Good morning and HAPPY Friday to you!
Yesterday marked one year of Remicade infusions for me, so I wanted to share what a typical day is like when I get an infusion at the hospital. I also wanted to share some advice and tips for one’s first appointment since Remicade/infusions/hospitals can be kind of scary.
Ok, so my day started out like most days: Oatmeal, iced coffee, and cuddling with Quinn on the couch. Then, I get him ready for daycare, drop him off, and drive home to take a shower. I get dressed, do a little bit of work, and then head into Boston for my Remicade appointment.
Tip #1: Give yourself plenty of time to get to your appointment. You definitely don’t want to be rushed/stressed out. Plus, infusion centers are typically pretty packed (at least the ones at MGH), so the nurses want to get you started ASAP, so other patients can get their treatments too.
I drive to a nearby T station, park my car, and then take the subway into Boston. I play on Instagram and sip water on the ride.
Tip #2: Make sure you’re good and hydrated for your appointment. It helps the nurses find your veins for the infusion and they’ll love you for it. Usually, the IV will go into your hand, but sometimes it’s done in your inner elbow. (I personally think the hand is more comfortable.)
I arrive at Charles/MGH with about 40 minutes to spare before my appointment, so I run some quick errands in the area. I cash some checks at the ATM, print some photos at CVS, and then pop into my favorite Whole Foods to grab lunch and iced coffee.
Tip #3: Bring whatever you need to make yourself comfortable. Most infusions last 2-3 hours, so I often bring food and my laptop. I usually work during my infusions, but you can also watch TV/movies (on your laptop/iPad), read books, and sleep.
At Whole Foods, I order a pumpkin cold brew coffee. Thankfully, it wasn’t insanely sweet, so I really liked it.
I also load up on goodies from all of the different salad and hot bars.
I arrive at my appointment about 5 minutes early, check in, sign my life away (kidding – but I do have to sign something that bills my health insurance because Remicade is wicked expensive), and then I quickly use the bathroom before heading into the “infusion suite.” (The infusion suite is just a nice name for the room where the infusions are done. Some are big and open with individual chairs for patients; others are a little more private with curtains/dividers between patients. I was actually in my own private room yesterday because the infusion suite was so busy.)
Tip #4: Use the bathroom/do whatever you need to do before you have to sit still for 2-3 hours. Once the infusion starts, you can totally get up and use the restroom if you need to, but one of the nurses needs to unhook you and it just slows down the process. It’s not a big deal, but I like to get in and out as fast as possible.
Upon entering the infusion suite, I’m warmly greeted with a hug from each of the two nurses who run the suite. They welcome and say goodbye to all of their patients this way, which I think is the sweetest thing ever and definitely means a lot, especially during my first few visits when all of this Remicade/infusion/hospital stuff was new and daunting to me.
After that, I get settled in my chair. It’s a comfy recliner, and Cheryl (my nurse) offers me pillows and warm blankets. Oh, yes, the blankets are quite nice. Speaking of warm blankets…
Tip #5: Dress in layers and maybe even bring something warm like a sweater/sweatshirt or blanket. You never know what the temperature in the room will be and you want to be comfortable, so bring a little extra something with you.
Then, she takes my temperate, blood pressure, and fills a bunch of vials with blood, which happens at the start of every infusion visit. The blood work checks for antibodies built up against the Remicade (if there are too many, it’ll stop working), liver and kidney function (both can be affected), and the usual suspects, like iron levels, platelet count, inflammation markers, etc.
Then, it’s Remicade time. On your first visit (and possibly other visits – it just depends what your doctor requests), you might be given Solumedrol (a steroid) through the IV to prevent any sort of adverse reaction to the Remicade. After that, the Remicade drips down and through your veins for approximately 2-3 hours.
I’m attached to the Remicade drip, so I can’t freely move around. I also can’t feel the Remicade going into my veins. It doesn’t burn or anything like that. The only way I know it’s going into my body is watching the Remicade bag slowly empty.
Once the bag is empty, Cheryl flushes saline through the IV to make sure I get all of the Remicade into my system. This takes about 5-10 minutes. Then, the IV is removed from my hand. I make another appointment for 8 weeks out, give the nurses a couple of hugs, and I’m good to go on my merry way.
Right after my infusion, I don’t feel any sort of immediately side effects. I drive home. I sometimes work out. On occasion, I’ll feel more tired than usual, but it doesn’t hit me until later in the day. Usually, I just go to bed early and wake up the next morning feeling totally fine.
Tip #6: Join the Remicade group on Facebook. (It’s a closed group, but just ask to join.) It’s really helpful and makes me feel not so alone when dealing with this disease.
So, that’s what a typical Remicade day is like for me. Although, random side note, after my appointment, I got stuck in an elevator by myself for about 45 minutes. THAT was fun. The fire department came and everything! Ha! Anyway, if you have any questions about Remicade, just let me know, and I’ll reply in the comment section!
Question of the Day
Any questions about IBD? Remicade?
Have you ever had an appointment with a registered dietitian? Was it helpful?
Have you ever been stuck in an elevator?