3 ways I make Rituxan, IVIG infusion days feel special
Six-hour infusions can be challenging, so this columnist treats herself right
Do you remember when you were in school and a field trip was planned?
I remember the excitement these trips would bring. The destination wasn’t important. The special lunch, the new clothes, and the thrill of the unknown excited me. My lunch was full of things I normally wouldn’t eat on a school day: a submarine sandwich, a soda can wrapped in tin foil to keep it cold, a bag of potato chips, and a prepackaged brownie. I felt so special on those days. Just thinking about these field trip lunches makes me smile.
Infusion days, to me, are no different from those school field trip days. Making myself feel special even when I know there may be side effects from my Rituxan (rituximab) or intravenous immunoglobulin (IVIG) infusions is important. It is hard to sit six hours in a chair waiting for the medicine to drip slowly into my veins. I try to make these days special so that I look forward to them rather than dread them.
I have eosinophilic granulomatosis with polyangiitis and hypogammaglobulinemia (low antibody levels). For many years, I have received Rituxan infusions every five months and IVIG infusions every three weeks. These infusions can be complex, and I tend to have anxiety about them even though I’ve been receiving them for several years. When thinking about how to reduce my infusion day anxiety, I realized that I need to feel special on those days.
Whether I’m doing an infusion at home by a certified infusion nurse or sitting in a chair at an infusion center surrounded by other patients and medical professionals, the following things make the long days seem shorter.
Socks
Infusion centers are notoriously cold. Members of the clinic staff give me a blanket and sometimes offer hospital socks with grippy rubber soles on the bottom. For me, socks matter. I have a few unique pairs that I wear only on infusion days. They are soft, keep my feet warm, and make me feel special.
Movies and TV shows
I save movies and TV shows on my laptop or phone to watch and pass the time during my infusions. I often watch documentaries because they require my attention and keep my mind off everything happening around me.
If I can’t concentrate, I’ll watch a reality cooking show to avoid overthinking. These shows help me ignore a noisy infusion center. I put on my headphones and become engrossed in the presentation.
A special lunch
As you might have guessed, I am food-motivated. Food brings back memories and can make me feel special during infusion days. I like to get a small insulated bag and fill it with food, drinks, and treats I eat only occasionally. I’m careful to pack foods that have little odor and don’t contain airborne food allergens like nuts.
I typically pack a bottle of orange juice and a can of ginger ale in my bag. Both of these drinks are soothing for me and help to keep me hydrated. Since infusion times average about six hours, I also pack a sandwich. (Yes, it tends to be one of the memory-inducing submarine sandwiches from my childhood.) I cut it into small servings to eat as much or as little as I like.
I also pack pre-cut vegetables and a little cup of my favorite dip. Carrots, celery, and zucchini are my favorites. Sometimes I pack cheese and pretzels, which also are great with the dip. While I skip the salt-laden potato chips, I do include a special sweet treat. I like chocolate chip cookies or brownies.
Infusion days take work. They can be long, uncomfortable, and anxiety-inducing. Making myself feel special helps get me through the day, and sometimes, I even look forward to my next infusion.
How do you make yourself feel special on infusion days? Please share in the comments below.
Note: ANCA Vasculitis 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 ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.
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Comments
Rhoni
I too have rituxmab infusions ,yes it’s a boring day ,but well worth it . I have acne vasculitis ,and in remission .I have just come off prednisone ,and feeling so much better . I have fortnightly blood test , to keep a check on my lungs and kidneys .I will have more infusions at the end of the year and a M R I . Stay well everyone .
Bonnie
I’ve been having monthly IVIG infusions for the past 6 years. I usually run a temp of 101-102 a day later and feel pretty awful for about 2 days. I wonder if you have experienced the same effects after yours. I started on rituxmab but had neutropenic fever as a result. Instead, I underwent 9 months of cytoxin(sp?) which helped get me into remission. Even though I’ve managed to stay out of the hospital for the past few years, I still dread IVIG days each month and plan my life around the inevitable side effects. Thank you so much for your helpful posts. I always feel better after reading them!!
Rhoni
Hi Bonnie . Hope you’re feeling better today ,I am in remission of ANCA Vasculitis ,I will have another infusion in a couple of months . Resprim forte tablets 3 times a week . I feel really good ,but I do have a fear of it coming back .Do you have any fear or it coming back ? I go back to the Vasculitis Specialist next week ,hopefully he will be happy with me .Stay well everyone .
Suzanne DePaolis
Thank you, Bonnie. Yes, I too, plan my life around the side effects of IVIG and Rituxan. It's difficult but worth it to keep my EGPA under control.
Onco Especializados
I completely understand the importance of making infusion days special to ease the anxiety and discomfort that can come with receiving treatments like Rituxan (rituximab) and IVIG. It's amazing how small things like unique socks, entertaining movies, and a carefully prepared special lunch can make a significant difference in how one feels during these long days. It's all about creating a positive and comforting experience to look forward to. What a great way to approach it! regards from Mexico