Infusion Day 1.4

11:40am (PST) – 15 November 2021

Just completed my first hour of my first Nexviazyme Infusion!

All systems GO!

We just increased my infusion rate to 150ml per hour. In a half hour, I’ll be at my maximum rate.

All vital signs are good!

The hospital pharmacist just stopped by to say hello. She is relatively new to Sierra Nevada Memorial Hospital but we’ve met and talked before. She reported that mixing Nexviazyme is so much easier than Lumizyme. Both of these medications need to be reconstituted by hand. Lumizyme was packaged in smaller vials and the pharmacy had to hand-mix forty vials for my dose. Nexviazyme is packed in larger vials so the pharmacy only has to mix about half that number. So they’re very happy about that. The Pharmacist also told me that my second bag of meds is already mixed and delivered. So when this first bag is done, we’re ready to move right over to the second. No waiting!

My first four years of Lumizyme infusions were administered at UC Davis Medical Center in Sacramento. They’re a huge operation and have three separate infusion centers. During my time with them, they were infusing eight or nine Pompe Disease patients as well a several with other Glycogen Storage Diseases (e.g., Fabry Disease, Gaucher’s Disease). They were a well-oiled machine at UCD.

Since I moved back home to Grass Valley in 2016 and relocated to Sierra Nevada Memorial Hospital, I’m the only patient at this hospital with Pompe Disease (or any GSD, for that matter) and it’s a big deal for this relatively small hospital to be treating me here. Over these five years, all of the infusion nurses, the pharmacy staff, and the hospital administrators have taken a real interest in my case, my care, and these treatments. They’ve been remarkably embracing of treating me and I’ve made a lot of friends here.

When I lived in Chico, the local hospital – Enloe Medical Center – refused to take on this medication or to administer my infusions. That decision was based at least in part on the exorbitant price of these infusions – roughly $75,000 each. The fact that my hometown hospital didn’t bat an eye at taking on this treatment and the way they’ve always worked tirelessly to accommodate me has always made my infusions here seem special.

As I mentioned in an earlier post, there’s a lot of excitement here today as we start this new treatment!

Feeling very grateful today!

~ Brian

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