Preparing For & Attending An Infusion Appointment
As an autoimmune disease patient living with Crohn's disease and rheumatoid arthritis, I have a long standing relationship with infusions.
From inpatient hospitalizations to doctors' offices, infusion centers to home health care, I’ve received several different medications administered via IV infusion over the last many years.
A guide for RA infusions
In the beginning, I remember scouring the internet for recommendations and stories from other patients - I wanted to know what to expect, how to prepare, what to do during my actual infusion appointment, and how to take care of myself afterward. I found bits and pieces of information in several different places, but a lot of it I had to figure out on my own.
Today, I’m compiling all of the information I’ve learned in order to give you the guide I wish I had!
In the days leading up to your infusion
No matter what medication you are prescribed to receive via infusion or how often you will get infusions, you’re going to want to spend the days prior focusing on hydration. With good hydration comes more visible veins, making the IV access attempt much easier, faster, and less painful for you.
In addition, being well hydrated going into your infusion may also help you recover in the following days. I’ve noticed I’m less likely to get headaches, extreme fatigue or muscle cramps, also known as an “infusion hangover” when I pound water and oral rehydration solutions (like Drip Drop or Liquid IV) in the 24-48 hours before my appointment.
I have also found that for me, personally, eating more protein in the day or two before (and the day of/after) my infusion helps me experience less fatigue and boosts my energy a little.
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My infusion essentials
Most biologic infusions for rheumatoid arthritis take somewhere from 1-4 hours for the administration of the medication. Once you count checking in for your appointment, getting an IV in, any pre-medications you need to take, etc., the entire appointment can be half a day or longer. These days, with COVID-19 still rampant, you may not be able to have a support person join you for your infusion.
I know this might seem really overwhelming, kind of scary, and definitely lonely. This is why I recommend packing a bag with some important items before heading out the door.
- A water bottle
- Snacks! Seriously, friends - snacks go a long way.
- Entertainment - Generally, I recommend having your phone, tablet, or laptop with you. Just don’t forget a charger/portable battery and headphones! Some other recommendations include a book to read (electronic or physical), a small craft to do, or an electronic game to play.
- If space allows, a small blanket - Some hospitals and infusion centers offer these, but I always felt more relaxed and comfortable with my own.
Tips for passing the time
In order to rest, or keep my mind busy (anything to distract myself), I’ve built a list of things I do during my actual infusion time.
As mentioned above, I bring a tablet or laptop so I have something to watch and/or listen to. Focusing on a TV show or movie helps me stay calm, stop staring at the clock, and forget that I’m spending the day alone managing my rheumatoid arthritis.
Activities
I’ve also found it helpful to have “activities” to do. E-books tend to be my favorite, but I’m also really into doing Sudoku on my phone or tablet. Sometimes, if I’m not too sleepy, I’ll respond to emails, get some work done, or catch up with friends via text.
I’ve sat across and down the aisle from patients who enjoy doing something more active with their hands - things like coloring, knitting, crocheting, playing with Rubix cubes, etc. Anything that you can toss in a tote bag and doesn’t require much setup or cleanup would work here.
Taking time to nap
And finally - I often use my infusion time for a nap! My premedications include Tylenol and Benadryl, and occasionally it’s just a matter of time before I find myself dozing off. As long as the nurses can access my IV, they’ve never woken me up before the end of my infusion (and to be honest, my bladder usually wakes me before then).
One last tip - definitely wear something comfortable to your infusion. You’ll be sitting/reclining/laying for a while and there’s nothing worse than hard pants or itchy sweaters when you’re trying to relax and stay comfortable.
I hope you find some of the above tips helpful! Is there anything you’d add to my lists? I’d love to hear about it below!
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