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Thread: pberggren memorial thread

  1. #161
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    I agree, Sangye. I know in the past Phil has mentioned some WG specialists in Canada whom he holds in high regard, and then there are the ones in the US, too. It sounds like he has enough presence of mind that he could make some suggestions about which ones of these he'd like his docs to consult with, if possible. Dr. Specks has been involved. There must be others whose attention could be gotten.
    Anne, dx'ed April 2011

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    Not much I can say other than we think of you two all the time. I wish we could receive some better news soon.

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    Quote Originally Posted by Alysia View Post
    They cant tell what is going on, if it is an infection or WG or both.
    Alysia I'm going to try and be positive here. During my time with WG I've had quite a few situations where Drs have not known what is causing various problems. But the body is an amazing thing. I believe the Drs did enough to slow down the problems I had (severe WG, renal failure, septicemia and pneumonia, all at the same time) and my positive attitude allowed my body to repair itself.
    You probably don't know how much of a difference you're making to Phil's recovery. With you being there it's giving Phil an extra reason to fight. If he slips in to a "there's no use fighting" attitude then that's when he's in real trouble. Try to stay positive and keep Phil positive.

    I don't know what to suggest about getting as many Drs involved as possible. Ideally you only need 1 WG specialist who can make quick, decisive and CORRECT decisions. You don't want a situation where Drs are waiting for other Drs to contact them or Drs can't agree on treatments, all the while Phil is just lying there waiting. Having said that, hearing other professional opinions can help to come up with new ideas. What I'm trying to say is that don't ever feel you haven't done things the best way for Phil. There is no completely correct, best way with this illness. You being there supporting him is the BEST thing you can do and you're doing it!
    Diagnosed April 1995

  4. #164
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    Dont like the possibility of progressive scaring, As Sangye said a Wegs specialist is vital and as many as possible to pool their knowledge, do they also have an infecton control specialist on the team too.

    You are both in my thoughts.

    Rif

  5. #165
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    You being there supporting him is the BEST thing you can do
    Totally agree with this.....

  6. #166
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    Quote Originally Posted by Alysia View Post
    This update is going to remain on the forum only. Please be careful that it will not leak to facebook. Phil doesnt want to make his parents scared. We had a serious talk with the ICU doc today. They cant tell what is going on, if it is an infection or WG or both. He said that it might be the lungs scaring, proggresively. In this case they cant help. I cant stop crying since that talk. Its so scary. So painful. Phil is also scared and sad. Plesse pray. If any one had any idea what it can be, please help. I asked the doc to consult and he said that he will consult with dr. Fauci. Next Igiv IV on monday.
    this is potentially disheartening news. However, they DON'T know. You must assume this worst-case scenario is NOT what is happening. It has been scientifically proven many times over now that our thoughts can affect matter and help our body's cells to heal. Tell Phil his lungs are not progressively scarring. Tell him to visualize his lungs pink, healthy, full of good clean air... I know that it's so hard not to despair, but it won't do either of you any good. I truly believe that we can will our bodies to help ourselves heal. That is not to say that it is ever one's fault if it doesn't work, but you and Phil must both try. We're all sending you healing thoughts, positive energy and prayers. Tell him to visualize all of that healing light coming his way and infiltrating his lungs, fighting back any scarring or darkness. This is the little sliver of 'healing power' (respecting the forum's non-religious nature) in each of us, and we are pooling it together for him. Soak it up... Maybe listening to a healing meditation would help? dr. Bernie Seigel has very reassuring recordings that help you to connect on a cellular level and help your healing process, I'm sure there are many others like him, maybe even someone of Phil's faith??? This type of thing has been very calming and healing for me in the scariest times.

    I will try to find contact info for someone from canvasc coming to the conference. I think I mentioned before to you that I spoke with Dr. pagneault (sp.) and he was very kind and willing to consult, maybe he is a good option . I'm not at home now but could probably find the number again.

    We are with you, God is with you, (hope that's ok to say here), praying he can make it through this and get better enough for a transplant and a somewhat fresh start! Xoxo
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  7. #167
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    With the improvement in Phil's labs, we hope that his health has bottomed out and that recovery has begun. Having said that, it looks like his recovery is going to be a long, hard climb. Good thoughts for recovery heading your way...
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  8. #168
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    Tell him - that when he gets better, he is going to be in big trouble from all of us, for scaring you so
    Also tell him to stop stressing and just worry about getting better. Hopefully the doctors and any WG specialtists can worry about the other stuff.

    This morning on facebook you said that his blood results were looking better than the last ones - this in itself is very hopeful.

    Has there been any recent talk of the lung transplant - is this still on the cards?
    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

  9. #169
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    Thank you so much from Phil & from me for your love & support & heart-warming thoughts. You give us strength to endure and to continue fighting. Phil read all your posts, I show him on my phone. Whenever he needs encouragement he asked me to show him the forum. Love you. God bless you.
    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.

  10. #170
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    Transplant is not an option now. He is too sick to suvive it. The paradox is that he had to be much healthy for it and at the same time sick enough.
    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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