From The Infusion Chair
I'm writing this post from the infusion chair, hooked to an IV, as a biologic medication drips slowly into my veins. I'm not sure when or exactly how it happened, but this scenario, which would likely seem foreign or even scary to most people, feels quite ordinary to me now.
It didn't always feel ordinary. I still remember how I felt when I got my very first infusion. At the time I was 25 years old, and a very busy dual degree student working on a law degree and a masters in environmental policy. I was a member of the law journal, worked as a newsletter editor and events planner for an environmental research center on campus, and I was the only graduate student on the University's club water polo team.
Diagnosed with RA in grad school
Then it happened. It started with some pain in my toes, which I chose to ignore after the podiatrist's suggestions didn't help. Then I started experiencing pain and swelling in my fingers and wrists, but it was exam period and I brushed it off as too much time spent in front of my computer. After the semester ended I expected to feel better with rest, but somehow my fatigue only got worse and my pain increased. Everyday tasks - standing, walking, eating, brushing my hair - became excruciating. Finally, when my knees swelled up to the size of grapefruits, the doctors gave me my diagnosis: rheumatoid arthritis.
My rheumatologist worked on my treatment plan
Anxious to feel better before the new semester started, my rheumatologist and I decided to treat aggressively. We started with a disease-modifying antirheumatic drug (DMARD), pills that I took orally once a week. But after a few months of this treatment brought no improvement, my rheumatologist suggested we try a biologic medication.
The biologic medication sounded promising
He explained that biologic medications are made up of genetically engineered proteins, which are derived from human genes. These medications are designed to inhibit specific components of the immune system that play pivotal roles in inflammation. It sounded very promising, but there was a catch - you could only get biologics via injection or infusion. (That was true at the time, though today there is actually a biologic medication that can be taken orally.)
Starting my first infusion with RA
My doctor recommended a particular biologic and I scheduled my first infusion. I was so nervous about starting the treatment that my mom flew in from out of state to go to my appointment with me. My blood pressure was high from nerves, and only increased as I looked around the infusion room and saw multiple people hooked to IVs, all of whom I thought looked quite sick. Did I look so sick? Was this now my life? It didn't help my nerves when the nurse somehow splattered my blood all over the floor while trying to place the IV.
Everything went smoothly as the IV dripped
But, after a bit of a rough start, nothing really happened. My mom and I sat there for several hours, flipping through magazines and talking as the IV dripped. I did feel kind of embarrassed when I had to roll the IV down the hall with me to go to the restroom, but it did help to have my mom there for moral support. And then it was over.
Adjusting to my regular infusions
Four biologics and almost eight years later, my new infusion nurse is wonderful. She asks about my kids, places my IV with no issues, and pops in to check on me often. As I sit here, it's still strange to look up at the big clear bag holding my medication. It looks almost identical to the bag of saline next to it, but I know it holds $10,000 of medicine.
I have more confidence with infusions these days
To get to the restroom I still have to drag my IV down the hall – and now I have to go through the dermatologist's office next door – but these days I have a lot more confidence. Sometimes I even enjoy the funny look I get from patients in that waiting room! And, other than being stuck in a windowless room for half the day, infusion day is honestly no big deal. In fact, as a mother of two small boys, getting to sit alone in a chair for a few hours almost feels like a vacation! And I'm very grateful to have access to a medication that helps.
Does your RA impact you financially?