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Thread: pberggren memorial thread

  1. #171
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    Is that a permanent thing or he needs to get healthier to make it an option again?

    Tell Phil I'm hoping he'll see some improvement soon.
    ~ Bob

  2. #172
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    blood tests continue to get better each day. But my sweetie is not feeling better. He is working very hard to breath all the time. He can almost only work on breathing. Nothing else. Eats almost nothing. With feeding tube. He is exhausted and sweating a lot all the time. Its hard for him to talk but he is very seeet and kind when he does.
    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. #173
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    The ICU doc said today that he thinks that it is not WG flaring and that the treatment for WG made things worse, like more hard to fight infection, which was there for sure. I am not sure that its not WG activity. I think that things started to get worse and this is why they added the WG treatment. I even wonder if the hole in the lung that caused the pneumothorax was not wg-made, like the hole that we have in the saddle nose ??? I dont know.....
    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. #174
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    Bob. He needs to get healthier, to pass lots of examinations and to do 6 weeks of excercises b4 he can be on the transplant list.
    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. #175
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    Thanks for the updates. I don't know his Facebook page, in fact I don't use Facebook, so this forum and your posts are the only way I can find out how he's doing.
    I know it must be worrying when he's not feeling any better, but it's going to take quite some time. Improved blood results are probably the best we can hope for at this stage and fortunately that's what's happening.
    Diagnosed April 1995

  6. #176
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    Quote Originally Posted by Alysia View Post
    Bob. He needs to get healthier, to pass lots of examinations and to do 6 weeks of excercises b4 he can be on the transplant list.
    I'll pray that it happens.
    ~ Bob

  7. #177
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    Igg today is lower. Still they didnt give him Igiv IV and they didnt even bother to tell me why not. Very frustrating and scary. I am asking that a wg expert will come. So far nothing. Cant they understand the dread ? My sweetie is sleeping almost all the time. Today and yesterday. I dont know what it means. I am still trying to understand this Igiv treatment. Every info is welcomed. Thanks for being with us. Love 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.

  8. #178
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    Hi Alysia,
    My prayers are with you both.

    It is my understanding that IVIG is to give the person igg antibodies when theirs are too low for fighting infections, but maybe someone else can clarify.

    Also, sleep is necessary for healing, so all the sleep a person can get is best.
    It's hard to get sleep in the hospital. REM and slow wave sleep is where the body does the repairs.

    Here is more info on sleep and vitamin D by Dr Stasha Gominak.
    Videos | Sleep, Chronic Pain, and Headaches
    Last edited by mrtmeo; 09-30-2014 at 10:28 AM.

  9. #179
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    Sleeping in the ICU is very difficult due to the constant lights and noise. He might just be needing extra sleep because he hasn't gotten enough. mrtmeo is right-- sleep is necessary for healing. Just be there with him and that is enough right now, Alysia.

  10. #180
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    I'm not familiar with IGIV treatment but your past post mentioned he was exhausted from trying to breathe so sleep may be the best therapy for him right now. I think medicine is very frustrating in that it is not an exact science and every doctor has a different opinion as to what is the best or correct treatment. Keeping both of you in my thoughts and prayers that each day will get better. Take care of yourself also, and remember, the darkest hour is just before dawn.
    Karen
    We must let go of the life we have planned so as to accept the one that is waiting for us.
    Joseph Campbell

    When sleeping women wake, mountains move.
    Chinese proverb

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