Uneventful is Best: Tales from the Infusion Chair
Last updated: October 2023
If you’ve ever headed out the door and thought to yourself, "I really hope that my one-stick-wonder nurse is on duty today" you might be on your way to the infusion center.
If you’ve packed a snack, book, computer, charging cords, neck pillow, blanket, or best friend, you might be on your way to the infusion center.
If you’ve just seen your neurologist who confirms that you are experiencing a relapse and sends you down the hall to the in-office infusion center, you might be about to receive some powerful intravenous corticosteroids (i.e., infusions). And if you’re lucky, you have a book or fully charged phone with you to serve as entertainment while you sit in the infusion chair and wait for the bag hanging overhead to empty.
I’m trying to think of any persons I know really well who live MS, who haven’t received at least one infusion during their MS tenure. I’m not sure that I can.
Considerations for infusion day
I just completed my 54th infusion of rituximab, and over the years have received at least 30 infusions of steroids to treat MS relapses. That’s a lot of needle sticks, hence my personal hope and silent prayer that it doesn’t take more than 2-3 tries to get an IV started. But first, the nurse will likely take your vital signs and go over any current symptoms or updates to your medical history.
For those persons unfamiliar with how to prepare for infusion day, check out the short list above. Seriously, having things on hand to keep yourself occupied, entertained, comfortable, and/or fed are important no matter if you are sitting in the infusion chair for 2 hours or 6 hours, 1 day at a time or 5 days in a row.
Sometimes the best way to spend the time is to simply slow down your mind, let go, and take a nap or meditate. But know that the infusion nurse may come around every 30 minutes to take your vital signs and ask how you are doing. That can make getting some quality nap time in just a bit more challenging, but not impossible.
Uneventful infusions are usually the best infusions
With so many infusions under my belt, or should I say in my veins, I’ll be honest and note that hardly any two infusion experiences are identical. It is nice, however, when you can get to know and trust the staff so that the time goes quickly and without too much excitement. Meaning, we like "boring" infusions.
Uneventful - that’s a magic word. I always aim to have an uneventful day in the chair.
Recently, however, that was not the case. Due to an insurance change, I had to switch from receiving infusions at the local hospital outpatient infusion center where I’d gone for over 12 years, to my doctor’s office that has a room with three infusion chairs and a single infusion nurse. Note: This was not at my neurologist’s office but my rheumatologist’s office.
I drank lots of water for several days before the infusion. I slept well the night before and I even washed my hair which helped me feel relaxed and comfortable. On our first infusion day, the nurse took three tries to get a vein. “Patients like you keep me humble,” the nurse said. Fortunately a good vein was found. Otherwise the day was uneventful without any infusion reactions and I had my computer on hand to keep me busy.
Don’t hesitate to report events
On our follow-up infusion day two weeks later, a vein was found on the first try. Yay! But then the pre-med IV Benadryl stung more than usual. Ouch. When the bag of rituximab was hung on the pole and headliner of the day was on stage to perform, I was still burning from the Benadryl. I diverted my thoughts to more pleasant things and focused on my computer.
Then I just couldn’t ignore the growing pain in my arm. I looked down and, yikes, my forearm and hand had swollen up and the skin was very taut. I called the nurse over. “I think I’ve got a leak,” I said. Alarmed because the IV pump machine had not sounded the alarm that something was wrong, the nurse took quick action. That vein was blown for the day and the arm was out of commission. I would just have to wait for my body to absorb the medication subcutaneously (under the skin).
I’ll mention that it’s important to report anything that feels off during an infusion. If your tongue starts to swell or your throat feels scratchy, say something. If you start to itch (seriously itch like crazy) or have trouble breathing, definitely speak up! Don’t wait until the nurse comes around to take your vitals.
Fellow patients often share the best information
And for those readers who stumble across this story because they conducted the same search query I did after I got home from my infusion, here’s an answer for you.
Does rituximab sting or hurt if it gets under the skin, the IV infiltrates, or the vein leaks? Yes! It hurts, a lot! Say something — don’t hesitate and don’t try to meditate the pain away.
If you ask ten different people about their infusion experience you may get ten different stories. In my case, you might get nearly 100 different stories. But a few things are typically universal about the experience:
- Your vital signs are checked multiple times throughout the process.
- There will be a cannula inserted into a vein through which the medication is administered. And you may or may not be able to feel the medication enter your vein.
- You are monitored for any symptoms or reactions, but you should still speak up if you notice something odd or uncomfortable.
- The speed of the infusion can be adjusted based on your personal needs.
- If you get bored easily, take something or someone with you to pass the time.
- After the infusion, give yourself time to recuperate, be kind to yourself, eat and drink nutritious foods, and try to sleep well.
Thank you for reading. Please share your own infusion stories. The more we share, the more we help each other on this journey.
Be well, my friends,
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: