Before the Ty-Ty Sisterhood began our journey with Tysabri last month, both my Ty-Ty partner and I did lots of research on the drug (and also on lots of alternatives). I even took the time to watchLauren Parrott’s You Tube video about her first Tysabri infusion. One of the reasons for many of my anxious times is the fear of the unknown. I need know what to expect in all situations, whether I’m traveling, attending a meeting for work, or having an IV stuck into my arm to fill me up with a rather new, semi-controversial M.S. drug. Lauren’s video provided me with solid footing for my own Tysabri infusion experience.
Because all experiences are slightly different, here’s a recap of what Brenda and I experienced three weeks ago at theHamot Infusion Center here in Erie, PA. Brenda arrived long enough before me to have already waded through her stack of new patient paperwork before I even walked through the door (overachiever!). When I arrived, I asked if Brenda was already there and they said she was already ten steps ahead of me. I explained that we were going to try to go through our infusions together, hoping they’d be open to the idea of double the fun in their infusion area. (At this point I had no clue what it would even look like inside or if they could accommodate the two of us on the same schedule).
After the mound of paperwork was finished (they actually didn’t have mine prepared, they knew I had an appointment, but some computer glitch didn’t print my info out for them ahead of time), I was escorted into a private room. Erie’s the third or fourth largest city in Pennsylvania (there is constant debate as to which it really is), but still it’s still small enough to always know someone everywhere you go. We’re a three-degrees-of-separation kind of town. As it turns out, one of the nurses was previously married to the brother of a good friend of ours. I was relieved to know she and her former brother-in-law were still friendly with one another since she was going to be the one sticking the needle into my arm. Prior to that step though, she ran me through a litany of questions – all part of the Touch Protocol designed to screen out immune compromised patients who may be susceptible to PML. With each answer I was worried a buzzer would sound and I’d be told I couldn’t go through with the infusion. Apparently, though, I passed with flying colors. I assumed Brenda had fared the same since I didn’t see an ejection button on the chair or a retractable roof above my head. I surmised she had already been moved on to the next step.
Once my needle was in and ready for action, the nurse took me into the main area of the infusion center. What great nurses they were! They had set up an area in the back corner so both Brenda and I could sit side-by-side. Curtains separated us from other patients, although we were loud enough that curtains or privacy didn’t really matter. The center provides a television for every patient, with headphones. Chairs reclined comfortably, I was given a warm blanket and pillow, and a menu showing various lunch options and a huge selection of snacks and beverages sat on the table between Brenda and me. Wine or margaritas weren’t on the list, but it was still a nice menu none-the-less.
As I recapped in an earlier article, our nurse visited both of us every 15 minutes to check our temperatures and blood pressures. One hour of infusing Tysabri was followed by one hour of a saline drip. Three hours after I walked in the door I was done. No pain (other than the prick from the needle or the brief “arrrgh” from the removal of the tape holding the IV in place) and off we went. Walking out the door, I already felt at home, with the whole staff saying goodbye and planning for our July infusion “event.”
In just a little over a week the Ty-Ty sisters will be at it again, heading into Infusion number two. I’m guessing it won’t take a full three hours this time around since the mass of paperwork is now completed. I’m curious, though, to see if we have to go through the list of Touch Protocol questions again. (What if conditions or situations changed over the last month? Will the ejection chair rear its ugly head)? We’ll see.
When I compare the once-a-month infusion process with my previous once-a -day injection process, it’s a no-brainer to me that this new process is much simpler and much less painful. But, we all know it’s not about simplicity or pain, it’s about the effectiveness of the D.M.D. Only time will tell on that front, but in the meantime I’m looking forward to the hospitality of the great folks at the Hamot Infusion Center again next week and I’m already planning my menu selections!