How to be your own best advocate during infusions

You’re told by your gastroenterologist you need a biologic to treat your IBD and that medication is received through infusion. Thoughts race through your mind–what’s it going to be like hooked up to an IV receiving your medicine? It’s completely normal to feel anxious, nervous, and uncertain. I’ve done self-injections since 2008, and never have needed to receive my medication through infusion, but I know that’s not the case for many.

This week on Lights, Camera, Crohn’s we hear from patient advocate Jenna Ziegler. Jenna was diagnosed with ulcerative colitis in 2014 and has recently added enteropathic arthritis and a rare autoimmune non-alcohol-related liver disease called primary sclerosing cholangitis (PSC) to the list.

Over the years, Jenna has learned how to prepare for infusions so that she can walk into the outpatient center with confidence. Check out her empowering tips for doing so—whether your infusions are at a medical center or at home!

Do Your Prep Work

  • Know if you’ll be given Benadryl. Some biologics require pre-medications that help prevent adverse reactions. These meds may include Tylenol, prednisone, or Benadryl. Find out ahead of time if you’ll be given Benadryl. Knowing you’ll be sleepy at and after your infusion can help you decide if you’ll need a driver and if you need to make arrangements for the rest of your day.
  • Plan out the rest of your day. You may be tired after your infusion—especially if you’re given Benadryl! Weeks before your infusion, make proper post-infusion arrangements .Maybe you’ll want to take the day off work or arrange for childcare so you can take a long nap or reschedule that evening’s outing to another day. Jenna encourages you to schedule time in your calendar to recuperate after the infusion.
  • Know your dosing and required blood work. By knowing your dose and what labs that will be drawn, you’ll feel more in control of your day. Ask your doctor for your dose and what (if any) labs the nurse will draw at your infusion. Then, when you arrive, you can double check that these things are correct.

The Day Before Your Infusion

The day before your infusion is critical: make sure you’re drinking enough water! 

“Infusions require IVs, so it may ease your nerves to do everything in your power to make your veins as plump and visible as possible. I drink one gallon of water the day before my infusion. I chug 32 ounces every three hours and set reminders to keep me accountable. When I do this, my infusion nurse almost always gets my IV in with one poke! Also, a nurse told me that sodium retains water, so eating salty snacks the day before will also help keep water in your veins. Of course, run this by your doctor first!”

The Day Of your Infusion

Today’s the day! Here are three tips to help remove some of those infusion-day nerves.

1. Eat a proper meal. The day of your infusion, you want to fuel your body with healthy foods. This means a balanced meal with both protein and carbs. This is especially important if you’ll receive Benadryl or get blood drawn! 

2. Dress in layers. One of the best things you can do for yourself is make sure you’re comfortable for your infusion. 

“I find infusion centers very cold, so I suggest you dress in layers—just make sure you choose something where your veins are easily accessible. I tend to wear warm shoes, comfy pants, a long-sleeved shirt over a tank top, and a sweatshirt. Cozy and practical!”

3. Bring entertainment. Different biologic infusions vary in length, so if you’ll be there for a while, bring something to keep you entertained! Some of Jenna’s personal favorites are: books, journal, laptop, headphones, and snacks. If you receive home infusions, be sure to gather your supplies by your couch or the location in your house where you plan to receive the medication.

At Your Infusion

When you arrive at your infusion center, you’ll check in, probably sign some forms, and your nurse will show you to your chair. It’s okay if you’re feeling nervous. But remember, as the patient, you are empowered. Here are Jenna’s top tips to ease your nerves.

  • Ask for a warm blanket and pillow. Not only will this help you get comfortable, but placing a warm blanket over your arm will help prepare your vein for the IV.
  • Tell the nurse which arm/vein you prefer. Don’t be afraid to tell your nurse which vein you want them to poke. They’ll probably ask, but if they don’t, don’t be afraid to voice your preference.
  • Take your Benadryl slowly. If Benadryl is one of your pre-meds, they’ll probably either give you a pill or push it through your IV. If it’s via IV, ask the nurse to go slowly. Pushing the syringe too fast may make you feel lightheaded or nauseous. Again, don’t be afraid to speak up.
  • Confirm the info on your medication bag is correct. When the nurse is hooking your medication bag to your IV, it may make you feel better to see the label for yourself. Ask the nurse to show it to you, and you can personally ensure it has the correct patient name, medication, and dose. 

After Your Infusion

You did it! Your infusion is over. Best of all, you’ve already planned out the rest of your day, so now you don’t have to stress about your to-do list. 

“I encourage you to listen to your body—you might want to take a nap, take a hot bath, or have a relaxing night in with your family and pizza delivery. You’ve had a long day and you deserve to destress and relax.”

Remember, You Are Empowered

Over time, getting your infusions will become easier. Normal. Routine. And, one day, maybe even relaxing.

“I would have never thought that I’d find peace in my infusion days—these days that once made me nervous and stressed. But I now see my infusion days as relaxing, self-care days. This will come with time, and it starts with one thing: remembering that you are strong, empowered, and your own best advocate.”

Connect with Jenna:

Website

Instagram

Facebook

Twitter

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