Some Kind of "–itis" (Part 1)
I’m a big fan of my birthday. Every year I try to convince Andy to celebrate my Birthday Month and I’m so persuasive that I’m usually able to negotiate the festivities down to a Birthday Week (at least that’s the version of the story that I’m going to tell). I love eating cake for dinner, seeing friends and family, and taking extra selfish time to do whatever the heck I feel like doing. Birthdays are a time for joy so every time I celebrate another lap around the sun, I soak up as much of that feeling as I can.
My 33rd birthday will go down as one of the most memorable birthdays of my life. Or rather, it will go down as the last time in recent memory that I felt mostly normal. Andy, Cinder, and I woke up early to meet our friend Sarah for some birthday vert on Mount Hood. It was a beautiful day and aside from feeling more tired and out of breath than I would normally expect on an ‘easy’ uphill day, nothing seemed too out of place. That evening, my family came over for dessert, coffee, and PRESENTS!, and we went to bed early (another favorite pastime of mine).
The next morning, after a leisurely and delicious breakfast at a local café and a couple of hours spent curled up with a book on the couch, I dressed up in my winter riding gear, packed some snacks, and headed to the barn. As I was entering the roundabout on 219, I suddenly felt like something was very wrong with my body. I was short of breath, my heart felt like it was trying to leap out of my chest, and my vision was starting to blur. Panicking, I made it to Groner Elementary School, where I pulled off and called Andy.
“Something is really wrong and I’m really scared!” I cried as I flew out of my car, stripping off my jackets to let out some of the body heat that was suddenly building up. I fumbled with the zippers since my hands had started to lose feeling, turning into unresponsive claws with barely any dexterity.
“Call 911!” Andy said. Yeah, I should have done that first but my first instinct when something goes wrong is to call Andy so that’s what I did… I hung up, dialed 911, explained my situation, and waited for EMS to arrive.
First folks on the scene got my rundown through barely held-back tears:
No, I don’t use drugs;
No, I’m not having a panic attack—yes, I know what a panic attack feels like, yes I’m sure;
No, I’ve never felt this before;
No, I haven’t been exercising in the cold;
No, I have no pertinent medical history to share;
On and on and on.
As they applied the blood pressure cuff, my whole left hand went completely numb and I began to cry in earnest.
They couldn't find anything overly wrong with me in the moment so they left the decision of whether to go into the hospital up to me. I debated aloud until one paramedic advised me to go into the hospital — “Trust yourself, you know something is wrong, you should go in.” — then put me into the ambulance. Once I was settled and trying to keep my shaking at bay while they put in an IV, the field ECG readouts were showing that I was bouncing between 40ish and 90bpm on irregular intervals. The very wonderful paramedic whose name I can’t recall now kept printing off those irregularities so he could share them with the OHSU team once we were there. Before we were en route, Andy showed up and chatted with us for a bit, checking out my whacky ECG, before heading home to keep the fur children happy while I figured out what the eff was happening to my body.
Over the course of that 45 minute ambulance ride, my vitals leveled out, and I was back to normal by the time I was unloaded to a hospital bed. To be honest... my ER experience at OHSU was less-than-stellar. I got a chest X-ray, some labs, and a 12L ECG— all of which were pretty darn normal. I felt crazy by that point. Had I just imagined the whole thing?
To top it all off, the ER doc didn’t seem concerned at all, threw out the field ECG printouts, and commented, “I wish my resting heart rate was as low as yours is,” before giving me a 24-hour heart rate monitor that I was to wear for 14 days, and sending me on my merry way.
Andy picked me up, and we went home to grab some food before going back to pick up my car (I was having visions of it getting towed on a school morning which was creating unnecessary stress). I slept relatively well that night and hoped this was a random, isolated incident.
