Infusion Day 1.1

10:20am (PST) – 15 November 2021

I’ve arrived at the Infusion Center.

My only premedication today is Tylenol, which I’ve now taken.

My IV is started and I’m on a drip of dextrose and water. I believe we run this dextrose drip for 30 minutes before beginning the actual infusion.

My first bag of Nexviazyme has been mixed and delivered so it’s ready to go when we reach 30 minutes. I’m a big guy. I’m 6’4” and weigh about 250 lbs. Because this medication dose is mixed based on body weight, my overall dose is relatively larger than the average. These enzyme infusions are very viscous and are known to clog the inline filters between the bag and my arm. Because my dose is so large, they divide my infusion into two bags, each with its own filter. That reduces the possibility of clogging the filters … which would require that we halt the infusion and replace the filter.

I had the timing of Lumizyme infusions down to about five minutes. Today, we start a whole new protocol, so I have no idea how long this is going to take.

There’s quite a bit of excitement at the Infusion Center today. I’ve worked with this team for over five years, and they are all as invested in the start of this new treatment as I am!

More later!

~ Brian

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