Hey! Hope you saw my post back to you waaaaaay down the board. I go for mine on Feb. 6-8...back up to UVA. Dr. wants to continue doing them there for now.

My question: after having them done so often, can you give me any sort of advice about how to handle them better? Last time I got so horribly ill and had the worst headache I have ever experienced. Is there anything you can do to lessen the side effects and do they happen every time? Ugh! I can't imagine that!

And I am SO terribly nervous about something BAD happening during them, like some terrible adverse reaction. Is the chances of that greatly reduced since I have already had them once?

Hope you can help!!!

By Luvn29 on Saturday, January 31, 2004 - 05:52 pm:

Bump for Marsha...

By Marsha on Tuesday, February 3, 2004 - 07:46 am:

I am so sorry, I didnt see this post for a few days.....

I always premedicate before my treatments with Tylenol and Benadryl and then when I am being infused, I always have them run the rate very slow. If they go too fast, I get the headaches worse than ever. Sometimes, I have to have Phenagran in my IV line and that helps both the headache and the nausea.
They usually increment my drip rate about 40 ml every 45 minutes and we never go any higher than 220.....last time I was inpatient and had the nurse bump it up to over 300 for the last hour and I paid the price.....

I never worry about bad things happening, altho I do realize that they could during the infusion, I usually just sleep and let my mind be at peace knowing that I am in capable hands, either way it goes.....

If I was having my infusions at UVA, I would even be more at ease....
Just try to rest and take it easy the few days afterwards......

I call my monthly infusion, MY LIQUID GOLD.....
I can not get over how expensixe those bags of immunoglobin are...I try to save my strength and space it out for all 4 weeks before the next one and I do pretty good.

Good luck and hope all goes well.....

Marsha

By Marsha on Tuesday, February 3, 2004 - 06:38 pm:

bump

By Luvn29 on Tuesday, February 3, 2004 - 08:03 pm:

Thank you so much for all the information and little tidbits!

However, I do have some bad news...for now...

My insurance is balking at paying for these again because I don't have a specific diagnosis. I told them that I and the drs. are doing everything we can to get a firm diagnosis, but for some reason, my body doesn't want to cooperate and give us one. They say that since I don't have a specific one, that the treatments are kind of experimental. Like, huh, maybe this will work. I told her it isn't experimental anymore because it worked so well when we did it.

I am just devastated because like you said...it is liquid gold. And I cannot afford to pay for the costs myself. No way! I am already swallowed up by co-payments and such.

She said that if my dr. can approve and get someone in this area to do it outpatient, that I MAY be able to get approved, but they aren't sure about that either. I am at a complete loss here. I just don't know what to do because I finally find something that works, and they want to jerk it away from me. I have had several severe reactions to meds and such since becoming ill and that is why the dr. wants me to be inpatient when I have this done. This is only my second one...

My dr. has sent in information and they still denied it today, and he told me he is calling to speak with the medical director at the insurance company (was supposed to do that this afternoon) and that he will call me tomorrow at the latest to let me know what we are going to do.

I just broke down when I got off the phone with the insurance company. Was so upset I had to wake my husband up balling my eyes out (he works third shift, so was still sleeping). I feel like there are constant obstacles being thrown in my path constantly.

Thanks for helping out so much, and I will let you know what the dr. decides and what is going on. I'm so glad that I have someone who understands how important these treatments are and why I am so devastated about them cancelling this one. I really need it done...yesterday, if you know what I mean...

By Luvn29 on Tuesday, February 3, 2004 - 08:08 pm:

Ooops...*balling* should be *bawling*... blonde moment! hehe!