Miami Girl, regarding –

August 12, 2007 at 11:38 pm

IVIG vs other options…I am with you 100%. no and’s, if’s, or but’s! It’s a scarey enuf decision and thus COMMITMENT without guarantees for the future not to mention PROPER TREATMENTS?
However, in the case of you being ‘left unattended’ during infusions? It should be a matter that you first ask your prescribing neuro about…after all…should anything happen…IT”S HIS NAME ON THE SCRIPT…therefore HE/SHE should be ‘montoring’ it all..getting ‘proper notes’ and all. Second, call the drug manufacturer? They too have a very, VERY vested interest in being sure their PRODUCT is delivered properly. I’d an experience w/a reaction…at a HOSPITAL where I’d been substituted and administered a brand different from prescribed IVIG brand…There are federal laws about notifying not only the docs but the patients about ‘changes/substitutions.
I not only called the doc, I called the mfr., I called the State medical Board, I called the FDA and well, by golly….staff got NEW training about infusion ‘reactions’. For two to three days? I even got a ‘supposed’ fee abatement [all fiction] but that that was DONE was satisfying in that I probably had one of those really bad reactions that no one wants to admit having. The updated training saved a few lives from misery tho…according to hints the hospital nurses gave me afterwards…I opted for home because I was having to wait 3-5 hours for the ‘medication’ to be mixed….I got there at 6AM and got out at 3-4pm IF I was lucky…that’s a silly, unnecessary wait.
WE have to know the proper procedures to ensure OUR own safety. Some manufacturers provide ‘kits’ that include ‘record books’ and videos… You should NOT be left alone during an infusion AT ANY TIME! But, Let the Docs, the state boards, the FDA wrestle with it all…You are merely the patient? You should not be caught in the middle of this tussle…Let the doc preserve his reputation,…or not? Since one can’t convey useful web sites directly, please PM me for all the good sources. I’ll be more than glad to share..