EXERCISE INDUCED ANAPHYLAXIS and the ER – PART 2

I finished my run and quickly walked through the door. I was staying at my in-law’s shore house, and I entered into a room filled with my brother-in-law, uncle-in-law, and another friend.

“YOU GUYS. I’m having my allergy,” I gasped, as I bounded into the house, ripping off my running shirt, scratching profusely at the hives rapidly forming on my stomach and shoulders.

Not knowing the extent of my condition, no one really said anything. They didn’t think it was anything to worry about.

I mentioned in PART ONE that these attacks happen from time to time, and they’re not life-threatening—normally just a little scratchy…a little puffy. But this time was different. My eyes had started getting itchy DURING the run, and as soon as I stopped running, my tongue was swollen too. I knew it was going to be bad.

Within minutes of returning, I went from looking like this:

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To this:

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And probably most disconcerting to me was my voice. My throat was so swollen that I had gone from having a normal-sounding voice…to almost no voice at all in a matter of minutes. In the past, my voice had always been intact.

It was pretty apparent that I needed to get to the ER immediately, so I scrambled to find a clean shirt and/or sports bra, so that I wouldn’t get a chill from my post-run sweat. My brother-in-law spent what felt like HOURS to figure out directions (“DAVID, I HAVE AN IPHONE. WE DON’T NEED TO LOOK UP DIRECTIONS. LETS GO. NOW.”) and within 10-15 minutes of me returning from my run, we and I were off to Yale’s Emergency Room.

I couldn’t see much, since my condition had worsened to this:

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…Quickly followed by this:

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I obviously tried to find humor in the situation by keeping a record of my swelling via photographic evidence, trumped with the grand finale photo that we’ve all grown to know and love:

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I also took the opportunity in the car to call out sick from work (it was approximately 1:30 and I was due to be in at 3pm…) 

**

Luckily, my distorted face stuck out like a sore thumb in the ER, and we only waited in the chaotic triage line for a few minutes before getting ushered in.

“So you said you’re allergic to exercise, Mary??”

“Yes.”

“And this has happened before??”

“Yes. Twice.”

“And what did the doctors do to you when it happened before?”

“Just epinephrine and Benadryl. Then steroids afterward.”

With that, it was a quick (albeit painful) shot to the arm of epinephrine, followed by a second dose to the thigh after 10 minutes.

In the past, I’ve normally felt the epi working as soon as I receive the shot: it’s a relieving feeling, as though the pressure in my eyes and throat diffuses, and the swelling weans off, if only just a little bit. This time was different, though. This time, I didn’t feel any difference after two shots.

Regardless—I could still breathe, and because I was in good spirits, I joked with the doctors about being allergic to exercise (“Gee, I wish I was allergic to exercise too! Har har har!”) So after deeming me stable, they left me alone with my nurse and told me they’d be returning in 15 minutes.

From the outside, things seemed like they were getting back to normal, and my nurse was directed to give me Benedryl through my IV. But as she pushed the drug into my vein, I suddenly felt a wave of peace and dizziness, and I knew I was going to pass out.

I woke up to what seemed like 20 doctors/nurses/residents/attendings above me, running around. My eyes were swollen as ever, and I could barely breathe. I remember thinking it would be so much easier to just fall asleep…that breathing was just too hard. I felt an out-of-body experience, where I allowed myself to be a limp noodle on the table while people continuously poked and prodded at me. The doctors kept telling me to say my name and age as loud as I could; but I could tell they were dissatisfied because I was as hoarse as ever, and could barely speak.

I felt as though I was getting hooked up to every machine imaginable, and everyone in the room was just…waiting…for me to turn around. 

Or not.

“Mary, have you ever gotten a tube down your throat before?”

I shook my head no, and waited for the impending pain of having a ginormous tube stuck down my throat. To be honest, I didn’t really care what happened, I just wanted to be back to normal.

I could tell something was wrong because I kept hearing one of my doctors pacing in the hallway outside my room, yelling on the phone. He was arguing with somebody about what to do with me. I heard the words “intubation” “central line” and “more epinephrine.”

