[Image shows three spoons laying on a laptop keyboard. Overlaid is clipart of torn notebook paper with a red paper clip. It reads “Entyvio Round #2” with the Entyvio (vedolizumab) symbol below it.]
Friday was my second round of Entyvio at the infusion center locally. Rather than driving four hours to Cincinnati for a thirty minute infusion, we were able to have it scheduled to do locally. I woke up early to get ready because I was nervous about my first time being accessed while awake.
I had already had it planned that I would put in my headphones, turn up the music loud, and just suck it up cause it would only take a second, even if it hurt, it would be over fast. I kept repeating that to myself as I picked out a tank top that would hopefully give easy access to my all-access-pass aka my port.
My mom picked me up and we headed off. The infusion clinic was in the same building as the outpatient lab, just on the other side of the building. We parked, headed in and checked in, I filled out all their paper work and got taken back to the infusion area. It was mostly filled with elderly folk with one person who looked in their 30s or 40s.
The nurse was also a bit older, but super nice. She asked for all my info again and then pulled out stuff to start an IV, when I told her I had a port. She seemed relieved and said, “Well that makes this easier!” Which was a relief to me.
So instead she gathered up stuff for a port, we had a bit of confusion over the needle size because the size of the needle they put in that comes with the port, they don’t have elsewhere. But she found something she thought would work, and I trusted her.
As she walked over and cleaned me, I prepped myself and put in a headphone and found a good song. She came over with the needle and I stopped her long enough to press play. Within of second of pressing play, she stuck me. And that was it. A little pressure but not nearly as much pain as starting an IV. I was incredibly relieved and happy. Since I had grown to fear IVs due to being stuck so many times, infiltrations, etc, this was a huge relief and pleasant change. It drew blood and flushed perfectly.
[image shows me from the glasses to upper chest sitting in the infusion chair. I had my black and green glasses on, NJ tube, I’m wearing a grey tank top that has an image of Thor on it, I’m pulling it down to show where the port has been accessed.]
Now I just had to wait for them to bring up my medication. They have the pharmacist deliver the Entyvio, I guess because of how expensive it is. It costs up to $25,ooo for each infusion.
The nurse and I chatted in the meantime. She asked me how long I would have to have my feeding tube, and I explained I wasn’t really sure because I had Gastroparesis. Then she got interested in it because she was like “Well they couldn’t have used an NG then cause the stomach isn’t working so is that an NJ?” And she asked me about what I was getting the Entyvio for and I talked to her about my Crohn’s. She asked how getting my port went, and I told her for the most part it went really well except for waking up was a bit of a struggle because their local numbing didn’t work because of EDS.
[Image shows a clear bag filled with my medicine hung up on an IV pole with a drip and tubing.]
Then they brought up my medication and hooked me up. I asked again to make sure it was only going to be 30 minutes. It was great to have a short infusion instead of like Remicade where it was 4 hours, which for me became 8 hours because of a reaction I had to it. I thought 30 minutes would go by a lot quicker but one can only scroll on social media for so long before getting bored. I went to download a game, but I didn’t have any wifi so by the time the game had downloaded, the IV pump beeped letting me know that my infusion was already over.
The nurse helped remove the tape and de-access me. And after a small cotton ball and paper tape, I was free to go! Now only 12 more weeks before I will know if it even is working!