I would go live in a cave?

September 27, 2009 at 10:47 pm

And, family, friends and others do come to the house and can ‘share’
I was most scared in the hospital where, when I was admitted, they wanted me to get the whole panoply of innoculations for the flu, pneumonia, and a couple other things- I refused and explained why- I believe no follow up on the ‘WHY’ was ever done. Yes I had ‘injuries’ BUT I’d not had something contagious while on IVIG! I was especially concerned as I’d received my IVIG just three days before.
I’ve questioned the aspect of surgery vis-a-vis infusions and my neuro has recommended a 7-14 day wait/window [but no more than 20]. But in those instances the surgery was planned. The wait is so you can benefit the most from the CIDP, and still have the IG work a bit for afterwards for any bodily ‘invasions’ of surgeries. My recent case was emergency surgery, and, only 4 days after IG infusions…all those good IG’s were likely lost in the process [it was a loong surgery]. While it’s not out of my pocket, insurance-wise? I do feel that unfortunate issues essentially wasted one precious IG dose. And, I consider ALL IVIG precious!
There is a whole HEAP of information on any IG brand’s ‘prescribing information’! Web it up and memorize the key parts about innoculations and other issues. You will be surprised at what you can learn from all that fine print? AND it’s far easier to read on the computer, as you can enlarge it to readable. As far as I know? Few if any records are kept regarding those of us on IVIG and innoculations, or, even viral or bacterial infections.
There is a lot of pressure being put on government agencies in the US to ‘deliver us from fear’ right now. The potential of an epidemic equal to the pneumonia of the ’20’s or the ‘black plagues’ is real. The numbers are increasing rapidly- really read about them. WE are the most vulnerable in some ways? But because of the IG we aren’t in others. It’s truly like gambling? We make our decisions and live with the consequences. Plain and simple.
I really wish there was MORE info on these new vaccines and all? I am sure there will be? But, I suspect WE are going to have to be more alert to BRAND NAMES of what mite be good or not. When info is clearly available. You betcha MOST docs won’t read all that fine print! Then, it’s up to US to inform our docs…w/a how about..or OH! NONONO! or whatever.
Those ‘how-abouts’? I do ’em all the time! Keeps all my docs on their toes, so to speak.
I especially worry as it was pneumonia that got me this dear gift of ‘CIDP!
Knock wood really quickly! It’s attached on your forehead.