The resident in the room who had been assigned to me (not one of the 20 randos lined up, spectating) grabbed my arm and whispered, “Mary, I’m not sure you can hear me, but I just wanted to let you know that you are in the best hands there are. These are some amazing doctors. You are going to be okay, just hang in there. You’re going to be fine.”

Uh, what??? Thanks buddy.

Next thing I knew, my doctor got off his phone and returned to my side. He announced I was going to get more epinephrine through a direct shot into my IV line. He explained that I might feel my heart race, but that everything was going to be okay.

“Game on,” I thought. “I’ve done hard workouts before. I know what it feels to have my heart racing.”

How wrong I was…
…I believe my words were, “HOLY FUCK.” 

Receiving the direct push of epinephrine into my bloodstream was unlike anything I’ve ever experienced before. In short: I felt like I was dying. I started shuddering and whimpering like a baby, and my chest felt as though it was going to explode. I felt a pang of pressure in my head, and I thought I was going to violently vomit EVERYWHERE. I squeaked out the words, “I’m gonna puke,” and there was a mad dash for a bed pan as I heaved my entire soul into it.

After about 30 seconds, my body relaxed, and I, once again, lied like a limp noodle on the table. While one of my doctors stayed close by, the other one went outside on the phone, arguing yet again about intubation.

“Her meds are gonna wear off in 10-minutes, and I want the drip and tube to be ready when they do.”

I definitely couldn’t breathe perfectly, but I could tell that my condition wasn’t deteriorating anymore. I knew that the worst was over, and I thought I was ready to go home. The biggest concern on my mind was whether or not my face would be deflated enough to make it into work the next day.

Well. Spoiler alert: returning to work the next day was out of the question.

“Mary, we’re going to take you to the ICU to stay overnight, okay?”

Wait. What? Overnight? Intensive Care Unit???? Isn’t that for, like, people who almost die?? Clearly this must be overkill. Not okay.

Fast forward a few hours, and I found myself looking like this, chilling in the ICU:

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I still felt like I had a lump in my throat, but at least I was starting to feel normal again.

**

Turns out anaphylactic shock can relapse up to 10 hours after the initial attack, and be even more severe than the first onset. Because my reaction was so serious, they were afraid I was going to turn into a pumpkin blow up like a balloon again at midnight, and they wanted to monitor me closely, in case it happened. Needless to say, I spent my Friday night hooked up to machines, getting pumped full of Benadryl and steroids.

Luckily, my system had calmed down, and I did not have another blowup that evening. I was admitted to the regular hospital floor the next afternoon, and finally discharged early Sunday morning.

I later learned that the ICU doctors disagreed with the treatment I was given in the ER. The arguing I heard on the phone?—that was with the ICU, who was telling the ER to stick a tube down my throat immediately, in case they wouldn’t get the chance to do so later. The only reason the doctors didn’t intubate me as soon as I got up to the ICU was because I had told them that my breathing had improved, not worsened…so they decided to wait it out.

Physically: I was back to normal by Monday morning. I had dropped about 8 lbs, but I was mostly de-puffed.

Mentally: I’m still getting over it. I’ve found myself constantly running through the “what ifs,” and trying to piece together what happened. The biggest challenge I’ve faced is seeking closure, and not being able to express my gratitude to all the people who helped me that day. My allergist told me one of the names of the ER doctors who worked on me, and I sent him a thank you email a few days after leaving the hospital. He responded back the next day, which really helped ease my mind much more than I could have imagined. 

Running: My first run back was a fartlek on Monday afternoon, the day after being discharged. I was terrified. I was weak; I was still gaining strength from the weight I had lost in the hospital. The hospital allergists told me to shelf the running for 4-6 months. Obviously, there was never any part of me that was going to follow through with that…but still. Getting out on the road again was scary. What if it happened again??

Well. It didn’t. I’m fine. I am stronger. I am an athlete. I am a runner. Each day since then has been better and better. Each run since then has been PHENOMINAL. I am on fire now. I am more motivated than ever, and I’ve been genuinely enjoying every run I set out on. 

