Adventures with Anaphylaxis

Every time I think I’ve run out of things to write about, life throws me a curveball.

Over the past couple of years, I’ve been getting allergy shots on a pretty regular basis. The science behind allergy shots might seem a bit counterintuitive: If you repeatedly expose your body to an allergen, the hope is that with time, you’ll react less intensely. I’ve had all sorts of allergies since I was a kid, from cats to ragweed, and no concoction of antihistamines seems to help. Eventually, my allergist suggested shots.

It’s a commitment. In the beginning, you get shots once a week, and after about six months, you spread inoculations out, with a maximum of 28 days between doses. You do this for up to three years. I wasn’t altogether terribly thrilled by the idea, but I went along with it, desperate for relief from hives and itchy skin. Everything has gone smoothly — until yesterday.

When first starting the program, a nurse administering the shots will tell you about anaphylaxis. You’re exposing the body to something you’re vulnerable to, so reactions are expected, such as itchy skin, dry eyes, or heartburn. But at a certain point, the reaction becomes dangerous. A very real chance exists that your throat might swell so much you can no longer breathe. Because of this, you have to wait around for 30 minutes after receiving the injections to make sure the reactions won’t be life-threatening. Sitting in a waiting room for half an hour is a bit of a drag, but I usually have my phone with me and try to get as much schoolwork done as I can.

If the reaction is life-threatening, you get shot with an EpiPen. My reactions have always been pretty intense, but they don’t bother me all that much. Apparently, I have a high threshold for pain because my nurse always tells me people complain about reactions that barely even register as an annoyance on my radar. These past few times, though, my reactions were worse. Noticeably so. I usually shrug it off, but yesterday, my lip swelled up for the first time.

Interested in SMA research? Check out our forums and join the conversation!

You can probably tell where this is going.

I told my nurse, who asked if I wanted an EpiPen. I said no, I was fine, I felt OK. But my throat was scratchy, my face was blotchy, and my chest was breaking out in hives. She called my allergist, who responded immediately: EpiPen. The nurse jammed the needle in my thigh and sent me off to triage, which then sent me to the ER via ambulance for a four-hour observation period.

Through all of it, I insisted I was fine. And really, I was. The adrenaline kicked in, my heart started to race, and about five minutes later any symptoms of anaphylaxis were gone. But they had to follow protocol. I’m glad they did. They wheeled me out of the clinic on a stretcher, and my favorite receptionist waved at me from behind the front desk. I laughed and smiled back.

They shot me up with Benadryl in the ambulance, so I was a bit drowsy, but not too drowsy to philosophize. Usually, when I go to the ER, it’s because I have pneumonia and my oxygen stats are alarmingly low. One time, my service dog ripped my G-tube out and my dad drove me down the interstate with a thin piece of gauze covering the literal, gaping hole in my stomach. I’m rarely ever cognizant, but this time I was, and all I could think was how strange it all was.

I’m never ungrateful for my mom’s health insurance or Medicaid or medical assistance. I’m never unaware of all the people in the world who can’t access services with the same amount of ease. But days like yesterday, lying in a stretcher in the back of an ambulance, watching cars and trucks dodge in and out of focus … days like yesterday make me grateful. It could’ve been a whole lot worse, but that didn’t stop strangers — EMTs and nurses and clinic receptionists — from fighting for my life. When I think of it that way, it’s wild and wondrous and more than a little humbling.

I spent several hours in the ER watching reruns of “The Office” and thanking my personal care assistant (PCA). Her 2-year-old daughter kept a cool head — cooler than mine probably — and I love her for it. My parents came to get me after they got off work and we went to Perkins for dinner. I ordered a slice of caramel apple pie to go and proceeded to have the worst night’s sleep, probably due to the EpiPen.

I don’t know why I think I’ll run out of things to write about. Like I told my PCA as they wheeled me out to the ambulance, it’s always an adventure.

***

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.