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Thread: Complete collapse

  1. #1
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    Default Complete collapse

    About 10 days ago I lost all strength in my upper torso and couldn't even get up on my horse then a few days later I just colllapsed. I had a bad bladder infection, nodulose on my left lung, exhaustion, tracheal stenosis in the trachea area, no senses of balance and I kept going in and out of coma. I spent eight days in the hospital and it turns out there are two doctors studiying WG right here in my little hospital. =====the two interns knew all about WG and RTX and some of the other medications that >I have been told don-t exist here. =They do exist here and there is a spacial program right at the little hospital about and hour from here.I have a meeting with the WG specialists in two weeks time, so I hope they turn out to be for real. It turns out that the doctors here have just been messing up my medication because they don-t reallly understand what I have or how to treat it. I hope these two doctors are for real and really do know about WG and the medication and peoblems that goes along with WG. I will let you know after my meeting.
    My blog: Animo

  2. #2
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    I am just glad that you are okay Barbara. Was this a flare then? It sounds like these docs are the real deal and even if they don't have massive experience with Wegs I'm sure they know who to contact who does for support if needed.
    Phil Berggren, dx 2003

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  4. #3
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    Barbara, I sure hope that they are the real deal

    That would be so amazing for you and hopefully now there are just good things heading your way.

    Take care of yourself - gentle hugs to you
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Wow, Barbara... I'm sorry to hear about what you have been going through. But if that is what it takes to get you in touch with some doctors who are not only nearby but better able to treat your WG, then I guess it could be a blessing in disguise! I hope that these doctors are exactly what you have been needing for a very long time! I'll be looking forward to hearing how it goes.
    Anne, dx'ed April 2011

  6. #5
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    Hi Barbara,
    I am sorry for you for having such rough time, but I am glad that finally you have docs who knows what they are dealing with. I hope that good will came out of it.
    I am sending you my love and my praying take care and update us.
    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.

  7. #6
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    Hi Barbara, sorry to had to be sick but hopefully it brought you to the proper care that you need and deserve. Please keep us all posted as to your progress. I bet you will be a new person once they get your drugs right!
    - You can judge the character of a person by how they treat those who can do nothing for them.

  8. #7
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    I'm so sorry to hear about your hospital stay, but I am glad that it looks like you have found some knowledgeable doctors. I hope the meeting with them goes well.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

  9. #8
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    We all hope for good results for you and look forward to hearing some good news.
    Knowledge is power! Wisdom is using it to make good decisions!

  10. #9
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    Barbara, so it is so good to hear from you, I wondered where you have been and was getting worried. Sorry you were so sick but maybe a blessing in disquise. I hope these 2 drs. can turn things around for you and you are back on the saddle again..
    Life isn't about how you survive the storm, but how to dance in the rain !

  11. #10
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    Good luck with the 2 docs, get better soon
    Jolanta

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