Wow this doesn't sound right...have you tried calling your infusion company and explain you are not happy with your nurse and see if you can get another one? I would want to see for my own eyes what the infusion rate is PERIOD.

If you're to mix the Gammagard S/D yourself, you need to know how much of the water to add to the powder. I mix it myself and it takes 2 hours for the solution to mix because you can't shake it.

I agree with Kelli though, contact your specialty pharmacy and request a different nurse. Your current nurse seems to seriously be lacking in communication skills!

I'm curious about the home infusion thing too. I was contacted today about a new in-home infusion company here in my town. I'm skeptical as all get out ....

I'm doing ok with the SubQ for now, but as far as IVIG goes, I would seriously consider going back to it with my nurse I have now...she's wonderful! She doesn't rush patients and goes above and beyond to be helpful (See my journal).

It sounds like it's really dependent on who you get though. My nurse happens to be a cancer survivor, so I think that has a lot to do with her level of compassion.

I use a home nurse and he does all the mixing. I agree with Kelli and Mel; it sounds just plain wrong that you were asked to do the mixing. I recommend you call your insurance company's specialty nurse supervisor and let her/him know about this. Also, you may want to request a different nurse or home care company. You should also be receiving a call from the insurance company sometime after the IVIG checking up on how things went as well as the home care nurse's performance; mine called the following week.

As to lunch, my nurse actually made me lunch though, I'm sure this is not normal. I was sent a digital pump with the meds and other supplies which the nurse sets the drip rate with. A case came with the pump that I just slip over my shoulder and I can basically do whatever I want or can.

I receive my meds and supplies 2-3 days prior to infusion. As to suggestions about home IVIG everyone is different or, so I hear. One thing my specialty care nurse recommended during the insurance company's follow-up call was to have an Epipen available in case of a severe allergic reaction. The home care nurse may have them available but, the insurance company shipped me two to have on hand free of charge.

My nurse warned me that the IVIG would
dehydrate me so I drank plenty of water during and after but no more than my usual amount which is way high. One thing which you may or may not experience is major exhaustion the next day. I didn't feeling ill or anything just plain exhausted. I stayed in bed till 6PM the next day and only got up to make sure I ate and drank lots of water.

My best advice is to try to relax before and during the IVIG.

I called Accredo and talked to the nurse manager. She will be sending an infusion pump to my house with the next infusion. She did say that it is fine for me to mix the medicine since it takes so long to dissolve, however, I should NOT do it myself this time. I need to wait until the nurse arrives and she should supervise me at least once to make sure I am doing it correctly before I do it on my own. She will talk to the nurse about that.

This nurse is the first one that was able to get the IV in on the first try and she did it on the back of my left hand. The last two put it in right at the elbow . She does get a bonus for that.

Since I will now have a pump that I can monitor I think I will be much more comfortable.

I was also unaware that hydration is so important for up to 48 hours after the infusion. I thought it was just before and during it was so important.

I will give this nurse one more try, if for no other reason than with the pump I can monitor my rate and with a little training I can do the mixture but I need a nurse who is good with a needle to get my IV started. That I can do nothing about.

I also scheduled my next dr. appointment for the Monday after my next Friday infusion. I think it will help with having my questions fresh on my mind.


Thanks for the feedback.