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Thread: Shortage of IVIG—infusion cancelled

  1. #11
    Distinguished Community Member Sunshine's Avatar
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    Very sweet funnylegs. The issue is very complex, true shortages, shortages due to Pharma wanting more profit and slowing production, more people using ivig off label than ever before and more using ivig on label.

    I heard that the hospital is trying to arrange for home infusion. I don’t know how that makes getting the drug any easier. I will wait until its settled.

    Seems sketch to do it at home, what with past reactions...I am all ears though. If I could just get it once a month, I can limp along with it that way.

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  3. #12
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Sunshine)))))) ~

    Just FYI ~ Jonathan's home health nurse (and now Jim's nurse) gives IVIg infusions at home with no problems. You'll want to make sure that the nurse is a qualified infusion nurse with plenty of experience in IVIg infusions.

    Most likely, the nurse will do an intake questionnaire with you to sign you up for home health care. At that point, you can tell the nurse your specific requirements for the infusion, so that you're both on the same page.

    It might be easier for you to have the infusions at home, as it will save you travel and walking.

    Something, which might be worth considering.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  5. #13
    Distinguished Community Member Sunshine's Avatar
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    I wonder why the home health nurse can get the liquid, but not the hospital. Its not a done deal yet.Doc said to wait while he Meets them.

    As long as its safe, and they have a way of handling it if i get a severe spasm, I am fine at home.

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  7. #14
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by Sunshine View Post
    This quote is hidden because you are ignoring this member. Show Quote
    I wonder why the home health nurse can get the liquid, but not the hospital. Its not a done deal yet.Doc said to wait while he Meets them.

    As long as its safe, and they have a way of handling it if i get a severe spasm, I am fine at home.
    I had one dangerous reaction in the 8 years I did IVIg. My nurse had forgotten to give me any of the 3 premeds I take before the infusion. An hour into the 7 hour infusion I had trouble breathing, could not speak and there was a big panic.
    They shut it down and it took an hour before I was normal again. We realized the premeds had not been given and they administered them and went on with the infusion. I would also encourage you to know about the administering nurse.
    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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  9. #15
    Distinguished Community Member Sunshine's Avatar
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    TY Laz. How awful for you.

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