Turns out, it wasn’t. I took it easy the next day but tried to be ‘normal’ like the ER doc had told me so they could get accurate data from the monitor. I drove to the barn, walked around quietly, but overall had an uneventful time. The next couple of days were punctuated by random “symptoms." Shortness of breath, chest tightness, dizziness, and a racing slash fluttering heart whenever I sat down for too long. We started to put it together that sitting was my main trigger. Any time I was in my car or otherwise in a “chair” position,” I became symptomatic. It started off where I could sit for 25-30 minutes (about the time it takes for me to get to the barn), but every day that window seemed to shrink down until it was shorter and shorter. I still tried to be normal, even went for another run that first week, but I felt tired and slow and heavy the entire time and then became horribly symptomatic the following day. I was able to ride a few days and got lots of barn chores done but I felt like something was generally off for the most part.
The first weekend, Andy and I decided we were going to try to go for a couple of easy ski tours (because the ER doc told me to be "normal"). I felt horrific. On Saturday afternoon, I struggled up to about 1,800’ out of the Timberline parking lot before thankfully turning around due to rapidly refreezing snow. Again, mostly I was tired—low energy, and struggling to get a full lungful of air as we kicked and glided up the climber’s trail. That night, sleep was a little rough. I’d started having mild chest pain whenever I'd lay down flat plus some trouble thermoregulating by this point so wearing all of the down jackets I owned was the only way I was staying warm up in the alpine.
The next morning was the morning we got sucked into trying to help some idiot get unstuck from the snow, getting our truck stuck in the process. A couple of hours into trying to help dig us out… I had my second “real” spell of this entire saga. I was suddenly lightheaded, unable to get enough air, and my heart felt like a flopping fish. I won’t go into the details of the stress that Andy was under trying to get us out but I will say that when I said, “I don’t feel well, something is wrong,” he dropped everything to help get me settled in the truck so I could relax for a moment. Only a few minutes later, both of my hands went numb and I started to panic. Andy informed me later that I’d begun hyperventilating. I have no memory of that. What I do remember is that once I started breathing normally again, I was overcome with a sudden urge to empty the contents of my stomach. After helping me from the cab of the truck and making sure I had the TP roll in one hand, I half-staggered behind a tree and took a giant poop while shaking like an autumn leaf. There were many people around… not my finest moment.
Things seemed to kind of improve after this episode resolved—seemingly on its own. I ate some food, drank lots of water, and tried to stay away from all of the digging. Long story short, we ended up needing a tow truck to come drag us out so by 4:00 we were headed back home. 45 minutes into this drive, I was struck by another similar “spell” to the ones that had happened earlier. All the same symptoms, numb hands and racing heart, and tears and all. Andy held my hand while he drove us through Sandy and into Troutdale where we pulled over and I walked around, trying to get my body back in rhythm. Once I had feeling back in my hands and my heart returned to normal, we drove home.
The next day, I received the KardiaMobile 6L in the mail. FINALLY! Something that could help me put words to the things I was feeling whenever I became symptomatic. You see, the 24-hour heart monitor was largely useless to me since none of the data it was intaking was accessible. And, it’s only a single-lead ECG so I didn’t really trust what it was recording, you know?
I made it to the barn a couple of days early that week, had mostly uneventful drives home, and got in for a PT and an acupuncture appt to clear out any concern over a pinched nerve/whatnot that might be causing some of this, and withheld from any cardio exercise aside from some very short and easy walks with Cinder (who was going batshit by this point). I got some atypical readings that week, a few instances of SVEs, PVCs, and some Wide QRS readings, but otherwise, Normal Sinus Rhythm and my general sleepy reading of Bradycardia.
Andy was debating about going on his ice trip to Cody but when I had a couple of ‘good days’ in a row, I pushed him to leave. “No sense in hanging around while nothing happens,” I said, or something along those lines. In fact, the day he left (a Friday), I’d even managed to ride through an entire lesson without incident, including two very normal drives to and from the barn. I was feeling confident in being alone and would just deal with only being able to take Cinder to the park/on easy walks for a couple of weeks.
