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Thread: Wegener's sucks... (in case someone didn't already know)

  1. #21
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    Quote Originally Posted by Birdie View Post
    "Aortic valve disorder" is the only official sounding diagnosis I've got. From my limited understanding it's a leaking valve. It was not my main concern at the time, not even close to a priority if you know what I mean.

    I also had a couple bouts of something I have no name for. Heart rate increases for no reason, blood pressure goes high, feel a pounding in the right chest, neck and head. Happens five or ten times a week for maybe ten minutes then calms down. This came up twice for a few months each time, then stopped happening. Did all sorts of tests but by the time he put me on a 24 hour heart monitor the problem had gone. It's been a year since the last occurence.
    Birdie, I had the same thing happening with my heart beat. Mine started one day and did not quit. Heart rate kept jumping from normal about 60 beats per minute to 150 beats per minute. The cardiologist finally determined it was tachycardia. This too can be caused by Wegener's. It can be controlled with medication and is a non=life threatening disorder of the heart.
    Karen; dx'ed April 2014

  2. #22
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    Quote Originally Posted by kaysee View Post
    Birdie, I had the same thing happening with my heart beat. Mine started one day and did not quit. Heart rate kept jumping from normal about 60 beats per minute to 150 beats per minute. The cardiologist finally determined it was tachycardia. This too can be caused by Wegener's. It can be controlled with medication and is a non=life threatening disorder of the heart.
    Ouch, sounds worse than I had. I gotta go look up that diagnosis. Thanks.

  3. #23
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    Quote Originally Posted by Birdie View Post
    I'm trying to navigate the insanity of applying for Social Security Disability. If that doesn't get approved I'm really in trouble.
    Anybody remember the dance performed by little yellow bird named Woodstock?

    woodstock.jpg

    SSD was just approved.

  4. #24
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    Congratulations, Birdie!
    Linda
    dx September 2013

  5. #25
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    Quote Originally Posted by LCL2013 View Post
    Congratulations, Birdie!
    Thanks. My whole life has been centered around this since WG diagnosis, almost as big a concern as WG. I can go back to eating again now that I'll have money coming in. Even could get the leaking roof replaced... maybe.

  6. #26
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    Woohoo! I'm so happy for you, Gary!!!

    And I apologize for not sending you any pottery pics yet. I've been hit with lots of petty little BS lately and am just worn out. I will get to it when a few more spoons materialize.
    Anne, dx'ed April 2011

  7. #27
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    Quote Originally Posted by annekat View Post
    Woohoo! I'm so happy for you, Gary!!!

    I will get to it when a few more spoons materialize.
    Thanks Anne, and YiPeee...

    But... I'm certain I've seen pottery spoons somewhere. Just make a few.

  8. #28
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    Quote Originally Posted by Birdie View Post
    Thanks Anne, and YiPeee...

    But... I'm certain I've seen pottery spoons somewhere. Just make a few.
    Ha, ha. Yes, they exist. Will give it some thought. But every time I made a spoon, I'd be using up two, is the trouble....
    Anne, dx'ed April 2011

  9. #29
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    Wow Gary what an awful ride you have had and you are still managing to smile. You are a true inspiration. I am sad you lost your wife and top of everything. Thank you for helping me xx

  10. #30
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    Quote Originally Posted by Aylasnan View Post
    Wow Gary what an awful ride you have had and you are still managing to smile. You are a true inspiration. I am sad you lost your wife and top of everything. Thank you for helping me xx
    Some things kinda suck, you just figure a way around them and move on.

    So you've gota biopsy tomorrow... bring a list of questions cuz you won't think of them all when you're there and you'll need the paper to take notes.

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