Posted by The new infusion drama is a lot like the old infusion drama: unnecessary, full of bureaucracy, and of course, it’s stressing out nurses and patients alike.
My January infusion was pretty uneventful- I arrived, I was set up (they found my vein right away, yay!), and I sat down and worked. When it was time to schedule the next infusion, the head nurse told me that she had been informed that the practice decided it would not carry Inflectra anymore. The same Inflectra, that my insurance forced me to switch to a year earlier (and which I am still salty about!). I had two options- I could switch to Renflexis- another biosimilar and continue to get my infusions at the practice, or I could go to a different infusion center. I wanted neither! This is the longest time in my life I have ever been in a stable remission, why fix something that isn’t broken? I also did not want to go anywhere else- after almost seven years, I know the nurses, they know me, they give me the appointments that I want (for the most part), have planned around my travels and schedules, and I can combine my visits with my gastroenterologist appointments- at least I did in the past. So either choice, I thought, would be bad.
Well, it turns out I didn’t have one anyways!
The head nurse called me again, telling me that she checked and my insurance wouldn’t cover the Renflexis anyways, unless it was absolutely necessary. Next, I had the choice of infusion center to which I would transfer. F- if I know! I actually said that to her, as I was frustrated, but made it very clear I wasn’t frustrated at her! She worked really hard to help me! She suggested one close to the practice and told me that she informed them of when I am due to get my next infusion. But, because they are a new caregiver, and I am a new patient to them (still within the same clinic affiliation though), I was told that they require a new TB and Hepatitis test- so I needed to come to the lab to have blood taken. Me: “but they know I have been a patient here, and that you wouldn’t give me these medications if I had either Hepatitis or TB (aside from the fact that I am inoculated against almost all of the Heps!). Still, the bureaucracy required it.
So on my non-teaching day, I drove across town to get my labs done, I mean, it’s only time out of my day, so why not. I arrived, told them my name, and said that gastro sent down my lab order (they are in the same building). “They always say that” the snarky receptionist said, but managed to pull it from the computer and held it up so I could see it. “Does this look right to you?”- Am I a phlebotomist? I saw my name and nodded, and for what it’s worth, was waiting less than ten minutes before it was my turn.
Now I am waiting for the new Infusion center to call me and give me a new appointment, hopefully within my infusion time frame. I truly hope they can be as accommodating as my current infusion center, that they know what they are doing, and that everything works smoothly.
I try not to worry too much, because to quote my grandma, water will run down the river whether you worry or not (perhaps this sounds better in German, I don’t know). But of the things I did not need in 2023, changing my treatment and infusion location was one of them. What a nuisance.
The Morbus Crohnicles 