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.
Had my second attempt at IVIG yesterday. The first round of it put me in the hospital last month! I had a nurse this time that I was not familiar with because they had to make some scheduling changes at the center. I was SO frustrated with him, which was upsetting because I have absolutely loved my center and how amazing they have been with my infusions. I was sick before my infusion which I know makes me react badly, and I was not tolerating my max rate. I was doing perfectly fine on lower rates and probably would have had a successful infusion if we kept them down but this guy was tough to communicate with. I had to page him if I needed something, where I am not used to being left alone. I had to request every rate change, and he was trying to put limits on the time we would keep the rate lower before we went back up which was not ok. I started reacting badly, and he didn't address it for a good 4 hours at which point the symptoms were uncontrolled. So I told him to stop my infusion completely and get in touch with my doctor because I knew I would not tolerate the rest of the infusion. My body was done and it was unsafe to keep going. So I was sent home on an IV and will do another round of treatment tomorrow with my normal nurse. I got home with a really high fever, awful headaches, pain, and weakness. I have things better controlled this morning, but it really angered me that this could have been a good infusion if it had been done safely, my rates were lower, and my symptoms were addressed. Hopefully I recover quickly and the infusion will kick this infection. I feel like I just needed to vent, so I'm sorry if there wasn't a great purpose for this post!! Hope you're all having a happy weekend:)
I'm sorry you had a jerk for a nurse, especially when you are doing the best you can to get your new treatment plan started, and your Immune System boosted up.
There's always a bad apple somewhere.
This month my Rheumy, who Is great, and is also a Fellow, has a lousy attending...all her other Attending's have been great, but this guy was a jerk, so now until this Attending moves on she is stuck treating me according to his instructions, and I am stuck getting sub standard care, b/c my Rheumy is 10x better than
Dr Jerk Attending.
Maybe you can talk to your main MD and request to not have that nurse again? Your care is at a critical stage, so his actions were inexcusable.
Best, LuLu
I'm glad you have a place to talk it out. I'm super happy you are back with your usual nurse ho understands ands responds to your needs.
I can understand if you want to vent ant then let it go. But, perhaps, since you have a good professional relationship with the nurse you are seeing tomorrow maybe you could ask her to advocate for you.
You could start by explaining the terrible interaction today, your great professional relationship with the second nurse, and maybe this nurse would be kind enough to present the problem to the Infusion Manager who might offer you some acceptable remedies.
Either way, I sure hope you feel better quickly!
TheWino