he's saying it looks like scar tissue ?????

    Alysia, I can't remember what happened when I took the imuran BUT if I can get by without taking all that crap I'd rather not
    Life isn't about how you survive the storm, but how to dance in the rain !

  5. #35
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    I would talk to the CC doc about that again. Who do you see at CC?
    Phil Berggren, dx 2003

  6. #36
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    Phil,I see Dr. Gary Hoffman, he is supposed to be the head Reumy there.
    Life isn't about how you survive the storm, but how to dance in the rain !

  7. #37
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    Gary is the best. I consulted with him once.
    Phil Berggren, dx 2003

  8. #38
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    Hi Ken, thank you for posting.
    My 17 year old was diagnosed with GPA at 15 when he went into kidney failure. He is treated at Children's Hospital Colorado and they do okay but I hoped he would go to college in Baltimore where we consulted with Dr. Seo at Johns Hopkins. Unfortunately, he is looking at colleges in Spokane and Walla Walla. I would love to find him a nephrologist with GPA experience in that area. Have you found any good Weg's specialists in the Spokane area you would recommend? Thank you!
    ~Erin

  9. #39
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    Quote Originally Posted by erincollard View Post
    Hi Ken, thank you for posting.
    My 17 year old was diagnosed with GPA at 15 when he went into kidney failure. He is treated at Children's Hospital Colorado and they do okay but I hoped he would go to college in Baltimore where we consulted with Dr. Seo at Johns Hopkins. Unfortunately, he is looking at colleges in Spokane and Walla Walla. I would love to find him a nephrologist with GPA experience in that area. Have you found any good Weg's specialists in the Spokane area you would recommend? Thank you!
    ~Erin
    Hi, Erin, and welcome to the forum. The post you replied to is from 2012 and we can't be sure Ken is still keeping up with the forum. I'm from Olympia, WA and unfortunately don't know of anyone in the Spokane area, but there might be those on here who do, or you might have to go a little farther for care. I'd suggest you post in New Members Introductions, you might get more response that way, and we'd love to hear more about your son and his unfortunate diagnosis and how you all are dealing with it. To do this, go to Forum at top of page, then to New Member Intro, then to Post New Thread, something like that... give it a shot, and best of luck to you and your son.
    Anne, dx'ed April 2011

  10. #40
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    Hi Erin,
    First, I am so sorry to hear of your son and the Wegener’s diagnosis. It is truly a frightening and serious disease.
    After many months of trying to solve what was going on with me I was diagnosed with Weg’s in Nov 2011. I had finally been admitted to the hospital and one of the Doctors remembered reading about this strange/rare disease in med school. Blood tests confirmed it and as it was evolving my kidney’s I was assigned a Nephrologists’. Dr Singh had treated 3 weg’s patients in the NY area before coming to Spokane, Wa. He has truly been a God send in helping me with this terrible disease. (I was approx. 71 years old when diagnosed.)
    I have been in “Remission”since June of 2012 and have been completely off the many drugs since Nov2015. By far the hardest drug for me to be weaned off was the Prednisone.
    Dr Satinder Singh is employed at the Rockwood Main Clinic in Spokane Wa. He is in the Kidney and Hypertension center. I simply cannot say enough good things about this wonderful doctor. (Although a very busy doctor).
    The address of the Clinic is: 400 E. 5th Ave, Spokane, Wa 99202 509 838 2531
    You can certainly mention my name if you so desire, if you contact him.
    Best of luck to your son,
    Ken Lien
    Last edited by KenL; 03-10-2016 at 01:15 PM.

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