Because Murphy is a sick SOB, things began deteriorating the next day. I dropped C off at daycare Saturday morning and spent five glorious hours at the barn. Bess and Mia got slathered with attention, I cleaned a bunch of my crap, got supplements mixed, and just enjoyed hanging out with my friends and our horses. As I was wrapping up to leave, however, I started to feel a little funky—slightly shaky and a little short of breath. My Kardia device spat out “Atrial Fibrillation” over and over again for almost an hour. I slowly walked around the barn aisle, sipping water, and trying to get my body calmed back down. After a while, it did, and I set off to drive to the store on my way to pick up Cinder. I made it about 20 minutes before I had to call someone to chat me through the last stretch to Trader Joes. It was either call someone or pull over when these little ‘spells’ happen and sometimes either situation ends up with me walking in slow laps outside of my car trying to get my shit together so I feel safe to drive. It’s worth noting here that, outside of that first incident, I never felt like I was at risk of crashing my car. Whenever I’d start to feel extra-funky, I’d pull over and wait to get my body’s sympathetic response back in check before hitting the road again.
When I got to TJs, I was a bit of a mess and I barely made it around the store. I felt frantic and so, so shaky. I tried calling Andy to let him know that I wasn’t doing so hot but he was in the middle of nowhere Wyoming at that point and wasn’t really reachable. I managed to pick-up a very happy and very tired Cinder, went home, and barely slept.
Sunday morning, I took it very easy and was on the fence about even going to the barn but after having a really calm morning and early afternoon, I jetted over there. It ended up being the first time I’d ever put my dressage saddle on Mia and I was beyond proud of my little mare that evening. She handled the change like a little champ and was very proud of herself after. Which was great because I wouldn’t be out to see her again for almost a week.
As I was driving home Sunday night, I ended up calling 911 again. It had taken me nearly an hour to make a 20 minute drive because I kept having to pull over and walk around my car. It was pouring rain and cold and I was shivering uncontrollably by the time I pulled over for the last time—I’d made it about 2 minutes away from my house. The paramedics arrived and took me in but, as had happened the first time, my vitals had started to level back out the moment I’d gotten up and out of the car. This time I was taken to St Vincent’s ED where I was treated with a bit more concern than what I’d felt in the OHSU ED. However, once again the consequences this whole nightmare was having on my life wasn’t heard or understood. At one point I ended up half-shouting through my tears at the resident, “you don’t understand how this has impacted my life. I don’t sit on the couch all day long doing nothing normally. I went from being able to run 30 miles off the couch two weeks ago to being barely able to walk around the block and hardly able to drive for more than 15 minutes.”
I then pointed out that my resting heart rate was sitting around 90-100bpm. He replied that my vitals looked fine and were within normal range. Here’s where I realized another major issue with our medical system. Most western practitioners don’t understand that “normal” is a relative term. For someone like me, whose resting heart rate is usually in the low 40s, sometimes upper 30s, a heart rate of 100 while sitting in a bed is uncomfortably high. He didn’t have anything to say to me when I brought that up.
I took his silence as an invitation to ask if I was at-risk of having a heart attack or dropping dead or anything. His response? “No, I don’t think you’re going to die but in case something bad happens, it might be a good idea not to be alone.”
I asked what I’m supposed to do the next time this happens. He responded, “don’t call 911 unless you’ve fainted. If you have symptoms for more than an hour, go into Urgent Care.” Super helpful advice.
The team gave me a Rx for potassium before I left (apparently I was slightly low so they were attributing my symptoms to that), and again, sent me on my merry way. So, what did I learn from St V’s ED? I learned that I’m probably not going to die but I probably shouldn’t be alone just in case.
My sis picked me up from the ED, took me to my car, and followed me home where my Mom was entertaining a very wild Cinder and Fitzgerald. They both stuck around for a bit while I tried to eat some dinner and asked if I felt okay being alone or if they should stay with me. I felt okay (exhausted, but okay) at that point so I had them go home. Two hours later, I was shaking on the couch, freezing cold after shivering my way through a shower, unable to calm my overly exhausted body, and was on the phone with my Dad, who came to pick me and Cinder up so we could stay the night with some back-up.
