Final Infusion Preparations 1.0

With my first Nexviazyme infusion on the calendar for October 18th, I’m taking care of a variety of tasks that must be completed beforehand.

Today, I dropped by the Infusion Center to get my current body weight and to see, for the first time, the orders for my first infusions on the new drug.

The exact dosage of an enzyme replacement therapy (ERT) treatment is determined by the patient’s body weight. So before the pharmacy staff can mix my first infusion, we needed to determine my current weight.

Measuring my weight may sound like a simple project but it’s not. Thanks to the progression of Pompe Disease, I no longer have enough strength in my legs and hips to stand or walk. As such, I can’t just step on a scale to measure my weight.

In the perfect world, we could use a Hoyer Lift equipped with a scale to hoist me out of my wheelchair and record my weight (think of the scene from JAWS when the fishermen had the misidentified Tiger Shark hanging on display at the Amity Island Pier). This technique is a bit awkward and uncomfortable … and at present, my hospital’s Hoyer Lift scale is inoperable. So that option was off the table.

Over the years, we’ve developed a simpler strategy. We’ve determined the exact combined weight of my power chair and ventilator by first determining my body weight using a Hoyer Lift scale. Once we had my body weight, I’d maneuver my chair (including me and my vent) onto the hospital’s platform scale. By subtracting my known body weight from the combined weight, we had the exact weight of my chair and vent (not including me). We recorded the chair/vent weight on a sticker which we placed on the back of my wheelchair. From then on, I could just drive my chair onto the platform scale. From that total weight, we’d subtract the known weight of my chair and vent and the difference was my current body weight. Easy peasy.

Unfortunately (and fortunately), I haven’t recorded my body weight in almost two years. In that time, I’ve acquired a new set of wheels, the exact weight of which was unknown … until today. Because my hospital’s Hoyer Lift scale isn’t working, I drove my chair onto the hospital’s platform scale, and we recorded the combined weight of me with my ventilator in my new chair. Then, after exiting the scale, we hoisted me out of my chair and the hospital staff drove my empty chair onto the platform scale and added my ventilator. The difference between the weight of my chair and vent (without me) measured against our combined weight equals my body weight. Not fun, but effective.

So, at the end of this hour-long process, we now have my combined chair and vent weight and my body weight. Moving forward, I can just ride up onto the platform scale and we can subtract my chair/vent weight to get my current body weight.

The good news is that, after living through 20 months of the Covid Era, when folks the world wide are lamenting catastrophic weight gains, I’ve somehow LOST fifteen pounds. I can’t explain that for the life of me … but I’ll take it.

… Tomorrow’s entry will discuss what I’ve discovered about my new infusion orders. At least initially, this is going to be VERY different from my prior 235 Lumizyme infusions. More tomorrow!

~ Brian

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