[Roxie2007]

Well Mike and I went to meet with the Principal this morning about my returning to work part time for a while. It seemed to go well......the Principal wants me back....but said he has to talk to Personnel and see how they can work around the part-time request. He will call me and let me know how things go.
Please keep your fingers crossed for me......I need this job to keep my insurance!
Also we stopped and talked to my dr. office about the IVIG totally knocking me for a loop for 48 hrs after I have them. The nurse told me that's normal and should slowly get better over time....but if it doesn't after a couple more infusions then I should tell the dr. and he will lower the dose. Since I was able to go all day yesterday with out pain I know they are working. So I'm going to go a few more times and hope the side effects get better.
Y'all are the greatest! I've so enjoyed being part of this forum. Hope y'all have a great, pain-free, week.

[MelodyL]

Hi Roxie:

I find it absolutely amazing that your pain level has been affected (in a positive way). When Alan began the IVIG, he was specifically told, "well, it really does not impact your pain, it will help your balance, and well, hopefully, it might help with the pain, but honestly it was not designed for pain, but for autoimmune issues, blah blah blah".

Now Roxie, I know people who are on IVIG and were in wheelchairs and if they weren't on the IVIG, they would still be back in their wheelchairs. It seems to boost the immune system, therby boosting their balance and they can now walk.

So in your case, boy did you get a bonus or what???

Hope all things work out with your principal.

Melody

[rfinney]

Roxie -- I think I said all that I could in my PM's. I am very happy for you . . . at least he was responsive to the situation and your request. All I can add is the old proverb: "Strike while the iron is hot." Just do anything else you can to help him get it done and/or make things easier for him to do what needs to be done.

rafi

[dahlek]

crossed for intermittent periods about all of it all!
I think you did well asking not demanding some accomodations at work and that things can happen for the good of all.
I don't think that there is a person here who doesn't understand the absolute NEED for good insurance and how we could not even at times, HOPE without it!
I do think your doc is taking a good cautious approach to the IVIG. Sometimes it 'kicks in' right away [my case], others it takes a few times [most folks I've met personally who have reactions and are still on it say the s/e's are WORTH IT] to take effect. Maybe getting the infusions scheduled and doses 'adjusted' at the right times [such as getting infusions on late Thursdays or early Fridays and taking Fri off] might do the trick? I do know that my infusion nurse comes early in the mornings [VERY EARLY] and once the Benedryl wears off, I've half a day left to DO things! IF I get anything achy or flu-like, it's a couple of days later and I find keeping a low very low life profile helps keep things from getting worse. Eating light, salads, fruits and soups a couple of days before as well as extra water helps things along. Essentially the tamer the better?
I hope this helps you get thru your next round and then the one after and it all gets easier! Hugs and hope to you! - j

PS I found that any reactions I had were directly related to how FAST the dose was put in...Ask your doc or the nurse next time about when and how the rates are 'upped'! I can go up quickly to my 220 rate, but if they go up slow and do that last at a higher rate - i get some solid headaches! As much as I love my IV nurse and my IVIG...I simply want it DONE as safely and quickly as possible? Safely is more important than quickly...but this is up to each of us and our sensitivities and sensibilities. There is an ART applied here and we all have to learn what works.

[Roxie2007]

HI All!
J, I think my nurse has my IV going in slowly.....it takes 4-4 1/2 hrs for one infusion. I think I get 800cc's......does that sound right? It comes in 4 bottles and she puts those 4 bottles into the IV bag. But I will ask her how slow it is and if it should go in more slowly. It would be worth an extra hr if I didn't have such rotten side effects. My side effects start later in the evening after having the infusion and then last for 2 days after.
Mel, You're right......I did get the bonus with the IVIG with it giving me some time with out pain! I'll put up the side effects for that!
Rafi, Hopefully we'll get good results from my Principal. Mike sent him a great letter this afternoon thanking him for his time and any help he can give us so we have a win/win solution. We SO appreciate all your help!!

[Brian]

Hi Roxie, i just wanted to wish you luck with the employment bit, i hope it all works out well for you and if those side affects are just way to much for you to handle, i would urge you to speak up and let your doctor know exactly how much you suffer after it.
all the best
Brian

[nide44]

Originally Posted by Roxie2007

HI All!
J, I think my nurse has my IV going in slowly.....it takes 4-4 1/2 hrs for one infusion. I think I get 800cc's......does that sound right? It comes in 4 bottles and she puts those 4 bottles into the IV bag. But I will ask her how slow it is and if it should go in more slowly.

Roxie, Melody has had some experience with IV rates being hastened for the schedule of the infusion nurse. See what she has to say about it.

[Roxie2007]

HI! Thanks Bob!

Mel, please tell me about the IV rates. I want to ask my nurse about it tomorrow.....Thanks!!

[MelodyL]

Roxie, when the physician writes the prescription, it's indicated on the bag of Gammaglobulin that is either hanging on the IV pole, or is attached to a pump.

Alan's bag saysd 4 HOURS INFUSION RATE.

That means, when the nurse hooks him up and begins the infusion, it should take 4 hours. NOT 3 HOURS, NOT 3 AND HALF, NOT 3 HOURS AND 45 MINUTES. The slower the infusion, the easier it is on your body.

But, you will sometimes have nurses that have to go to another appointment and that nurse will look at the bag of Gamma and say "oh, 30 grams, we can do a 3 hour infusion, which is 10 grams an hour". I've had 3 nurses tell me that.

I always say "the bag indicates 4 hours, we want 4 hours". Now the last time (when Alan got really sick), one of the visiting nurses did it faster than the 4 hours. Alan felt he was knocked out, got a fever the next day. Well, it wasn't pleasant.

However, when they do the 4 hours, Alan has no problems whatsoever.

So for the past 2 infusions, we have had a lovely nurse, who likes my muffins and we speak french all day long, and Alan is attached to a pump (which she programs, and he gets the 4 hours.

Do NOT LET THEM TELL YOU, oh, you can have a faster rate, it's alright, blah blah blah. You look at what is written on the prescription and you look at what is written on a label on your bag of Gamma (that should be in your refrigerator). You will see it clearly indicates how long the infusion should be.

So if you see that she is rushing the drip, or she says to you "Oh, believe me, you can do this in (lets' say your bag says 4 hours, and she says 'oh you can do this in 3 hours)" don't get intimidated, you say to her very nicely., "the doctor wrote 4 hours, I need 4 hours". And if she does anything different, immediately call up the visiting nurse service (or whoever sent the nurse to you), or you can call up your doctor who wrote the prescription.

You have rights here.

Don't let them bully you.

Be well,

Melody

[Roxie2007]

Thank you for all the info. I'm going to look at my prescription. The nurse has been doing the 4 hrs each time.
We were concerned about the IVIG liquid when we first got it. The infusion center said it doesn't need to be refrigerated as long as it's kept under 75 degrees. We thought that sounded awfully warm so we have been keeping it in a cooler with an ice pack in there.....so it's not frozen just cooled cooler than 75. It's summer in Texas......we're in a heat warning all this week! The temp has been around 100 with an index of 110! Even with the a/c on it's hard to keep the house cool. I guess from now on we'll put it in the fridge when it arrives.
My next IV is tomorrow.......I hope I don't feel dreaful afterwards.
Thanks Mel for all your help!