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Thread: Ocrevus redux

  1. #21
    Distinguished Community Member Lazarus's Avatar
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    [QUOTE=BBS1951;66852]Maybe like my infusion center? People are only moving around to use the restroom.( No one watching TV luckily-- I hate TV noise--what's with loud Tvs in doc waiting rooms? GEESH...) people are usually Reading, doing internet, taking to a family member. Not much socializing amongst patients.

    Typically I read, stare off, daydream. When it gets noisier, I put on iPod and listen to favorite songs. :)

    The centers have headphones for the televisions. I bring my own. I have never heard anyone's television. These centers are places where people are supportive of each other.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  3. #22
    Distinguished Community Member BBS1951's Avatar
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    Oh wow! I wish my center was like that. Mine has lost half its nurses past month, partly due to poor pay.
    I complained to the chief RN that oversees all infusion centers hospital wide. They're aware of it. It helps that patients complain. One was so upset, he's transferring to a diff center.

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  5. #23

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    Hi - I'm gunna start infusions July 31st. I'm not doing worth a damn the past six months. Kinda makes me wonder why I've survived various events. Sorta like, what's the use. Maybe this will herald good news. We'll see...

    Tweeker
    Ya Can't Argue With An Idiot

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  7. #24
    Distinguished Community Member BBS1951's Avatar
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    What you're feeling is so understandable. Many have or are struggling with that.

    In my low moments, I remind myself that I am of use to my family and community, if only because I am kind. I am as kind to family as possible as it brightens others days. When rolling in the supermarket, I make it a point to smile at least one person and all workers. If someone offers to help, I let them because it makes them feel good about THEMSELVES as altruistic.

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  9. #25
    Distinguished Community Member BBS1951's Avatar
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    Tell us how your Ocrevus goes.

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  11. #26
    Distinguished Community Member agate's Avatar
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    Tweeker, good luck with the Ocrevus! It does sound like the best thing to come down the pike in a while, especially for people with progressive MS.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  13. #27
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    Good luck, Tweeker.

    ANN
    There comes a time when silence is betrayal.- MLK

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  15. #28
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    Good luck Tweeker - please do not forget to let us know how it goes. Hoping better days for you.
    Virginia

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  17. #29
    Distinguished Community Member Lazarus's Avatar
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    Hello SSusan,
    Your infusion is scheduled next week and I was thinking you must be anticipating it. Here's hoping good things happen. I always feel a boost in energy within a couple of days. Sure hope you do too!
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  19. #30
    Distinguished Community Member agate's Avatar
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    I'd be interested in knowing what sort of experience I'd be in for if I were to have an Ocrevus infusion. I really hope someone won't mind describing how it goes, in some detail. I'm imagining something like this:

    4 AM (?!) - Arrived at infusion location by car. Trip took 5 hours.
    5 AM - after an hour's wait, filled out paperwork as required by reception desk
    6 AM - finished filling out paperwork
    7-9 - Was taken to a room where I was set up in a chair/bed and given _____ and ____ via injection/pill and told to relax after undressing and putting on a hospital gown. Sat and watched TV

    Etc., etc. I have no idea what happens or how long it takes or how painful or uncomfortable any of it is.

    Some of us here (me, anyway) are very wimpy when it comes to giving up even a day for a medical procedure, especially one that is fairly new on the scene.

    So if one of you doesn't mind doing this, I for one would really appreciate it.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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