A Bump in the Road

It’s now Day +22. That’s a lot of days since the last time I wrote. That probably means things haven’t exactly gone perfectly smoothly. At Day +8, I was on a good path, with white blood cell counts and platelets rising at a healthy pace, and I wasn’t feeling that bad. My appetite was off and essentially limited to foods and drinks that I would NEVER eat in my normal life but that were all I wanted/could tolerate: Dunkin Donuts sandwiches for breakfast, pasta with butter (and nothing else) for dinner, and orange Gatorade and vanilla Boost for hydration and whatever other benefits they could provide. In my prior life, I would have viewed all of these items — including white pasta — as some version of “toxic” and detrimental to my health. Cue the universe laughing again, or as Julia Sweeney might put it, “God Said, ‘Ha.’”

Then I started getting fevers. Fevers can be dangerous when in the midst of the transplant process because they can mean infection that the body may not be able to control. Fortunately, since my white counts were going up, I was not at my most vulnerable, and following lots of testing, we learned that I probably did not have an infection. Instead, I most likely had what is known as “engraftment syndrome,” where the body is overreacting to the transplant resulting in fevers and other side effects (in my case, I was also getting a rash on my arms and legs). Engraftment syndrome often takes care of itself, but in some cases it gets more aggressive. I generally didn’t feel that bad (I couldn’t tell when my fevers went up or down, which was weird) and was fine waiting it out.

The fevers would fluctuate throughout the day. For a day or so they seemed to be trending down. Unfortunately, they then started trending up. From around 101, to around 102, to around 103. Once they hit 103, the Dr. at the outpatient clinic decided to admit me to the hospital because she wanted me to be monitored and attended to 24/7.

I spent 3 days inpatient at the hospital. During that time, with the help of more steroids (the typical treatment for engraftment syndrome), my temperature dropped to normal. I felt physically fine while I was in the hospital and I liked the team of doctors (including an infectious disease specialist and dermatologist, who confirmed the rash was likely from engraftment syndrome), who gave me plenty of time and attention. And clearly they did their job, as I got out of there relatively fast and am now on the path to head home soon. But it was an awful experience because much of the other staff seemed careless in terms of Covid and hygiene protocols (believe it or not, more than a couple of nurses and staff members seemed unaware — or didn’t care — that wearing a mask BELOW THE NOSE does not protect others). I wondered if due to their cavalier attitudes, I might actually get a serious infection that would have made my situation worse and kept me there longer. Fortunately I made it out of there in a relatively short time.

I left the hospital two days ago. Now I’m back at the house and the fevers are gone (thanks to the steriods, which unfortunately I will need to continue to take for a while). The rash will take longer but doesn’t itch or bother me. My blood counts and other lab results (electrolytes, etc.) are in good shape. I’m eating well but am a bit dehydrated so need to remember to drink as much as possible.

I’m scheduled to meet with one of the Drs at the outpatient clinic on Tuesday for my discharge appointment. Unless anything changes (always possible), I will probably be on my way back to LA later this week. Fingers crossed!

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