Establishing a routine eased my worries about Ultomiris infusions

Preparing before and during an infusion day makes the process go smoothly

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by Erin Fortin |

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When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), I was intimidated by the idea of being treated with an intravenous medication and having to strictly follow an infusion schedule. I feared the unknown and wasn’t sure what to expect. Over time, though, I grew more comfortable as I became familiar with the process.

I’m currently being treated with the immunotherapy Ultomiris (ravulizumab-cwvz) once every eight weeks. Here are the steps I follow to get through a treatment day. Perhaps my insight might help you during your own treatment journey.

I start preparing for an infusion a day by drinking more water than I normally do. The goal is to be fully hydrated so that my nurses can easily find my veins while placing the IV. Although I’m not a fan of needles, I’m grateful that Ultomiris is available to help reduce my PNH symptoms.

I also drink plenty of water on treatment day and eat a full meal for breakfast or lunch, depending on appointment time. I’ve passed out from blood draws before, and I’ve since learned that it’s more likely to happen on an empty stomach, so I make sure to be fully nourished.

When gathering my belongings to bring with me to the appointment, I always have a bag with contents tailored to treatment days: a stress ball, a juice box, and my iPad holder. I make sure to restock the juice box and add some snacks in case I get hungry during the infusion. In addition to that bag, I bring my purse, which has daily essentials such as my wallet, headphones, and iPad.

After I hydrate, eat, and get my bags together, I shave my arms where the IV will be placed to avoid having the medical tape pull out the hair there, a lesson I learned the hard way. I’m mindful of choosing an outfit that provides the nurse easy access to my arms, but is also comfortable. Sometimes I do my makeup so I can embrace the “look good, feel good” mentality, but other times, if I’m too tired or running late, I’ll skip it.

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Next, I get my daughter ready and take her to my mom’s house. I’m grateful my mom is available for child care during each treatment. Without her, I’d have the additional stress of finding a babysitter.

Driving to my mom’s house and getting my daughter situated before I leave adds more time to my treatment day. Before she was born, I could go right to the infusion center. On the flip side, my daughter and my mom get great bonding time!

On the way to the treatment center, I like to stop and get a special treat to enjoy while I’m there. Lately, that’s been a cinnamon-raisin bagel.

At the infusion center, I check in, the nurses takes my weight, and I choose where I want to sit. I tend to gravitate toward the same chair every time. Because there are plenty of chairs to choose from, I try to sit in an isolated area for better privacy.

My nurses give me a cup for a urine sample. Because I’m a woman of childbearing age, I have a pregnancy test at each appointment.

After I use the bathroom, I set up my area, taking any of the items I might use out of my bag and placing them on a small table next to me. I learned that trying to reach my bag with one arm after the IV is placed is difficult, so I make sure to take everything out while I have both hands available.

Then my vitals are taken, the nurse places the IV to start the infusion, and bloodwork is sent to the lab. Once those results indicate no concerns, I’m cleared to start receiving Ultomiris.

During the one-hour infusion, I play games on my iPad, draw, listen to music, or do other things to pass the time. When I’m done, I make sure to schedule my next appointment before heading back to my mom’s house to get my daughter. The rest of the night, my energy level usually declines quickly, so I pick up dinner or have it delivered.

When I first started my treatments, I found that creating a routine helped me get into the day’s rhythm. That way, I wouldn’t have to think about what to do next, because my mind and body would already know. Because of that, I used to get the same thing for dinner each time.

My treatment day routine has eliminated many negative emotions, including fear and stress. Repeating the same actions each time creates comfort with the process.

What do your treatment days look like? Have you created a routine? Please share in the comments below. 

Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.