Of course, on long run days, I set out looking like this, with my hip epi pen around my waist:

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(And that pink wrist band, above my Garmin? It’s a RoadID. With emergency contact info. Duh.)

But if a sassy black ninja belt and a RoadID is all it takes to get out for more miles…I’ll take it any day.

Exercise Induced Anaphylaxis and the ER – PART 1

“So you said you’re allergic to exercise, Mary??”
“Yes.”
“And this has happened before??”
“Yes. Twice.”
“And what did the doctors do to you when it happened before?”
“Just epinephrine and Benadryl. Then steroids afterward.”
“Did they admit you overnight?”
“Nope.”

Mind you—this conversation is happening as my face is looking like this:

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The run leading up to my third anaphylactic attack was nothing more than ordinary. It had been 3-4 days since I had gotten on the road, and when I woke up Friday morning, I was ready to go. Prior to the run, I had been struggling with a sinus infection…then life got in the way of running, and I hadn’t taken so many days off since May’s marathon. FML. 

I set off on an out-and-back run, anticipating doing only 40-50 minutes. Even though the weather was perfect—mid-70s and cool—nothing about the run felt good. I was tired and I felt sluggish; I could tell I was coming back from being sick.

In my mind, I thought, “Ok, just get through this. First run back, then training for your next half starts next week and things’ll be up from there.” 

When I’m not training, I don’t wear my Garmin, so I have no idea what my pace was during the run; only that it felt slow. At the turnaround point, I decided to do 50 minutes as opposed to 40 (small victories) and it wasn’t until 45 minutes that things started feeling funny.

“Crap,” I thought. “It’s happening. I’m blowing up.” I was close to home, so the only thing I could do at that point was turn on a really energetic pump-up song (Nicki Minaj, duh), run home as fast as I could, and get to the hospital ASAP.

Allow me to backtrack. I have a condition called Exercised Induced Anaphylaxis, or EIA. I was diagnosed with EIA at the age of 18, after returning from an easy 60-minute run and experiencing anaphylactic shock where my face blew up like a balloon and my throat started closing up. You know how some kids are allergic to peanuts and bee stings and they need to carry Epi pens and benedryl to quell their allergic attack? Yeah. I have that; only it’s caused by exercise.

Most cases of EIA are caused by exercise AND something else, whether it’s food, temperature, or a drug. (For example, one of my allergists once told me about a patient who only experienced anaphylactic attacks when he ate McDonalds prior to exercise.) The problem with my strain of EIA is that there has been zero conclusive evidence of what triggers my attacks besides exercise itself. Yes, ladies and gentlemen…I have the most rare type of EIA. It’s an honor and a privilege, really.

“Wait. So you’re allergic to exercise, yet you still do it?” 

Well. Yes.

I apologize in advance for sounding arrogant; however, I’ve found that the only people who understand my rationale are athletes, like myself. As athletes, we work out HUNDREDS-even thousands-of times…everyday…sometimes, twice a day. We have goals. We have dreams. We love being healthy and we strive for that adrenaline rush during a race or a competition. We’ve met best friends through training, and I’ve never heard anyone bitch about finishing a workout.

On a personal level: I am a runner. I have successfully completed 3 marathons, qualified for the Boston Marathon, run a handful more half marathons, won a local 5k once, and even placed third in my age group during a sprint triathlon several years back. I was a Division 1 rower in college, and had dreams of going sub-elite in my post-collegiate career.

My allergy has been something I have lived with since 2005 with only a little limitation. I’ll be damned if I stop achieving my athletic goals now.

Since ‘05, I have been to the ER three times because of full-blown anaphylactic shock. The last time was in 2009, when I looked like this:image

I will reluctantly admit that my attacks have been getting worse each time; however, I am confident that as long as I’m careful, I can still pursue my active lifestyle. In between the ER visits, I occasionally develop hives or moderate facial swelling after a tough workout: 
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-But these flare-ups can be resolved with some Benadryl and rest.

Unfortunately, I needed more than just Benedryl and rest last Friday when I went to the ER. But you know what? I made it. I’m okay. And I’ve had some kick-ass runs since then to prove that something like this won’t get me down for long. 

*Stay tuned for PART 2*