HI Mel and Alan,
I talked to the Infusion center this morning. They said my dr. has already ordered the Benedryl to be administered thru the IV prior to the infusion and they can give me Tylenol that way if I get the headache from the infusion.
I called my insurance co. and they are paying for the entire cost of the infusion since I've met all my deductibles! YEAH!!!!!
So I guess I'm all set for Thurs! I'm keeping my fingers crossed that all goes well! Roxie

Good luck and keep us updated. You will be in my thoughts on Thursday. Take care of yourself.

Yeah, here's a hug from me too
Can't wait till you update us.

Mel

Hope all goes well!!!

You are set to GO! Since this isn't something you are or 99% of the folks in the world familiar with, just be sure to ask questions about what all they do, are doing, and should anything....ANYTHING at all not feel right SPEAK UP! Most of the time ....that 99% all goes without event at all...But that teeny 1% can be a frightener...so bone up on what all should be done, if it doesn't seem right...ASK and ask loudly...Once the line is in, be prepared to do some serious dozing...the pre-meds do that to you. Most infusion centers clinics are set up with a TV or Muzak, magazines but best to bring something not too exciting to read...just amuzing and go for the duration. The hospital I had infusions at a clinic in would either provide breakfast or lunch..was nice at first as I didn't have to 'fix anything', but that menu never, ever varied. It was as totallly BLAND as any sort of food could be! So, I would go early, bring my own pre-made Mug, and snack to nosh when the line was in and actually going. Then sleep. Only real issue can be if there's a TV someone will always want to watch a show you HATE...
So, ask questions, be prepared for other folks [some who feel they are or really are more important or deserving than you] to interfere, and maybe, you will find other nice folks dealing with all this scainess of being 'infused' and you can find real people to talk to! IN the meantime, just HYDRATE [drink water] in preparation - and, I've found eating somewhat litely the day before infusions helps some...after that first dose tho...I get one truly BIG appetite...that may just be me tho, or that I'm feeling better?
What time are you going? I will be sure to send good thoughts for that duration! - j

Hi All!
Thank you for all the good wishes! I have to be at the center at 10 and it's suppose to be a 4 hr infusion. I received paperwork from my insurance co. today and can't really make heads or tails out of it. The first set of papers (I received 2 separate letters from them today) I think my dr. has set me up for 12 weeks of infusions (some as home infusions) but the insurance has actually approved me for a whole year of infusions! That's scary!
Do you know anyone who's continued working while getting these infusions or are most people who's getting infusions on SSD? I'm worried I won't be able to return to work the middle of Aug. when school starts again. Right now my pain is getting worse.

Dahlek:
Thank you for all the great advice. I hadn't thought about the Benedryl making me so tired during the infusion. I will definently speak up if anything looks amiss on Thurs. I just hope everything goes well! My husband's going to be there with me the first 2 hrs and then my friend is coming to sit with me the 2nd hrs and to drive me home. I'll sure be glad when this first session is over with! Roxie

Ok I have no idea about the infusion and work but I will say your health is number 1. I have had to take off school and work in the past for my recovery. It was hard but I had to remind myself and now you that you have to look long term. Its better to take a little time off now but in the long run have a healthy and more fufilled life.Sometimes rushing back is not good for the health mentally or physically too. If your able that is great but the most important job you have is to take care of you now. I'm sorry the pain is getting worse but good luck on Thurs.

about the doctor orders and the insurance: You qualify for a long-term series of infusions by the insurance company due to your diagnoses. No problem there!
Doctors are usually very cautious about starting and then maintaining infusion orders...first off to see how it affects you positively and negatively [usually either you will feel a bit or a lot better-or not] and then see what your blood work looks like, as infusions can put a strain on your liver functions. If all works out it could be continued indefinitely.

One other issue that probably no one has told you about is Blood Work.
You will probably have blood drawn immediately before your infusion [easy thing to do in a hospital], but you will probably have orders for more blood work again some time after your infusions. Should your blood be taken by the home nurse at a later date, be sure to get copies of those tests! If anything required on the tests says "* could not do, sample hemolyzed", talk to your doctor about getting separate blood work orders and get the blood tests at an area laboratory [Usually Quest Diagnostics or Labcorp] That way the blood doesn't deteriorate and gets tested completely right away. I always arrange for blood work orders to be done on the day before I get my infusions and before my next [various] doctor visits. This way the docs get up-to-date reports on my overall status. It's hard to get all of my docs to cooperate at the same time, but in the end they are happy to get complete reports. Saves time and hassle in the long term.

Many folks who receive infusions are able to continue working, tho maybe on a modified schedule. You have to work infusions into either an infusion clinic schedule or home nurse's schedule. Those schedules may entail adjusting your work hours to work the infusions in.. For me, the infusion schedule is my FIRST priority, because it works for me and when I'm even a day late I hurt more!

Take it as it comes, it's going to work or not. I believe that it WILL WORK! - j

Dahlek, Thanks for that blood work info! What does "could not do, sample hemolyzed" mean? I will definently watch for that on my next blood work. So you always get blood work before the Infusion or just once in a while? I'm not looking forward to all the 'sticks' because I hate needles! (the fear comes from my childhood. I was sick ALL the time and had to have LOTS of Penicillian shots and I hated them!)
I'm thinking I may have to change jobs at my school to something less demanding.....not sure what that would be just yet. Life sure is full of changes! Thanks again! Roxie

hemolyzed means it was too old [hours/minutes...who wants to know the details?] Just means that it didn't get testing w/in the window of testing for that particular test...
As for the 'needle aspect'...Wow, I have to tell you that from a kid, IF ever I got a shot or blood drawn, I would be fine for about 27 minutes, then pass out cold! Usually hitting my head on the floor as I 'landed'. One knocked out cold fish! I have gotten better since then. Had to! No choice?
It helps just to: a] get really well-hydrated; b]don't hold your breath while the whole 'thing' is being done...and c] mentally put yourself in the absolute BEST place you have ever been! Just do not focus on that needle! Anywhere but that! Closing your eyes, sighing and breathing a nursery rhyme helps me a lot...Sounds silly, yes, but it works! Don't questions what works!
So asking questions about what they are doing to YOU, why it's being done That particular way and HOW should it feel...get their input...make them [the nurses] tell you what to know if something is wrong...they get 'rusty' otherwise. Be curious, interested, keep notes, and they will know you are: what one nurse has called me ' a LIVE one'...meaning shortcuts are going to be noted and asked about..

OK about the 'blood work'...the thing is, the best time to check after you get on 'maintenance' -what I'm on now, monthly infusions...is that that is going to be your lowest IVIG effect day...the day of or the day before your prior infusion. Soo, any new, exciting issues or rampant infections [ usually not] are going to show up then, and, should the infusions test your liver functions too much and not have any 'recovery' it will be then as well.

Please keep in mind, for the future...NO MORE FLU SHOTS! You cannot have one and shouldn't need one as long as you are on IVIG. You should NOT have one for at least 6+ months after you stop completely should you stop...

Just take it as one new adventure for starters, be cool, watch things, meet people, and then go from there. I am truly glad you are getting family and friends to and fro.. the first times are really the most scary...tho they end up not being so.. but w/benedryl etc in you...best not to try doing it on your own until you know what IF ANY reactions you may get..You will, I hope feel TOTALLY GREAT after it all. That is how I felt! - BTW I will let you know how I'm doing if you promise to tell me how you are doing! - j