Guest Voice: Episodes of tachycardia have become my new normal
Being diagnosed with spinal muscular atrophy (SMA) 20-odd years ago was akin to a death sentence. But for the majority of my life with SMA, my health has been fairly stable.
I’ve come to expect that, in the rare instances when I do get a cold, it will be a harrowing experience for everyone in my vicinity, but I’ve had protocols in place to manage breathing issues for practically as long as I’ve been alive. I’m very aware of what to expect when I begin to feel a soreness creeping up my throat.
However, I did not know what to expect when I suddenly began experiencing severe breathlessness and tachycardia last year on Christmas Day. Although these instances became more frequent over the coming days, I noticed that my symptoms were immediately alleviated when I lay down. My mom and I tried to make sense of what was happening while repeatedly calling my medical team in Boston because my heart rate was refusing to calm down.
Some of my symptoms aligned with ones I had previously experienced with a urinary tract infection, so common sense suggested that was the case. We did an at-home urine test, and my mom camped out at my primary care doctor’s office to get an order for an antibiotic.
The antibiotic seemed to help briefly, but soon it was evident that it wasn’t addressing the heart of the issue. For a few days, which were borderline traumatic, my heart rate kept skyrocketing when I did basic, everyday tasks, like sitting up in my wheelchair and trying to have a conversation. Talking, at that point, felt like running a marathon that I hadn’t signed up for.
During a virtual visit with my gastrointestinal (GI) doctor at the beginning of January, it became clear that I hadn’t been hydrating enough for a while. The theory at that point became that I was severely dehydrated, and my home-care nurses were instructed to push a lot of Pedialyte. It helped, somewhat, for a couple of days. Then, the tachycardia and breathlessness returned with a vengeance.
Finally, in mid-January, my lab results came back: I was anemic and severely iron-deficient. My GI doctor put me on 10 milliliters of iron daily, and it still took approximately four months for my iron levels to return to normal. The tachycardia episodes, however, happened almost daily throughout those four months.
My world-renowned doctors couldn’t figure out why they were still happening, which made the process exponentially more frustrating. I had to wear a heart monitor for a week and have a full cardiac workup, which came back clear, thankfully. I was then virtually passed around to my neurologist — who mentioned that my autonomic nervous system could be the culprit — then my pulmonary team, and back to GI.
And, yes, the episodes and influx of doctor appointments quickly grew old. I also had to spend hours lying in my bed watching a show on my phone and waiting for my heart rate to come down when I would much rather have been writing, reading, or doing literally anything else.
The most frightening part to me, then, was that this period of time could have been my new normal. It would have greatly affected my quality of life as I knew it.
Slowly but surely, my iron levels returned to normal, and the tachycardia episodes became less frequent. They do still happen, but the infrequency is much more manageable for everyone involved.
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