And so began my roulette of having (or being) a house guest.
I didn’t sleep much those next few days. I was in and out of my own house since I couldn’t really be alone, which automatically means I’m not going to sleep well, but I was also having pretty intense chest discomfort every time I laid down. I’d have to get up and walk around slowly, or sit sleeping completely propped up. I couldn’t get a full breath of air in any position except standing so I’d have to fight through panic at feeling low on oxygen in order to get any rest. I did feel more ‘normal’ for a couple of days after taking all of the potassium. I googled the symptoms of hypokalemia and got really excited that maybe this had been the root of all of my problems—slightly low potassium! How great would that be? I was advised to go in for more blood work later in the week to check on if things were improving so I set up and appt with my regular ND, who also ordered a host of other panels, including some for thyroid and ferritin.
Aside from not sleeping well, I was feeling okay until Thursday morning. I shook my way through the final leg of that drive (thanks for chauffeuring me across town, Dad!). I went home, got settled into work and tried to ignore the low-levels of discomfort coursing through my body. I couldn’t ignore them for long though. I was in the middle of a work meeting when I suddenly started to feel my chest tighten and my heart began to thump and flip flop through my chest. I couldn’t breathe so I gasped to my stunned coworkers, “I’m having cardiac distress, I have to go” and then I slammed my laptop shut and walked outside to call my parents.
It was in this moment that I realized that I’d lost complete faith in emergency medicine unless I was severely bleeding. I desperately wanted to call EMS but I also knew that I couldn't call them because they couldn’t help me at all. Despite feeling like I was about to have a heart attack multiple times, they couldn’t even provide me with basic relief. I also knew I couldn’t get myself to Urgent Care because I couldn’t drive. I called my parents as I sobbed on the front porch (I'd go outside when these spells would happen when I was alone so someone would see me if I collapsed...) and asked them to take me in to get some help. I texted Andy to say that I needed him home now—not Sunday, but ASAP. And I kept crying until my parents arrived.
Urgent Care was the first time throughout this process that I felt like someone actually cared about me. I shouted through my tears at the doctor at one point because I was so upset that I needed her to listen to everything I was going through and felt that yelling was the only way to make my point. I then cried even harder when I realized that she was actually going to listen and was concerned about what I was experiencing. She said that the likely reason the ER wasn’t taking me seriously was because I wasn’t having arrhythmia at a high HR and nothing was showing up on the ECGs aside from that first one the day after my birthday; my symptoms were all taking place between 60-100bpm, or the normal heart rate range for the general population. She informed me that I needed to be taking aspirin every day because if I was having afib, I was at an increased risk of stroke (wouldn’t it have been nice if ANYONE in the ER dept had mentioned that to me?), she also prescribed me a beta blocker (metoprolol) to try to keep my heart from over-exerting itself and to keep me calmer, and she called the clinic where I was scheduled to meet with the cardiologist and moved my appt up to Monday. Game changer. 10/10 would visit this Urgent Care again.
I started on the beta blocker the following morning and immediately noted a difference. I was foggy and felt high (and not in a fun way), but I was willing to accept that feeling over the panic that resulted from all of the heart malfunction I’d been unable to manage for two weeks. Andy got home earlier than expected that morning and I felt a sense of deep calm wash over me when he walked in the door. There’s nothing like a little medical crisis to make you appreciate your loved ones, is there? My parents and sister had been incredibly rockstars/irreplaceable amazing beings of light and love keeping me going while he was away and then suddenly, I had my partner in life back as well. Sweet relief!
Andy drove me to the barn the next morning (literally the only thing I cared about doing) and had to basically handhold me throughout the process. I was totally mind-warped on the beta blocker, feeling like I was on the ocean, and was told that seeing me toodle around was like “watching a movie on .75 speed” (funny in hindsight). But I was out at the barn, seeing my girls for the first time in almost a week, and that brought me an immense amount of joy. It was something to hold onto while I waited for answers.