It’s been a while….

Hello Friends!

It’s been a while! A long while indeed, so a little update about me, my Crohn’s and its management.

I have finally found a solution to my infusion drama! I was switched to a home service, and have been receiving my last few infusions at home. I wanted to with the update until I was certain I would continue with this service. But I think I will.

To be honest, I was nervous at first, after all, I am letting someone into my home, and have to spend hours with them. Would they want to be entertained and hosted? What is the etiquette for home nurses?

My sister-in-law, a nurse herself, calmed me down, explaining that the nurse would have enough paperwork on her own to get through, I shouldn’t worry.

So basically, I have my assigned nurse for all appointments. Before my initial appointment, I received a large box of supplies, from an portable infusion stand, to an emergency kit. My medication is also overnight mailed to my house. The one thing to remember is to take the medication out of the fridge before she arrives, as your infusion can otherwise get really uncomfortable and cold.

We have settled into a routine: She arrives, and I have everything ready and prepared for her (not all patients do that, she says), and she sets up. She has her laptop with her, a thermometer, blood pressure meter, and my vitals are taken. Then she begins to mix the medication, and sets up the pump.

 I usually get solumedrol and tylenol to help with the side effects of Inflectra, but I may have to decline this in the future. Previously, all of my infusions were in the morning, I would always ask for the earliest appointment in the day. Since my nurse has other patients, most of my appointments are early afternoon, and that means that if I go to bed at 10pm, the prednisone is still active in my bloodstream and I am ready to dance the samba, clean the kitchen (or dance the samba while I clean the kitchen?), do laundry, everything but sleep. Prednisone insomnia is real. But this is a small collateral damage, perhaps I may not need the solumedrol anymore.

Another small disadvantage is that my nurse is not allowed to have the quick pumps that the infusion centers have, so my infusions are usually a little longer. The advantages however? I am in my own home. I can have snacks, coffee, whatever I want. Thanks to the ultra-light infusion stand, I can go to the bathroom without a nurse having to unhook and hook me up to my infusion again, also a plus. My nurse actually turned out to be a really nice and compassionate lady about my age. More than that, she has a chronic illness herself, and perhaps has a better understanding of her patients’ lives.

So, all in all, the infusion drama has led to something good- I still wish there was a quick shot I could get (sadly Humira didn’t work for me!), but this is as good as it gets.