Hey There! Today I’m writing from my infusion chair at the hospital. I figured it might be nice to explain what this experience is like for those of you who are facing this as part of your care, for those supporting someone with chronic illness, and for those who are just curious.
I hope that if you are preparing for your first infusion, this provides you a little comfort and encouragement. It is scary, unsettling, and not fun, but if it is a vital part of your care, then feeling slightly prepared for what you will experience may help just a little bit. I remember they way I felt before my first infusion. It was the same way I felt before I started Humira. Kind of like I was backed against a wall. I had to do something to bring myself back among the living, but none of the treatment options were pleasant or without risk. But, I prayed, gave myself a lot of grace to not worry about hiding how afraid I was, leaned on the support of my husband, and gratefully accepted support from my family, friends and community. I hope you have a tribe of people who can support you through this, or at the very least, one person. Support and encouragement to get you through is key.
Now, lets get into the nitty gritty of infusion day. But, I do want to say that this is my experience only, and if you’ve read my disclaimer you know I’m not a medical professional offering any medical advice. Only my personal account of my own illnesses.
When I arrive at the hospital I am taken back by a nurse. Each facility is different, but mine has private rooms and private bays. They generally have an assigned spot for me, but occasionally I can choose;) Once I’m settled in I have my blood pressure, and temperature taken and some questions asked. Then the nurse starts an IV. The nurses usually ask if I have a preference of where my IV is inserted. When I first began infusions, I had no idea how to answer. But as the year has gone on and I’ve had more IV’s than I care to remember, I can answer with authority now. I never, ever let anyone put an IV in my hands. The veins always blow and it is a painful recovery process.
I have no idea if this is standard, but once the IV is in place I get labs drawn from that IV before each infusion. This saves me a trip to the lab and an extra poke with a needle, #winning. Then I’m given Benadryl and Tylenol and have to wait 30 minutes before they can start my infusion. Once the timer goes off, they hook up my bag of Remicaid and begin the infusion. It is given at various rates over the course of 3 hours, so the nurse comes back regularly to change the settings on the infusion, and check my blood pressure.
I treat my time during my infusion kind of like I treat my time on an airplane, ha-ha;) You are confined to a situation where you need to be able to entertain yourself for a few hours. So I pack accordingly with things to read, do and tools to help me rest. In case you missed my last post, Infusion Day Prep, here’s a look at what essentials are in my hospital bag…
And just and FYI, I am able to get up and use the restroom, I just have to bring my IV pole along with me;) Sometimes I have friends or family come to keep me company, but generally I read, crochet, or make phone calls for appointments. I do find that scrolling through multiple things on a screen makes me feel very queazy, so I avoid relying on screens for entertainment. I also listen to my body and simply shut my eyes to rest if necessary. A nice perk is that the hospital where I have my infusions also offers free reiki treatments and I always accept;) It is very relaxing and sets a nice tone for focusing my healing intentions.
The infusion runs for about 3 hours give or take. Once it’s all done my IV is removed, another set of vitals is taken, and I’m sent on my merry way! I hope this helps anyone who is preparing for their first infusion. It isn’t the way anyone would choose to spend their time, but after my second infusion was done, I decided to accept this as uninterrupted time to focus on myself. You can do this, I am cheering you on! Remember to give yourself lots of grace and accept support from those who offer it.
For those veterans out there, how do you spend your infusion time? What have you found helpful, enjoyable, and encouraging? I’d love to hear!
Take good care,