I receive infusions for 2 consecutive days

September 27, 2007 at 10:52 pm

each month…at a dose that is hier than many here…I’ve not had much by way of explanation by my doctors, but I do know I’ve more than one raging set of immune going on, and so does he. I am grateful for what I receive and it keeps me from the wheelchair and able to move about some.

When I was first offered the IVIG option [steriods were out due to other issues {WHEW?}] and it was the IG or plasmapheresis..I read and read and read just about everything available for ‘free’ on the ‘net’ and realized that these options would probably be or require a commitment for life. I was soo miserable that I chose the lesser [and was able to choose?] of the ‘invasive’ procedures -being IVIG. As Long and you know of and learn HOW it should be done/administered to you properly and the why’s behind it all, you should be OK, Getting that information is harder. When I had infusions in a top-rated hospital, I quickly realized that not one patient was being informed about anything, regardless of whatever infusions they were receiving. When I had one, just one…severe reaction…well, let’s just say that my docs knew, my state medical board knew, the IG manufacturer knew as did the FDA…I wasn’t at fault..I showed up for what had been a safe procedure? and within an hour got what was probably the a-meningitis thing…NOT ONE on staff knew what to do other than ‘discontinue’ infusing and ‘let me drive home’…
[B]Knowing about safety[B][/B][/B] and how infusions should go, and when something goes maybe off? to SPEAK UP CLEARLY [not that you really can?] not only saves your life, but others.
It is a commitment, but the thing is, IF you can get it, and insurance helps [folks on Medicare are going thru lots of awful problems as CIDP is considered OFF label for an ACQUIRED disease rather than hereditary] Just know that what you get is very precious and that with this good stuff, you can have a life. I hope this all helps…