Infusion Day Tips
Infusion day is one I get excited for (usually). That’s because I normally am feeling like a human dipped in concrete with a brain the size of a fly and am in need of my re-up of Ocrevus.
In the case of receiving steroids infusions, I am more apprehensive because of the side effects. Overall though, I look forward to it because it makes me feel like I am doing something, like, you know, telling MS to go fuck off. :)
Anyway with time and experience comes knowledge. And, damn, I have it.
Here are my top tips so you can get in and get out as smoothly as possible on your next infusion day.
Get Informed
Learn about the medicine you will be receiving - side effects, dosing, how you may feel, etc. You can ask your doctor these questions or ask other people who have taken the same medicine about their experience. Remember to take the former with a grain of salt, just because they had something happen (good or not so good) doesn’t mean you will.
Most drug manufacturers have patient navigators, nurses and/or pharmacists to help answer your questions too! Ocrevus has a program called Ocrevus Connects to answer your questions - all you need to do is call 1-844-ocrevus (627-3887).
Strategically Prep
That means plan and prepare meals or snacks for the days around your infusion ahead of time so you don’t need to worry about cooking.
Do your errands in advance so you can relax.
Plan the days leading up to your infusion strategically - now is the time to finish those few things so you can rest, rest, rest after your infusion. Reserve a few days after treatment to be home and chill. Some people will schedule their infusion on Friday so they have the weekend to take it easy before returning to work.
If you need a ride to and from your infusion, get it arranged ahead of time.
Lastly, don’t skip on sleep or water leading up to treatment day. Clock the necessary hours of zzz’s and hydrate so your body is in tip top shape!
Gather Intel on the Infusion Suite
If it helps you, call the infusion suite and get the 411. You can ask questions like…
Can you bring food and drinks?
Is it one big room or are there individual rooms?
Are people allowed to talk on their phones in the suite? Believe me this has the power to make or break an experience, especially if the person feels the need to yell when talking on the phone. :)
Can you bring a guest? If so, can they come back and sit with you or do they have to wait in the lobby?
What is their late arrival policy (more on that below)?
Pack Up
Alright the day is here. Make sure to pack the following…
Water (you can bring a drink that’s not water too, but definitely bring water) - If you are dehydrated it’s harder to access a vein. Plus, with Ocrevus or steroid infusions you will not feel that great if you aren’t hydrated.
Snacks - Bring a variety of goodies. Few pointers - the steroids may give you a metallic taste in your mouth. Citrus candy (like Lemon Drops) or mints/gum can cut that taste and a must. You may want to limit salt intake, high fat and processed foods. Like, it’s maybe not the best day for a big ass meal from McDonalds. If you are in a suite that is one large room don’t bring anything with strong smells. It’s not the day for seafood, hardboiled eggs, or anything else that will stink up a room.
Laptop, Tablet, Phone or other entertainment (like books or games) - Some suites have individual rooms with TVs, some don’t so bring things to keep you occupied in case sleeping isn’t happening. Pro tip: don’t forget their respective chargers!
Headphones - Remember how I said people like to yell on their phones? Bring something to cancel that sound out. It also works great if you aren’t in the mood to chat while getting your treatment. Can you tell I am an introvert when it’s treatment time? ;)
Sleep Mask, Pillow and/or Blankets - If you want to sleep in darkness, bring something to cover your eyes, like a sleeping mask. Most of the time infusion centers have blankets and pillows, but if not, bring your own (ensure it’s clean aka no pet hair, no strong scents, etc). You may get hot then cold then hot again. It’s no fun to be stuck in treatment while sweating or shivering.
ID, Insurance, Co-Pay Assistance Cards, and Payment- Not much to say on this one, don’t forget these! Even if the office has everything on file - better safe than sorry. If you want more information about the cost of treatment prior to receiving, call your insurance company and/or the co-pay assistance program for insight.
Hand Sanitizer + Face Mask - This should be obvious and self explanatory but in the honor of completeness, I wanted to include it!
Pick a Fit
Pick out an outfit with easy arm access and keep in mind your one arm will have an IV hooked to it so you can’t put a top on or take it off if you get hot or cold. And, rompers are super fucking cute, but unfortunately not infusion day attire, unless if you want to really boggle your mind when you go to the bathroom.
Comfy, loose clothing and dressing in layers are your bffs for infusion days.
Don’t be Late
Look, shit happens, we get it. Traffic may be a bitch or your cat may have decided to throw up their entire breakfast in 4 different spots. If this happens and you’re running late, let the infusion suite know immediately.
Because of the duration of infusions, the amount of patients scheduled, and the amount of staff working, the suite is running a tight ship. It’s critical to let them know ASAP. Sometimes it’s not a big deal, sometimes they may need to reschedule. At the suite I was at today, there is a 20 minute late policy, if you are more than 20 minutes late they may need to reschedule your treatment.
This should go without saying, but don’t be a dick about having to reschedule either. They truly can only accommodate so many patients per day and often are over scheduled already. Plus, being mean is not gonna fix it and is more stress for you and them. It’s a lose - lose - lose.
Just Book it
Book your next infusion treatment (if needed) while you are there. It’s way easier to do in person then deal with a phone menu and talking to a robot until you make it to a scheduler. And, like I mentioned earlier, these places are often booked well in advance. Therefore, scheduling while on site is the best way to secure the day/time you want for your next infusion.
Alright, those are my hacks for making infusion day as painless as possible. I hope they help! :)
