Monica Lara Is your IVIG….

June 10, 2007 at 10:24 pm

scheduled yet? It sometimes takes about 2+weeks to get all the paperwork done to schedule your infusion….[get insurance clearances and approvals/schedule times for infusions and be sure the IVIG is available to be infused] Once you are in the ‘system’ things usually go like clockwork. If there are no real bad side-effects, be sure to start and schedule your next appointments ASAP after you see your neuro…who will probably want to do extra blood tests that make sure no problems are happening.
I agree with Limekat, wear very comfy clothes! While she gets constipated, I get the opposite effect and well, try to quickly pull down pants etc with an iv in one arm and either a pump on a pole or a portable one in a tote bag without twisting the catheter itself! Takes time and practice! Maybe a little planning too, as once you ‘feel’ something happening.. well, you can’t always jump up and hit the bathroom running. [In the hospital, I’d had to unplug the machine -had batteries, but, not for the whole infusion] find an unoccupied rest room, get out of the clothes w/o goofing up the catheter and then…] Well, you get the picture.
Whatever, it for me was all well worth it! The headaches are the key issue as they can be the WORST! I take no Tylenol now, just LOTS of Benedryl -enuf to knock out a large animal-one much larger than I am!
Don’t let whoever is doing the infusing switch the brand ordered by the doc…Especially if you have a diabetes background as some IVIG brands are saline diluted and others are sucrose based… substitutions could become a serious issue!
For many it works and you can tell almost right away, for others it takes about 3-4 ’rounds’ or months. During that time you will have lots of blood tests-to check your liver functions [this stuff is stressing in that quarter] and to see if some of your #’s show an increase or decrease in immune aspects. Each of us gets to the IVIG for the CIDP conditions and often other problems as well. We are all different to start with and how we got here is different -each unique.
Please let all of us know how your are doing! Someone here probably has had exactly the same experiences, they’ve just spoken about it in a different way.
Thinking good things for now and the near future.