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Thread: pberggren memorial thread

  1. #101
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    Wish I had some info for you, but I don't have any personal experience with plasma exchange.
    ~ Bob

  2. #102
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    I don't know about plasma exchange either, I'm just chiming in to say I'm thinking of and praying for you all the time. I wonder why they stopped the Imuran? That has been the best one for me (unless it's causing the headaches), but I know we're all different. Both my rheumy and ENT were surprised that it helped subglottic stenosis, which usually requires repeated dilations. So I wonder whether it might do good things for lungs too. Might be worth asking the docs? I guess because it suppresses the immune system and he needs to fight the infections.... Tell Batman we all love him and I'm sending healing prayers and love to both of you...
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  3. #103
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    If plasma exchange is same as plasmapheresis this can prove very beneficial as they continue it until all the bad cells are eleminated from the blood which can take several transfusions, My son had this when he was initially admitted to ICU, the specialist renal dialysis nurse came to his bedside with portable machine each day. I am sure this gave the doctors time to consider best form of treatment to save his life. Although my son was heavily sedated on life support which they had to do because of lung haemorraging I was assured the whole thing was painless. It looks worse than it actually is.

    Sending you both my best wishes and prayers that this will give Phil the same result it gave my son.

    Rif

  4. #104
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    I think your guess is correct, Lisa, that they stopped the Imuran because it is an immunosuppressant that will interfere with him fighting the infections. I am not clear on whether they know for sure that he is having a WG flare.
    Anne, dx'ed April 2011

  5. #105
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    Yes, plasma exchanges are often referred to as plasmapharesis. I had umpteen of them initially (they stopped counting units of plasma at a 100 plus units) and think it played a large part in my survival. I think Don had some too. It is sort of like getting an oil change as they remove the old plasma and put in new fresh stuff. I slept through many of them and expect Phil will too.
    Best wishes for better health for Phil and less stress for Alysia

    Quote Originally Posted by rif View Post
    If plasma exchange is same as plasmapheresis this can prove very beneficial as they continue it until all the bad cells are eleminated from the blood which can take several transfusions, My son had this when he was initially admitted to ICU, the specialist renal dialysis nurse came to his bedside with portable machine each day. I am sure this gave the doctors time to consider best form of treatment to save his life. Although my son was heavily sedated on life support which they had to do because of lung haemorraging I was assured the whole thing was painless. It looks worse than it actually is.

    Sending you both my best wishes and prayers that this will give Phil the same result it gave my son.

    Rif
    Knowledge is power! Wisdom is using it to make good decisions!

  6. #106
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    Quote Originally Posted by Hammy8241 View Post
    Gosh that boy is greedy One problem not enough ehh? Mind you, if I got you to come and hold my hand...

    Give Phil my regards Alysia and bring that smile back to his face and take care of yourself too. xx
    I was really shocked and surprise to see Jack's avatar on a new posting as seeing it reminds me of Jack. I bet others did a doubled take too when they first saw it.
    Knowledge is power! Wisdom is using it to make good decisions!

  7. #107
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    Yes I can verify Drz's account of plasmapheris as I had numerous treatments when I was first admitted to hospital. Yes it looks mighty weird what with the machinery and miles of tubing but my experience was totally pain free and took several hours per treatment.

    It certainly turned my health around, so much so that they commented on the fact that they had never seen such a recovery, especially with regards to my lungs.

    So Alysia, I would take a deep breath and help Phil along this new path, It might not be the total answer but I always say as long as you have options you can live in hope.

    Tell Phil to hurry up and get well, as the damage to my knees with all this praying is crippling me!

  8. #108
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    So pleased your with him
    Prayers & love from Worcestershire - u k


    Sent from my iPad using Tapatalk

  9. #109
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    Hope you're doing well.
    I was initially on dialysis Mon, Weds and Fri. Then Tues and Thurs was plasmatherisis days. Both were painless.
    Dialysis mimics the filtration of the kidneys. I was told my plasmatherisis worked by removing blood, spinning it at high velocity which separates the plasma from the rest of the blood. New plasma is "pumped" into your bloodstream at the same time. The new plasma was in glass jars and looked clear, but slightly yellow. They're about a pint in size and I think I went through 3 each session.
    Diagnosed April 1995

  10. #110
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    Has anyone heard anything this morning?
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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