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.
I am scheduled to have my first infusion in a week. I am having it at the cancer where I work. I know lots of people say hydrate-and I already drink tons during the day. What else can I expect or do I need to do to prepare? Also...my insurance didn't require a pre-auth for treatment. Is that common? Thanks for all your input.
You got it, hydrate well, ask if they will be pre-medicating you (some do not as they believe why medicate if you don't need it), ASK what the rate will be. THE most common problem people experience is usually from the nurses slamming the infusion in way too fast. Then you end up suffering for days. I would discuss this with your doctor perhaps and have him write it for super slow. It will take all day (unless they go max speed). Take a blanket, snacks, movies or books, warm socks. Prepare to be down that day and the next (possibly). Have tylenol and Gatorade on hand JUST in case and benadryl. Were here if you need us!! You will do great :)
they have a community room and private rooms i am usually in a private but i dont mind when i am in the community room...
my hemo/onolcolgist does igg and chemo and iron infusions and a few others that i am not sure what it is....so there is always a variety of people....(i see an immune doc, but i infuse at my hemo's office they have room for recliners for around 10 people 6 in the community room the rest are private rooms if you are infusing in a doc's office they probably have something similar...if it is an infusion center i have no idea what to expect i have only infused at my doc's office i also do orenica infusions once a mth and i do it in my rheumo's office they are set up for 3 people to infuse at one time in a community room....
thats my experience in 2 different offices not sure how yours is set up...hope that helps???? i do premed with zophran for nausea and if my asthma is acting up i premed with a steroid iv and i take tylenol throughout the day every 4 hrs
go SLOW!!! i have 60 g privigen 10% thats 6 bottles and i dont go over 100/hr thats about a bottle an hr if i try to go any faster i start getting feverish, chills, achy....ask what your dose and brand is...i was clueless the first few mths (when i frist started i could run it fast as my dose has increased i have had to slow down the rate...now i spend the day there!).....and ask them to go slow ....knowing your dose and how long it takes will give you an idea about how fast they infused you..... also notice the solution most i think are 10% or 5% it matters in that the rate is calulated differently .....the rate at which i infuse and hydration are the key for me to not feel like crap.....in ig living a few mths back there was an artcile that talked all about it i think kelli posted it on here....
good luck and let us know how it goes!
You probabbly know what to expect a lot more than I did as you work in a centre but I must say the advice I received here made my second infusion a completely different experience.
I drank Powerade as if it were going out of fashion during the infusion and hydrated well the day before as well(albeit not with Powerade). I took my own OTC premeds and the one thing I felt helped me a lot was music. I know you have your mum going with you so that's great. I'm on my own and the first time I was at the day hospital for 9 hours, the second time 6 hours :-) . I couldn't concentrate on reading and felt much more relaxed and able to disconnect listening to audio books and music.
Good luck and I hope all goes as smoothly as possible for you. Let us know :-)