Yesterday I read a tragic article about a 13-year old girl, Natalie, who died from anaphylactic shock due to accidentally ingesting peanut butter. After reading the first few sentences of the article, I grew angry with several questions racing through my mind. Why the hell didn’t they have an EpiPen on hand? Why did she eat something without checking and rechecking the ingredients first? Why did EMS not get there fast enough? Did they not have Benadryl on hand to slow the reaction?
Reading further, I was horrified to learn that her father was a doctor. The girl bit into a rice krispie treat that she had eaten several times before with no reaction. They did have an EpiPen on hand, two in fact. They gave her Benadryl and three EpiPen’s (an extra one the family camp provided), and even after EMS arrived they were still unable to save her life.
It was a perfect storm of events, a freak accident. They did everything right, and the poor girl succumbed to anaphylaxis while her horrified family helplessly watched.
While sadness was the first emotion that I experienced after reading this article, fear was a close second. It is my worst nightmare, my literal worst case scenario. When I was in therapy, one of the topics we discussed at length was my fear of dying from anaphylaxis. At that time, I had experienced anaphylaxis about twice a year for the past 23 years, and let me tell you, it never gets any easier or less scary. In fact, it gets more terrifying as you get older. You realize, with a fully developed cerebral cortex, how very easy it is to die doing something as simple as eating a cheeseburger, or drinking a margarita from Chili’s.
I finally had a breakthrough with my phobia when my counselor made the points that A. I always, ALWAYS carry my EpiPen with me wherever I go B. It is impossible for me to die from anaphylaxis if I have my EpiPen. Naturally, this led me to C. I’m not going to die from anaphylaxis. Phew, my panic attacks eased up and I realized that hey, one swift jab of a needle in my thigh isn’t so bad, I can handle this anaphylaxis stuff.
In the 3 minutes it took me to read the article about Natalie’s death, my deep and repressed fear of dying from anaphylaxis came flooding back. I wanted to cry, I wanted to hide. Mostly I wanted to go to bed and never eat or drink again. My safety net, my literal life saver, my epinephrine, was clearly just not enough sometimes.
I did not have a panic attack like the good ol’ days though, I talked myself through my different feelings about this new knowledge. Before yesterday, I honestly had no idea that you could receive that much epinephrine and still die from anaphylactic shock. I’ve never heard of it before. I reminded myself that while I have experienced years and years of anaphylaxis, I’ve never even been intubated before. There has always been enough time and enough medicine to save me. I’ve even been without EpiPen before, having to drive to the hospital while having an allergic reaction, and I’ve made it just fine. I will continue to make it just fine. I have been repeating those words in my head like a mantra for the past 24 hours. Nothing has changed since reading that article, the extreme precautions I take every day to not experience anaphylaxis are working, as it has been over three years since I’ve had a reaction.
What broke my heart more than anything about Natalie’s story were her last words. “I’m sorry”, she said to her mother who was watching her die. It broke my heart because I know that feeling, I know how it feels to have your airways closing while your loved ones watch. It’s the worst feeling in the world. In those moments, as scary as they are, I feel bad for my loved ones and can hardly stand to see the fear in their eyes.
Many times I have woken up from an epinephrine/benadryl/steroids cocktail induced sleep in the emergency room to see my loved ones silently weeping by my bedside and it’s always the same words that run through my head, “I’m sorry.”
I’m not sorry that I have allergies, there is obviously nothing I can do about that, I’m just sorry that they have to suffer too, from the outside. If there is anything scarier than dying, I can only imagine it’s watching your wife, daughter, friend, or sister dying and not being able to do a damn thing.
I will continue to resist the urge to type into Google ten-thousand variations of the sentence “what are the chances of dying from anaphylaxis after EpiPen?” and just keep doing what I’ve been doing: living each day to the fullest and not focusing on how my chances of dying may be slightly higher than my peers. After all, whose really to say that they are? We all have different fates, maybe my allergies and the struggles I deal with in this earthly life have absolutely nothing to do with how I am going to die someday. In fact, I’m almost sure of it.
My heart goes out to the Giorgi family tonight who lost a beautiful daughter and sister. Who knows why these things occur, why sometimes being fully prepared just isn’t enough? If nothing else, it is a reminder to squeeze your loved ones and make every moment count.