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A Stumble on the Road of Living with a Chronic Illness
Oh yeah, chronic means it comes back…
In December 2022, I shared about my then-recent PNH diagnosis and how I was dealing with the initial stages of diagnosis and treatment.
It’s been two years since that post, and something major just happened that truly shifted my perspective.
Let’s quickly catch you up to now.
I started Ultomiris, the only medication that was available at the time, in December 2022 and stayed on it until July 2023. It did not make me better, but it kept me from getting worse. Throughout those months, my hemoglobin count stayed in the 8s (normal is 11.5–13.5).
In July 2023, I started on a twice-weekly at-home infusion medication called Empaveli. My numbers immediately shot up to normal.
I’ve been diligent about taking the Empaveli at home, and I’ve stayed in the normal range ever since.
I basically said to myself, “Great, the PNH is managed. I’m good to go. I just do the meds for the rest of my life, and I don’t have to worry about it.”
For over a year, everything has been totally fine.
Until last week.
Last week was Thanksgiving in the US. My husband and I took Monday through Wednesday off and we drove to Washington DC to play tourist for several days before heading to my family in Virginia to celebrate the holiday.
On day 3 of playing tourist, I caught a nasty head cold. My energy went down, but I was sick. It made sense.
Day 3 was spent in bed watching movies at the hotel.
Day 4, I felt a little better, or at least figured I could push through. We went to more museums and rented electric scooters to zoom around the National Mall. It was SO fun.
But afterward, my husband noticed my coloring was off, and I couldn’t seem to get warm.
