As 2024 began, I commended myself for turning things around and finally focusing on my strength. It had been years since I was able to even consider strength as it related to my health. My days were normally filled with ways to avoid pain, discomfort, or bowel issues. But with the addition of my STIM, and the guidance of a nutritionist I felt ready to explore what exercise and movement would feel like. My selfish motivator of course was looking and feeling my best for our honeymoon, which was finally booked. Italy in September 2024!
That day, I woke up feeling energized. The sun was shining, the coffee was brewing, and I had a laundry list of things I wanted to get done for my new job. It was infusion day and while parts of me always felt a little fearful of how tired the drugs would make me, the hoopla of it all was no more a factor. I go in, I read or do work on my phone, they bandage me up, and I get on with my life. That day was not unlike any other infusion day.
I arrived at the clinic a few minutes before my appointment, settled into my chair, and anticipated the hot pad that would be placed on my arm to prepare for a good vein. The puncture went in pretty easy this time, and I laid back while the saline drip trickled into my vein. The nurse came by to hook up the bag of ‘good stuff’ that would slowly enter my body over the course of 30 minutes. The bright orange sticker on the overpriced small bag of meds was such a normal site for me to see, I had no reason to question whether it was the right drug or a good batch. But ten minutes in I felt an itch on my back that started to spread across my backside like wildfire. Oof, I hesitated to call the nurse over because quite frankly I have this ironic habit of feeling itchy when I know my hands are restricted. But oh no, this itch was intense. One nurse came over to check my back but she said it looked ‘normal red’. The second nurse came rushing over and was shocked by what she saw – welts all over my body. I was in full hives. How one nurse could see it and other couldn’t is beyond me, but I was relying on their eyes to tell me what I could not see. The nurse who confirmed my hives (call her nurse S) ran to the back to get some IV benedryl but it wasn’t kicking in like I had hoped. The itching was now all over my front side and crawling into my throat. I had liquid reactin next, which also didn’t help but the combo effect of these two drugs was making me very sleepy. Within seconds – though it could have been tens of minutes – the following happened:
My throat started closing – and if you know anything about the medical system this is THE trigger to get serious. The first nurse hopped on the phone with the medication care team to confirm they were allowed to give me epinephrine, while nurse S called 911 and spoke to dispatch. During this time I was having a lot of trouble breathing, focusing, staying alert. But the funny thing about losing one sense is that another kicks into high gear. So while I could not physically see a whole lot with my eyes closed, I could hear everything. As the first nurse got confirmation that the epi was approved (and then called my husband), nurse S drew up the epi and administered it through my IV. And just like that – BOOM – my heart exploded!!! A second later (though again, maybe about a minute) the paramedics arrived and took my blood pressure which was (and I cannot tell you what this was exactly) somewhere way higher than my normal. And for the record, my normal is close to 85/55. And from wayyyy above my normal I crashed to 60/40 where I stayed for hours.
The paramedics lifted me on the stretcher and – pay close attention here – asked the nurse if she had another epi pen. She said she did not, but she could draw some up. This is a key point for later. When I got to the truck my husband arrived and they nearly pushed him out of the way as my blood pressure was staying at a critical 60/40. Without knowing the specificity of my blood pressure he warned the medics that my BP is always low and they warned, ‘not this low! We gotta go!’.
I’ll skip past this next part as it was basically an epi dose in the ambulance in my right arm, an epi dose in my other arm when I was in the hospital hallway and then a bag of epi when I was finally in emerg. My BP was shocking everyone and without the details nobody could piece together why the epi wasn’t elevating my BP back to at least my normal. Hours went by, doctors peeked in to ask for urine or answers to questions, and yet no clarity. Slowly, the second bag of epi started to bring me back to life. At this point, nearly half a day later, the emerg nurse asked if we could provide a few vials of blood, mostly just to cross off another list of negative results. But, this time something came back. My troponins – the marker for a heart attack – was in the 1600s. A value that should be sitting close to zero, was way too high, especially for someone 40 years of age. The doctor came back in and asked me again if the sequence of events was correct: saline, biologic, hives, benedryl, reactin, epi IM (intramuscular), paramedics… wait wait wait I said. No! I was given epi in my IV. And just like that, everything became clear.
From that moment onward, all of my notes were changed to Epi IV. Epi IV became the phrase of the week, as doctors, nurses and admin recanted the story over and over again, each one in shock as they said it outloud.
My parents arrived from Toronto (to Ottawa) just as I was sent to the ICU to monitor my heart for a few days, with a few bedside ultrasounds, a few heart scares and a few additions to my medications over those days. We fell into the weekend and they wanted to keep me at least until they were able to send me to the Ottawa Heart Institute as an inpatient for an Angiogram. I’ll also spare anyone reading this the details of an angiogram because they did not go through my groin, they want through my arm, and I nearly barfed at the thought of it all. Anyways, they did see some incidental finding of a narrowing of one of the valves but aside from a literally bruised heart, everything looked fine. An MRI about a month later confirmed this truly was a one-and-done, thank goodness!
The final diagnosis was Type II myocardial stress secondary to epinephrine. The final result was that I was given the correct biologic, with no recalls or complaints from that batch. Needless to say my GI refused to have me try entyvio again so I’m now awaiting my third loading dose of inflectra with no allergic reactions (knock on wood!). But the real aftermath is a grueling three months of PTSD, unwanted phobias, very paranoid parents and husband, and nurse S who indignantly maintains to this day that she gave me the epi in my muscle.
