my gilenya day one experience


Which I lived to tell about. I think. The day is still not over (yes, I’m writing this on Monday 2/2–forgive me), and I considered going back to a medical facility to deal with lingering side effects.

Wait, what?

Unfortunately it pretty much comes down to a medical assistant who was friendly, kind… and seemed to know nothing about what she was doing. I’ve had her before at this clinic, and I also wasn’t impressed then. I love the practitioners (I’ve changed clinics because I’ve disagreed with their philosophy) but the MA’s at this place–yes, more than one–are driving me nuts. (Take, for instance, the fact that they ask us to do a timed walk before every appt. Fair enough, for assessment–but they still wanted me to do it a few days after I had my big abdominal surgeries back in April? Did not compute… but they didn’t get it.)

Anyway, I digress. I somehow thought I’d get hourly EKGs–no, that was just at the end. The hourly bit was just blood pressure and pulse, and general notes on how I was feeling. So I just sat in an exam room, propped on a bed, writing lesson plans, grading papers, listening to Pandora… getting stuff done that I needed to do (and occasionally distracting myself on Facebook. You know, important stuff.)

Each time, my pulse was normal for me (a little over 60 bpm) but my BP was high. (I find out now, in the literature, that Gilenya is known to elevate BP. The MA seemed flummoxed. She also seemed not to know the difference between systolic and diastolic blood pressure–the two numbers–when we talked about coffee’s effects. Did you take a 1-day physiology course?)

Anyway, it was past the halfway point in the observation that I started noticing the effects of the drug (later than anticipated): I felt a slower heart rate, a little tired (from the slower HR), and mild palpitations (premature atrial contractions). All of these are known side effects, but I still needed to be monitored to make sure they were at a safe level.

At one point, I told the MA that I was experiencing premature atrial contractions. As dispensers of Gilenya, I would hope she’d know what they are. But she looked at me, wide-eyed, and told me she’d tell the nurse that I was having “atrial contractions”. đŸ˜€ Wow. Seriously? I sure hope I’m having atrial contractions! If not, I’m in real trouble…

My second-to-last reading, my pulse rate dropped into their unacceptable range. I didn’t know what that was, so I just stayed and kept on working, and the MA went on her merry way. But my nurse practitioner came by a little later, told me I needed to move around a bit… so I did that.

And what should have been my 6-hour (last) pulse reading was really, really low. I was feeling run-down, too, so that makes sense.

The MA got up and walked the halls with me. I had some juice. (My stomach has been so acidic recently, that wasn’t the best option in retrospect. So she asked if I wanted coffee to help my pulse rate. 1. Acidic much? and 2. Won’t my pulse just go back down? She didn’t get it.) This little stroll bumped up my pulse to about 50 bpm. Not good enough. 55, and I was “eligible” for my exit EKG.

So we went back out to the clinic halls and this time, strode around. At which point I said to her… aren’t we just artificially elevating my HR through exercise? Once I sit down and rest, won’t it drop back down? She didn’t fricking get it. She insisted that it would stay high.

And this is the scary part!!! I understand general health/exercise physiology, right? Enough to ask that question? Most people would have no clue and just go with it. She’s a health professional, after all. Hoooooleeee mother of…

Anyway, about 10 minutes of striding the halls, and my heart rate was only about 55 bpm. (Yes. Still that low after gentle exercise.) But I was “eligible” for my EKG, so we did it– I was recorded for 15 minutes. The MA told me I could get dressed, and I’d be “good to go”. She took a few glances at the EKG equipment and seemed satisfied.

Did that mean I could leave? No idea. I waited. And waited more. Fifteen minutes. I stuck my head in the hall a few times. I walked up and down the halls and looked into a bunch of offices. No one around. (Nearly 4pm, people gone for the day?) “Good to go” means “leave”, right? In any case, my premature atrial contractions had calmed down, and I took my pulse a few times, which was between 55-60. I figured I was safe to drive the 10 miles home.

But, about 2 hours later, I got a phone call from my nurse practitioner asking where I’d gone. “Uh… the MA communicated to me that I could leave, I thought.” She told me that yeah, it had been a long day… No, I’m willing to stay a little longer to make sure I’m healthy! But I was just sitting there… longer and longer… and couldn’t find anyone. Apparently they still read my pulse as low, and my EKG looked “OK” but she didn’t use the word “normal” in the phone call. But as long as my HR didn’t drop below 40 that night, and I didn’t get overly lightheaded, all would be well… supposedly. Frequent happening for young, healthy women, I’m told. (I’m still young! Hooray!)

I’ve been going back and forth on going to an ER to deal with the flurry of PACs that come through every now and then… I don’t seem to have any lightheadedness, though, so I think I’m going to live… I feel pretty darn tired, but all things considered with my heart rate having been manipulated all over the place, what do I expect?

Anyway, I need to figure out a way to write up this particular MA, and make note of others. If I didn’t have my chronic health issues to deal with (besides having serious wanderlust), I’d do that sort of work on the side, myself… but would have to pay for the school first, alas.

(Thanks for reading this far…)

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