Entyvio Day Logistics

Mastermind Weekend 1/16

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I'm Tina

I’m the owner of Carrots ‘N’ Cake as well as a Certified Nutrition Coach and Functional Diagnostic Nutrition Practitioner (FDN-P). I use macros and functional nutrition to help women find balance within their diets while achieving their body composition goals.

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Good morning!

First things first: THANK YOU so much for all of your wondering comments on yesterday’s blog post. I can’t tell you how much each one of them means to me, especially after starting my morning with some not-so-nice ones. Jeez, some people love tearing others down, huh? Hurt people hurt people. Anyway, let’s not focus on that nonsense right now…

So, the other day, I was hanging out with one of my friends when my cell phone rang. It was someone from the Infusion Suite at Mass General Hospital (the contact info is saved in my phone), so I excused myself to answer it.

Before each of my infusions, I receive a phone call (from a human) to confirm that I will be there. I also answer a few questions regarding changes in my health. There are a couple of reasons why this phone call is so important and one that I can’t miss: 1) To confirm my chair in the Infusion Suite. It’s a busy place, and if there’s not enough room, the staff has to make special accommodations. 2) To order my medication from the pharmacy. It’s really expensive ($10,000 per infusion – thankfully, I only pay $250), so the hospital needs to know for sure that I’m coming before they order it.

I take the call and then return to my friend. I immediately apologize for interrupting our conversation and then briefly explain why I needed to take it. Our conversation made me realize that there are quite a few things that I need to do to prepare for my infusion days. So with today being an “Entyvio day,” I wanted to share some of them.

The day before:

  • Confirm appointment and medication.
  • Make sure I’m drinking enough water. This is important with regard to my nurse administering the Entyvio infusion into my vein. A little side note: During my last two infusions, I’ve had terrible experiences with nurses and needles. I’ve gotten infusions for 3+ years now (and blood taken at least a zillion times) and never once had issues. The last time I was there, the infusion site hurt so bad (my face said it all), the nurse offered to give me a heating pad. I also didn’t move an inch for the entire infusion. The time before that, the nurse must have missed my vein or something because it felt so awful, I immediately felt lightheaded and started to see dark spots. I’m usually not a wuss AT ALL when it comes to this type of stuff, but, man, I suddenly have a fear of needles. Hopefully, today goes more smoothly!

The day of:

  • I schedule all of my infusion appointments mid-week at 11:00 or 11:30 AM to avoid city traffic the best I can. Otherwise, I’m sitting in my car for hours.
  • Even though I can usually get to the hospital in about 40 minutes, I’ll leave about 1.5 hours before my appointment just in case and also so I can grab lunch at the Whole Foods near by.
  • For drive into the city, I always bring a water bottle and iced coffee. Consuming this much liquid at once while stuck in the car is definitely a balancing act, and I almost always use the bathroom in Whole Foods as soon as I arrive!
  • I usually bring my laptop to my appointment, but because my infusion is only 30 minutes, I don’t get all that much work done. I’m actually planning to leave my laptop at home today and read a book instead.
  • Because I’m a jerk/like to do things my way, I schedule my infusions every 9 weeks instead of the standard eight. My doctor knows and doesn’t love that I do this, but stretching out my infusions one more week makes a difference to me.
  • Because my infusions are every 9 weeks and my blood work is scheduled for every 16 weeks, the nurses are always confused with what labs to draw. Most of the time, I get blood work done every appointment, which I really appreciate because I like knowing what’s going on inside.
  • Once my infusion is over, I schedule my next appointment for 9 weeks out and give Sue (one of the nurses) a big hug. I think she’s the “head nurse” in the Infusion Suite. She’s super nice and has been there since I started Remicade back in the day. I love that she’s a constant in the office. She loved my tote so much, she bought one for herself and often comments how much she loves her when she sees me! 🙂
  • After I leave the hospital, I’ll sometimes run a few errands at Whole Foods, CVS, and/or vinodivino (wine shop) before I hit the road to drive home.
  • I typically get a headache a few hours after my infusion, so I continue to drink water and take it easy for the rest of the afternoon.

Question of the Day

What’s on your agenda today?

I hope something more fun than an Entyvio infusion! 🙂 Actually, I’m going to Justin Timberlake tonight!!

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16 Comments

  1. Sounds SO much better than remicade + full time job! I have to take a full day off for a 2 hour infusion and am currently at every 5 weeks. Plus, remicade is $24k per infusion- gag me.

    Anyway, I have RA, so different disease = different options, but please count your blessings!

    1. The less I have to be at the hospital, the better! 🙂 Plus, i like that the drug is still effective with a lesser doseage.

  2. Enjoy your book time! That’s a good way to get a little me time in the midst of a not super fun appointment 🙂
    (Sorry for the racket yesterday on your post, but glad to see so many other hard working Mamas come in and affirm what you were saying! Momming is hard, I don’t care who you are or how perfect your kid is, it’s hard. And saying something is hard and not always fun isn’t saying that you hate it or regret it. We can have complex and ‘shades of grey’ emotions about things!)

  3. I always appreciate these posts! Made me realize how many things I do to for my health that isn’t ever a thought to many others. Makes me feel feel strong for doing everything I do, Thanks!

  4. Thanks for sharing your day and experience. I saw on IG stories you were meeting with a new doctor. I hope it went well! Always nice to have someone you connect well with. You said something about wanting to stretch infusions more or wean off. Just curious what they said. Always in shock over the costs of medications,hospital stays etc. have fun at the concert tonight!

    1. He didn’t say no! But he warned me of the risks of going off the drug and asked me if it was worth it. Truthfully, I’m not sure I want to go back to the life I had when I was so sick. I’m actually doing really well right now – so I’m just going to stay on it. My doctor also said that there are so many new drug options (related to gut bacteria and not the immune system) coming out that maybe I won’t be on infusions for the rest of my life. It made me happy that he was so hopeful!

      1. Yay for some hopeful news! I’m hoping new drugs are on the horizon with less side effects. I’m glad you are doing well.

  5. I’m on Remicade so I feel you on the IVs! During one of my hospital stays, an anesthesiologist told me that the IV shouldn’t hurt; if it does, it’s not inserted correctly. So now I just tell the nurse if it’s painful and they re-do it. Just a thought so you aren’t in pain next time!

  6. Thanks for sharing this post! It’s so good for others to know more about what getting an infusion entails. My younger daughter gets remicade infusions for Juvenile Idiopathic Arthritis every 4 weeks (we are at her infusion right now) . Most people don’t know anything about the process so thanks for raising awareness! I’m so glad you’ve found one that works pretty well for you!

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