: March 2015 :
Welcome back to part two of a special three-part series on Remicade!
Last week, I discussed my experience receiving my very first Remicade infusion. It was peachy keen! No obstacles. No issues. Just some nerves that the hospital blankets and Benedryl put to sleep 🙂
Today, I’d like to share my second Remicade infusion experience. Let’s just say, it’s quite the opposite of my first infusion.
I want to communicate both ends of the spectrum to give you insight and awareness; and more importantly, I want to help equip you with ways to avoid the experience I had so you can go into your infusions as a confident, strong, and knowledgeable self-advocate.
So, without further ado, let’s plunge into part two!
My second infusion was two weeks after my first. (Patients typically receive infusions every eight weeks, but when first starting out, you have to introduce it to the body slowly which is usually done at week two, six, and then every eight weeks.)
So for this second introductory infusion, I strode confidently into the hospital. My first one went extremely well and I was feeling AMAZING from the Remicade. To be honest, I was probably too self-assured because, looking back, there was still so much about Remicade and infusions that I didn’t know (and I was about to find out the hard way!)
After the usual weigh-in, the technician escorted me back to the patient lounge. I was hoping I’d get the same lovely nurse as the time before, but I was paired with a different nurse today.
As she was prepping me for pre-meds, I was slightly taken aback. She seemed scatterbrained and chatty to the point where she kept interrupting herself. Her hands flew across her portable table, dropping items and plastic wrappings everywhere.
My confidence level dropped a little because she had to ask other nurses questions about my pre-meds and the equipment needed. But I ignored the onset of nerves and waited as she gathered all the materials and answers she needed.
Next Up: Pre-Meds
I swallowed the Tylenol pills with ease and was ready to insta-sleep from the syringe-given Benedryl. But instead of giving me the Benedryl from the hand-held syringe, the nurse hooked me up to the IV machine.I mean, I’d eventually have to get set up with it anyways for the Remicade—this was just an alternate way of getting the Benedryl into my bloodstream.
She poked my veins (several times—ouch!) and finally located a vein.
Once I was finally attached to the IV, she linked it with the Benedryl. And here’s the thing: When you’re hooked to the IV on the machine, there’s a dial where you can choose the rate at which the medications are pumped into your veins.
With my little experience and knowledge, I had no idea what was about to happen when she nonchalantly turned the dial up all…the…way…
Everything started turning bright. It began with fuzzy light dots overcoming my peripherals and making their way toward the center of my vision.
I felt like my head was filled with nothing but air, and it seemed to detach from my body and float away.
My fingers, hands, arms, legs become heavy, burdened by the weight of themselves.
As I started to lose consciousness, I remember becoming extremely nauseous as my head nodded to the side, unable to stay upright.
The nurse came running over in a panic turning off the dial and asking if I was okay. I don’t think I answered. She then grabbed equipment to check my vitals, which of course, resulted in her reading me an extremely low blood pressure.
“Girl, you’re hypoglycemic! We can’t give you the Remicade today, you need to go to the ER!”
WHAT!? This news helped me slowly wake up—still nauseous and lightheaded—and thoughts clouded my mind. No, I need Remicade to keep me on track…I think I might throw up…Why did you have to turn the dial up so high?
Still in a frenzy, the nurse hurdled over to her supervisor to ask her what to do. She suggested she call my gastroenterologist to ask for her direction. Another nurse brought me juice and I waited in that chair for what felt like forever as they tried to get a hold of my doctor.
Once they finally got her on the line, she told the nurse exactly what I was hoping she would: to let me rest until my vitals return to normal, give me the Remicade (because I really needed to get it in my system!), and take me to the ER afterwards to check on the possible hypoglycemia (low blood sugar).
The Remicade Itself
Phew. Sigh of relief. I was getting my Remicade today. After sitting a while under the blankets letting everything return to normal, they took some blood samples for testing and cleared me for the Remicade.
The infusion itself went well, but I was on edge every time the machine would beep, alerting the nurse to increase the rate for my Remicade. I knew I shouldn’t be nervous for that—it wasn’t the Benedryl! Yet, I watched with wary eyes, analyzing the nurse’s every move, unable to fully relax because I felt like I had to keep track of every button she pressed.
This infusion wasn’t nearly as peaceful as the last one.
The process completed without further hiccup. But now I couldn’t leave to go back to campus; I had to go to the ER to get my blood sugar checked out.
