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Thread: pberggren memorial thread

  1. #431
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    As some of you noticed I haven't really properly accepted Phils death yet. Phil and I talked very often, instantly bonding over being Canadians a few years ago... I am so sad. I was having such a horrible day the day he passed... Then I found out he passed and I was inconsolable. My husband knew all about Phil and he is so sorry too. Phil always had all the answers. He was just real.

    I think about Phil almost every day. We had many plans. He wasn't supposed to go.

    Alysia, Phil loved you so much. I remember how excited he was when he said he was going to pick you up at the airport for the first time. I am so happy you guys got to spend the time together that yous did.

  2. #432
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    Quote Originally Posted by mrtmeo View Post
    I have seen improvements with others and in the literature and other testimonies thru out a year after treatments, yet, her nephrologist seems to think she will not have any further improvements with her kidney function when she is only in the 5th month from start of treatment.
    When she finished her treatments, her nephrologist said he could save her kidney function and he expected it to return to near normal creatinine of <1.5.

    That never happened and I don't think the Mofetil is helping, but won't know for sure for a couple weeks when she gets blood work again.
    He also, doesn't think she can handle the ctx even tho she had a one week pulse dose with no problems.
    He wouldn't do plasma exchange either.

    He claims to have 30 years experience with vasculitis, but I don't see it.
    I'm sure it is because she 76 years old with copd, but I believe every life is worth every possible effort regardless of age.
    I think I need a 2nd opinion.
    I am sorry Blake for that tough and scary time you are going through. Its more hard to be the catetaker then the sick one. Knowing both, I can tell....
    Insist on second opinion. I learned never to trust any doc. Allways check and challenge. Sending hugs and prayers.
    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.

  3. #433
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    Quote Originally Posted by annekat View Post
    Of course, you are absolutely right. He is even in the part of town closest to me. Part of me is afraid of what the guy currently treating my WG will say, which is of course stupid. He can't argue that a person with WG should be seeing a rheumy. I seem to be having a little flare every winter, and it would be nice to have a new doc before then. Appointments with docs here seem to be easy to get fairly soon; maybe there are a lot of them per capita, I don't know. But I should look into it so I know what the deal is. People on the forum have been telling me for YEARS that I should find a new doc. And BTW, congrats on taking that step on your mom's behalf.

    BTW, lets remember that this is Phil's thread and maybe we are wandering off topic from that a little....
    Phil allways liked to ask others how are they doing on his thread here and on his posts on facebook. No matter how tough he had it, he was allways caring for others. And for me.
    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. #434
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    Quote Originally Posted by carriej22 View Post
    As some of you noticed I haven't really properly accepted Phils death yet. Phil and I talked very often, instantly bonding over being Canadians a few years ago... I am so sad. I was having such a horrible day the day he passed... Then I found out he passed and I was inconsolable. My husband knew all about Phil and he is so sorry too. Phil always had all the answers. He was just real.

    I think about Phil almost every day. We had many plans. He wasn't supposed to go.

    Alysia, Phil loved you so much. I remember how excited he was when he said he was going to pick you up at the airport for the first time. I am so happy you guys got to spend the time together that yous did.
    Thanks Carrie. Your words mean a lot to me
    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.

  5. #435
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    Thank Marta. It means a lot to everyone here. And I guess I know what Phil say about this from his good place in heaven, he say: I allways love you Marta. http://weggiesunite.blogspot.co.il/2...-gone.html?m=1
    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.

  6. #436
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    Hi Alysia,
    I sure hope things are getting better.
    The memory of you and Phil will be embedding in my brain forever.

  7. #437
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    I am so deeply sorry to hear about Phil. He was one of the first people to welcome me here. Phil was a great guy and we are all feeling a deep sense of loss without him. Thank you for being there for him, Alysia. I know that meant more than anything to him. I'm sure he felt loved.

    "Life's greatest happiness is to be convinced we are loved." - Victor Hugo

  8. #438
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    I remember when Jack died, it hit me straight away and I was crying over the keyboard of my computer, inconsolable.

    Phil being dead just doesn't seem real or possible. I am finding I so hard to believe. Me and Phil didn't always see eye to eye but I know he was a kind soul who was always there for people. I wish he were still alive now, he always seemed to have a positive spin on things.

    Alysia I kinda missed you and Phil falling in love while I was absent from the forum but oh my, did you make a cute couple.
    "I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack

  9. #439
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    Quote Originally Posted by mrtmeo View Post
    Hi Alysia,
    I sure hope things are getting better.
    The memory of you and Phil will be embedding in my brain forever.
    Thank you. things are not better but worse because I miss Phil more and more and more all the time.... accumulating... so much love that I cant give him anymore.... so much pain from missing him.... so much longing.... sweet memories that make me smile and cry at once.... and painful memories from his last days that make me cry and cry....
    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. #440
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    Quote Originally Posted by lag713 View Post
    I am so deeply sorry to hear about Phil. He was one of the first people to welcome me here. Phil was a great guy and we are all feeling a deep sense of loss without him. Thank you for being there for him, Alysia. I know that meant more than anything to him. I'm sure he felt loved.

    "Life's greatest happiness is to be convinced we are loved." - Victor Hugo
    yes. he felt loved and he loved. the biggest love in the universe. ever. thank 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.

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