Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Having my infusion and I am so angry right now. My nurse is not using and infusion pump so I can not see the rate. She told me she would stay at about 100 for the infusion since I had bad side effects the last two time. She told me she was starting at 30 and would go to 60/90 then 100 and stay there. I started getting a head ache so I took note of the amount of medicine and duration so far and figured that she has been going at least 200 ml/hr for a good portion of time. In 3 hours we have went through 600 ml. She is trying to convince me that we have not gone past 150 ml/hr but the math does not work. She has slowed it down considerably at this point so the last 150 will likely take 2 hours but the damage has been done. I don't have a bad reaction until the next day and I am being set up for a bad few days. The more I type the more furious I am with her. I don't know if she was just going by my current condition even though I informed her I have little reaction during the infusion or if she is just incompetent when manually calculating an infusion rate.
Do your nurses have a pump to use at your house?
Do your nurses have a pump to use at your house?
I've had the same problem with nurses at the infusion center where I used to go. They would crank up the speed while I was asleep. They read the label on the drug and assume that all patients should be able to tolerate the same speed and since they don't have to endure the side effects and misery afterwards, then they just do what they want. It's very frustrating to say the least.
That was one reason I switched to subQ since I can be a little more in control of my infusion each time I do it. Unfortunately, the pump that we use does not have a form of speed control other than the "rate tubing" which is a tube that you can get in different sizes to help control the infusion speed. Once you start w/ a speed on subQ, it maintains that speed for the whole infusion.
Do you have a copy of your physician's orders? It's up to him to SPECIFICALLY prescribe what speeds and everything about your infusion. Did you talk to him about the problem? If your nurse is not following your orders, she is breaking the law. If you were to get sick, she could be held responsible..
The key here is to talk to you physician about it first.
For iv fluid is your daughter getting normal saline or dextrose (I think that is what it is called) or something else? For my doctor ordered a bag of iv normal saline before each ivig but I have read online some brands of ivig are not compatible with saline and dextrose or something has to be used instead.