Finally!!

[chucklebug]

It seems like it's taken forever, but I finally get my first infusion tomorrow. I'll be glad to get started!

Any tips for my first infusion you may be willing to share?

Thanks!

[lindaincolorado]

Hi chucklebug, I would be hydrated, either eat before or bring something with you (you will be there at least 2 hours) and bring something to keep you from being bored I read-many places have personal TVs ...
Good luck and hope this will be a GREAT med for you!! I will get #64 Fri-it has been a great med for me

[chucklebug]

Thanks, Linda! I want to be hydrated, but not too well, since one of my sx is bladder-related, IYKWIM. I'd rather not have to pee during the infusion.

I just remembered I got that nifty red blanket for Biogen Idec, too.

I have a singing rehearsal a couple hours after my infusion. Anybody see any problem with that, potentially? I worry there might be some side effects.

Thanks again.

[0485c10]

Being well fluidized does not mean you have to drink a lot the morning of or a few hours before... just drink more than you normally do a few days before and the night before then stop drinking a few hours before the infusion....but don't be concerned that you won't be able to go to the bathroom during the infusion. the iv plugs into an electrical outlet, to control the rate of the drip. it's pretty easy to put the drip on pause, unplug it from the wall socket, then the iv pole is on wheels, walk to the nearest bathroom empty your bladder, go back to the iv room, plug the iv back into the electrical outlet, press resume and away you go....

ask the nurse how to pause it, where to unplug it & where the nearest bathroom is in case you have to go.

for the first few years the nurse told me to let her know when i needed to go to the bathroom and press a button on the call light and she would be right over to get me disconnected....

but then one day after xmas when i was wearing a new pair of jeans, i demanded that she tell me what button to press to pause the iv so i could go to the br on my own, i said my jeans were too new for me to wait for her to get there to disconnect me. she laughed and showed me what button it was.

the only thing if you don't press pause before unplugging it, it will start beeping loudly while you are urinating. the(hospitals) are used to the beeping, so it doesn't bother them if you wait and fully empty your bladder while its beeping, but if you can avoided it by pressing pause why not?

there are multiple buttons on the IV...one button pauses and then you can easily resume, but one button resets so the flowrate has to be re enterd to resume. so ask the nurse what button it is in case you do need to go to the BR.

PS..I ask what my BP reading is each time..i know when my BP is normal i'm fluidized enough but when my BP is low i know that before the next infusion i will have to concentrate on drinking more during the whole month.

[0485c10]

And avoid things that dehydrate, like caffeinated coffee.

[chucklebug]

Thanks for the great advice. I'm so happy just to get this show on the road.

[LL60]

I just unplug my iv unit, it then goes to battery and is fine until I plug it back in. Never realized how cool that was until you said something that not all are like that.

chucklebug - how did it go today? Did you go on and sing? Hope this begins a good treatment for you.

[chucklebug]

I don't get the infusion until 3:00 Pacific. My quartet has a big gig Saturday night, but I don't know - my sx have been bad lately, and I don't think I can stand long on stage the way my feet hurt. I've been sitting during practices recently. But I don't want to sit on a chair onstage. So they found another baritone as a backup just in case.

I'll let you know how it goes!

[chucklebug]

Well, the infusion went without a hitch! No signs of allergic reactions, just a very minor headache that ibuprofen took care of The people at the infusion center were awesome.

Unfortunately, I didn't get to sing, not because of how I felt, but because I couldn't get transportation.

My sx are still bedeviling me. I don't think I can manage to stand on stage for any time now, so I'll not be with the quartet tomorrow night. I hope I get some relief eventually so I can get back to performing.

[LL60]

chucklebug,
Glad it went well. I use to get headaches too; not anymore.
Hope you are back to being able to stand on stage and sing your heart out before long. I noticed some improvement by 3 months and great improvement by 6 months.

[Michalk]

I joined you!! I did my first one today - I feel exactly the same - no better, no worse