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Thread: pberggren memorial thread

  1. #11
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    Best wishes for a very speedy recovery!!
    I am a strong person, but every now and then I also need someone to take my hand & say everything will be alright....

  2. #12
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    Quote Originally Posted by Alysia View Post
    *Hi all Andrew here - just hijacking Alysia's post for a second so I can add some context This thread is continued from this one: http://www.wegeners-granulomatosis.c...ggren-267.html
    I love the original thread..... page 265 or so.... it was cool ....
    I wonder, andrew, if the new thread can send notifications for friends that wrote on the original thread ?
    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. #13
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    we had couple of dramatic and scary days. I will try to copy to here the updates from Phil's page on face book and to write down what we had.....
    Last edited by Alysia; 08-25-2014 at 10:06 AM.
    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. #14
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    Phil 20 August.

    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. #15
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    so, on wednesday after noon Phil started to feel pains in the chest. I was worried maybe the lung is down again and try to tell the nurse to call the docs. I tried and I tried but the nurse in charge didn't listen

    thursday, first thing in the morning I catch his doc and asked him to come and see Phil. he ordered and cxr which shows that the lung was down
    late on Thursday evening, arrived doc who opened the valve of the chest tube, found in it somthing that blocked it, flushed it and we all hoped for better.
    next morning, the cxr showed that the lung was up again

    to be continued.....
    with Phil you should always hold your breath
    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. #16
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    Friday norning we had a meeting with a doc from the transplant team.
    this is what Phil wrote about it on his facebook page:



    I've decided to go ahead with a double lung transplant. The lung transplant doc stopped by to tell me about the whole process. Next week begins a battery of tests to choke horse. On Tuesday they draw 40 vials of blood for the blood work. I will have to live in Edmonton for 6 weeks prior to the transplant as part of the workup. There I will do physio therapy in the mornings to get into shape and see the docs and other people in afternoons. This is about as a high of risk surgery one can embark on.

    Once I am done with the 6 weeks in Edmonton then I am on the transplant list. It is like being pregnant and waiting with your bags packed. A plane would be sent to Swift once I go the call. I would always have to be ready for the call at all times.

    The surgery itself is very intrusive and intensive. My heart and lungs go on bypass machines. It takes about 10 hours. At least one week in ICU afterwards and usually 3 to 5 days on ventilator. Then another 3 to 5 weeks on average in a ward recovering. Total recovery takes about a year.

    I will have no immune system once this is done. They will shut it down completely. I will be on steroids for the rest of my life and other immuno suppressive meds like Imuran and Cyclosporine and about another 10 to 15 meds for as long as I'm alive.

    After I get out of hospital after the surgery I stay in Edmonton for another 3 months for more physio therapy and follow up with docs, etc.

    Then after that I will have at least monthly blood work with at least 6 visits a year to the doc in either Saskatoon or Calgary or Edmonton.

    I will need a support person with me the whole times I will be in Edmonton. It is not an easy thing to go through, especially post surgery.

    The lung doc today figured I was status 2, meaning I was the sickest of the sick to get a lung transplant.

    Average wait time on the list is a year. One in ten die waiting for lungs.

    The most common complications are infections, acute rejection and blood clots.

    Given my young age he figures I should get another 10 years out of new lungs, possibly more.

    Most of the donor lungs come from car accidents and strokes.

    I will post again once I learn more. But first the pneumothorax must be resolved.
    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. #17
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    continue:

    Saturday: Phil started to feel sever short of breath. this time the nurse in charge was very caring and he called the docs. the cxr showed that the lung collpased again. so late at night he went for another chest tube. number 6. this morning the cxr showed that the lung is back up. thanks God.
    please continue to pray. thanks for being with 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.

  8. #18
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    Quote Originally Posted by Alysia View Post
    I love the original thread..... page 265 or so.... it was cool ....
    I wonder, andrew, if the new thread can send notifications for friends that wrote on the original thread ?
    Nope they won't but they will have been notified of my last post with the link in it
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  9. #19
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    you are in my prayers, and I hope to hear some good news soon.
    Mike
    If you can't be positive be optomistic.

  10. #20
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    Quote Originally Posted by Alysia View Post
    continue:

    Saturday: Phil started to feel sever short of breath. this time the nurse in charge was very caring and he called the docs. the cxr showed that the lung collpased again. so late at night he went for another chest tube. number 6. this morning the cxr showed that the lung is back up. thanks God.
    please continue to pray. thanks for being with us.
    Good to hear that the lung is back up.
    You sure went through a lot, lately.

    How is Phil's breathing now?
    Living with WG/GPA since june 2010...

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