So they escorted me in a wheelchair downstairs (at least the ER was in the same building as the infusion center!), dropped me off, wished me luck, and left.
The Emergency Room
Uhhh. What am I supposed I do? I’m in this busy room filled with white coats flurrying by, clipboards clacking, and beeping monitors echoing throughout the space. Lost. Out of place.
I explained my situation to the man at the window, and he had a technician lead me back to a hospital bed. I changed into a gown and a doctor strapped buttons and monitors throughout my body: chest, ribs, back, fingers. I can’t remember everything he did, but the process took a while as he ran the tests.
After the testing was done, I was released from the hospital bed, but I wasn’t allowed to leave until they got the results.
This was the part that took forever; I was literally there the rest of the day. Bored out of my mind. Frustrated I was here in the first place for something I’m fairly certain was NOT hypoglycemia and NOT my fault. Worried about the financial cost this trip would incur.
Hey, at least they had free sandwiches…
Finally, at the end of the day, the energy in the room started to die down. There were fewer people, less doctors scuttling and more doctors walking, and I was starting to think they had forgotten about me.
After a bit more (frustrated) waiting, they finally located me and gave me the results.
“You’re not hypoglycemic, but you experienced a hypoglycemic episode, likely caused by too much Benedryl too fast.”
Ha. Just as I suspected. Remind me to ask for a different nurse if I’m paired with her next time, I thought hotly. He also suggested to help avoid similar situations, to eat protein with breakfast and not just carbs. Duly noted.
They excused me from the ER and I drove back to campus annoyed, let down, and exhausted. It was a long day, but at the end of it, at least I had Remicade in my system.
Boy, that was a long day. I learned a lot though, including some ways for me to stand up for myself for future infusions. Here are some tips on ways to be your own advocate I’d like to share with you if you or a loved one is new to Remicade and has an infusion coming up:
1. Weigh Yourself at Home
By doing this, you know your weight and you can calculate how much Remicade you should be getting that day.
Remember, the formula is: Remicade Dosage = Xmg Remicade x Your Body Weight (in kg)
If your scale only gives pounds, take your weight in pounds and divide by 2.2. This is your weight in kg.
At this time, I weighed around 125 pounds (57kg) and was receiving 5mg of Remicade per kg: a total of 285mg of Remicade per infusion.
2. Confirm the Medication Package
Before they start infusing the Remicade, ask the nurse to show you the med package. Ensure that it says:
- Your name,
- The correct drug name, and
- The correct mg that you calculated in step one.
3. Go Easy on the Benedryl
You can ask the nurse to dose you the pre-meds slowly. Every single infusion after my second one, I told the nurse to please give me the Benedryl at an extremely slow pace. I shared this experience with them each time, and they always understood.
Some hospitals may give the Benedryl orally, so this may not be as much of an issue. But if you get it intravenously, ask them to go slow, and you can also request that they give it to you via syringe instead of the automatic IV machine.
4. Raise Concerns to Your GI Doctor
If you feel that the dosage of Benedryl is too much, bring it up with your gastroenterologist.
My second infusion was my only experience passing out from the Benedryl, but in future infusions, I’d still become lightheaded and very nauseous.
I told my doctor and she cut the dosage in half, which made a world of difference in future visits.
Being your own advocate is all about open communication with your nurses and your doctor. If you have any concerns, questions, don’t hesitate to bring it up to them. Communication is key, so don’t be shy when it comes to your health!
These are some ideas about how to be a confident self-advocate.
I’m absolutely not saying that nurses or doctors are incompetent.
What I am saying is you can help ensure you receive the best treatment possible when you are equipped with knowledge and unafraid to communicate your concerns and desires.
This second infusion was not a fun experience for me, but it was a great learning experience that taught me lessons that I carry with me to this day.
Don’t hesitate to stand up for yourself, especially when it comes to your health and quality of life.
You are empowered!
In The Comical Colon’s Facebook group, let’s start a conversation:
Have you had a negative experience with Remicade or another biologic? What did you learn and what ways has it helped you become a better self-advocate? We’d love to hear your story in the private Facebook group!
I truly believe that the way to bridge this disease type’s chasm of alienation, fear, being misunderstood, etc. is to engage in community and share our experiences to help others along their journeys. Let’s learn to share our fears, our trials, and our triumphs to find the comical in the deepest, darkest crevices of our guts.