The Night Before My Infusion

Part of being diagnosed with neuromyelitis optica spectrum disorder (NMOSD), zero-negative, is being limited to what types of treatments there are. I was recommended to go on Rituximab, every six months, until something better would be invented for sero-negative patients like myself. After going through a few infusions, I’ve had enough experience and confidence to share my tips for infusion day.

Night before infusions

The night before infusion I prepare a backpack with the following items:

Wallet

You will need to bring your identification card, insurance card and I recommend cash or some sort of credit/debit card. Checking into the infusions I usually must present my identification card and insurance along with a co-pay. From experience it will be a long day and while some places do offer free lunches, like box sandwiches, chips, a piece of fruit and drink, other places don’t offer anything at all. Depending on how I’m feeling during the infusion process I will either buy snacks from the vending machine or order food to the facility.

Snacks

I’m a medicine taster, anytime I’m receiving medicine through an IV I can usually taste it right away in my mouth and the back of my throat. For example, saline always leaves a weird metallic taste in my mouth. I usually bring salty-sweet candies to help with the taste of medicine like Jolly Ranchers, Sour Patches even Sour Lemon Heads. These intense small little candies help me regulate the taste in my mouth. I also bring a bottled water and juice. I also pack a sandwich in case I get an extra appetite, and bring salty crackers and sweet cookies. This way I have options depending on my taste at that moment.

Electronics and chargers

Make sure to fully charge your electronics the night before. Also remember to. Bring your electronics and its corresponding charger. It is a long day, about 6-8 hours depending on how your body does with the medications. I usually take my phone, ear pods and laptop/tablet. I also have extra 6ft-9ft chargers I bought on Amazon to be able to reach the length from wall to bed/chair comfortably.

Clothing and appearance

My attire for the day of the infusion is usually very chill and comfortable clothing. That for me looks like slip-on sneakers with socks, black loose-fitting leggings, a sleeveless or short sleeve t-shirt for easy IV access, a big over sized thick sweater or hoodie, that can act like blanket. I throw my hair in a messy bun, no makeup and a light spray of perfume on my clothing.

Infusion day

Think of having a "chill" day, but during an infusion. I usually will try to watch a movie on my laptop with my ear pods that way I'm not bothering any of the other patients or nurses with what I'm watching. I also try to get personal things like write down my errands for the upcoming week. Do not take infusion day to make major decisions, as rest and relaxation helps with recuperation from the infusion.

For your safety make sure you have someone drive you home as the medications given can cause extreme drowsiness. from my experience I've received up 75ml of Benadryl in a matter of 3 hours and I'm drowsy for 24 hours. It's extremly important to have someone bring you home at the end of your infusion.