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Thread: pberggren memorial thread

  1. #111
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    If anyone has the private phone or email of dr. Specks please pm me asap. Thx.b
    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.

  2. #112
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    Does anyone know if Alysia got this number? I pm'd Cindy in case she has it... Don't know what else to do from here but will look online...
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  3. #113
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    Phil is not getting better. The inflamation marker is higher from day to day. I am madly scared. The docs here say that he might not survive. Already 2 days of plasma exchange with no change. How long does it takes ? We want to consult with Dr. Specks but we dont have his phone number. I sent him an email and checking around. Please, every info can help. Please pray for my sweetie. Please, God, don't take my sunshine away.....
    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. #114
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    Alysia, did you receive pm with the numbers Cindy sent? Look back in your FB messages from me I just double checked and they're there. Hoping, wishing and praying for a turnaround. Maybe it's just taking a bit of time and the plasma will kick-start healing very soon...
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  5. #115
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    Foothills should have a chaplain who can say some prayers with or talk with Phil if he's afraid or feels that would help.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  6. #116
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    OK ALysia, hang in there, I had about 5 plasmapheris treatments on consecutive days so perhaps Phil needs a bit more time, it might take time to turn the whole thing around.

    Keep tough and pass on all our best wishes to Phil.

  7. #117
    rif Guest

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    Hi Alysia

    It can take several rounds of plasma exchange, my son had over two weeks of it daily before they were confident it was showing signs of working. Hope you got those phone numbers.

    Rif

  8. #118
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    Alysia, is there a reason why you're only trying to get hold of Dr Specks and not other Wegs specialists? I recommend contacting every single one until you get through. And his doctors should be on the phone with other Wegs specialists immediately.

    Sending my prayers to Phil and hoping he can turn it around quickly.

  9. #119
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    Prayers are still coming!
    Faith.Hope.Love.
    Fighting Since 2008

  10. #120
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    This site has been shared on other threads here and on Facebook recently: InformationCanVasc. It sounds like there is some sort of "consortium" center in Calgary, and other related ones throughout Canada. On the pages of the site you can learn more about this organization and get names of vasculitis docs, some in Calgary. There is also a conference in Calgary happening Oct. 2nd! I wonder if Phil's docs are missing opportunities to talk to vasculitis doctors right there in Calgary. This is all so confusing. He's lying there in grave danger and people aren't using the resources available? I don't get it. I hope this can help in some way, that there really are docs nearby who might be able to help.

    If you scroll down on the page linked above, you will find names of docs who are "core members" in all the provinces of Canada; there are two "centers" in Alberta, one of which is in Calgary. I'm getting that these are research and referral centers, not treatment centers, but the docs who are members are certainly vasculitis docs, in rheumatology or other fields related to vasculitis, and it would seem they would have their own practices and treat patients as well as refer patients to other docs and provide information based on their expertise. Contact info is given for these docs. I'd try calling the doc listed first in the Calgary section under Alberta.
    Last edited by annekat; 09-22-2014 at 02:15 PM.
    Anne, dx'ed April 2011

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