My pediatric cardiologist was extremely concerned about me by the time I was thirteen. He stayed in close contact with Dr. Kaye, my adolescent medicine doctor. When I was lying down on that crinkly white paper on the exam table, my heart rate was usually about 120. Sitting up it was usually about 135, and when I stood up, it was in the 150s. Neither Dr. Kaye or Dr. Oster, the cardiologist, ever said anything about those numbers being abnormal, but I read it right off their faces.
After they left the room I looked it up on my phone. A normal heart rate for a teenager is 60 to 100 beats per minute, and it shouldn’t fluctuate like that with changes of position.
Dr. Oster said they wanted to run a bunch of tests on my heart shortly before my fourteenth birthday. I was not surprised.
The EKGs and all the other tests were similar, just showing a fast heart rate that is reacting to low potassium and that increases when I go from sitting to standing.
Over and over Dr. Kaye would order liquid potassium. I would put it through my NJ tube with all of my other meds. My NJ tube was that tube that went in my nose, down my esophagus, past my stomach and into the middle of my small intestine to bypass my paralyzed stomach. I got all of my nutrition and medication through the NJ tube the year I was thirteen, as my gastroparesis (paralyzed stomach) was flaring up badly that year.
The liquid potassium never worked. It would never bring my potassium up high enough. I would find myself once again at the hospital getting an IV of potassium to go straight into my bloodstream for a couple of days until my levels bumped back up and my EKG normalized.
“For some reason, your kidneys don’t hold onto potassium and you don’t absorb it through your GI tract,” explained Dr. Kaye. It was just another unsolved mystery that was me.
Dr. Oster couldn’t explain me either. He had me wear a 24-hour heart monitor one day and 24-hour blood pressure monitor the next, and finally settled on ordering me Metoprolol to drop my heart rate down with strict orders for me to monitor my blood pressure with a monitor to be picked up at the pharmacy.
Patiently, I waited and waited for the medicine to stop the butterflies-on-steroids that were going at it inside my chest where my heart should be, but the metoprolol never calmed the inside of my chest long enough for me to have any relief. Instead, the EKGs worsened. They told me I was going into an abnormal rhythm called Atrial fibrillation where the upper chamber of my heart was just quivering instead of pumping efficiently. They had explained to me that this put me at high risk for dangerous blood clots that could cause strokes and even kill me. Other times I briefly went into other abnormal rhythms like something called atrial flutter where the upper chambers of my heart were beating way too fast or SVT where my pulse would race so rapidly, they had to temporarily stop it and restart it. The worst was when I would go into a rhythm that could be fatal called ventricular tachycardia.
Sometimes I needed to go to the hospital to get cardioverted (have my heart stopped and restarted by either medication or by getting shocked in the chest while sedated). Other times I had to go to get medication and monitoring and blood thinners for the other arrythmias (abnormal heart rhythms). One day when I was seventeen, I had an episode of SVT while I was home alone with my dad.
Because of the rapid beating of my heart, my body wasn’t getting adequate blood flow and I was trembling all over. It was like all of me had somehow turned into melted pudding.
It was only a couple months after I had started the metoprolol and I was having such a fast racing heartbeat that it was causing a pressure almost burning feeling in my chest.
The pressure was getting worse. My heart was beating so ferociously that it was hard to get air in. I mustered up every last bit of everything I had left in me and yelled up the stairs.
“Dad, I don’t feel right! I need you!”
“I’m busy right now, I’ll be down in a little bit.”
The pounding of my chest was staccato. Black was starting to swirl into my consciousness.
“I need you now, I’m really sick. I’m about to pass out. I need you to take me to the hospital,” my voice was weakening, but still audible.
“You’re fine Becca, you…”
The rest of what he said got lost because the black that had been swirling in at the edges had swallowed me whole.
As awareness and my senses were returning to a functional state, I could feel that my heart seemed to now be beating so fast that I couldn’t tell where one beat stopped and the next one began.
I was lying on the floor. I had passed out. My head throbbed. I had whacked it on something.
“Ok, you have my attention now Becca, what do you want?” My dad was standing over me as I lay sprawled out on the floor. My dad tends to want to pass up all my physical concerns as either psychosomatic or made up for attention or me being a hypochondriac.
“I need to go to the hospital. Something’s wrong.”
“Well that’s not going to happen, so what else do you want?” he asked me.
“I need to go to the hospital” I repeated. Panic was nakedly streaking through my head as I desperately tried to dress it and find something useful to do with it.
I was afraid if I just sat there arguing with my dad about whether or not to go to the hospital, I would just keep getting sicker. I knew my dad just thought he didn’t want to cater to “attention-seeking behaviors.” Part of me knew that he loved me deeply, fiercely and unconditionally. He really and truly thought he was doing the right thing and trying to help me “get better” from my “psychological condition” of “faking sick for love”, by handling my medical conditions the way he did, but I just didn’t have time for his misplaced diagnoses.
Instead, I pulled out my phone, dialed 911, and spoke to the dispatcher like I probably should have done earlier.
“I have gastroparesis and heart issues. I’m on metoprolol and am having a really fast heartbeat and breathing problems today.” I told the dispatcher.
Just then my dad wrenched the phone out of my grasp and spoke into the receiver saying that I’m actually a kid and a psychiatric patient and don’t really need to go to the hospital or anything like that.
Before I could get angry at my dad, cry, try to take the phone back, or react in any other way, shape, or form, I got pulled into the black of unconsciousness again.
When I woke up my dad was stroking my forehead and calling my name and apologizing to me over and over again.
“I think you’re having some effects from your eating disorders,” he kept saying. “I should’ve listened to you, the ambulance is on its way right now. Just try to stay still and wait for them to get here. We’ll get through this. You can knock Becca down, but you can’t knock her out,” he smiled at me.
I couldn’t help but smile back.
Ok. So, he was still insisting I had an eating disorder but at least he believed me about having something physically wrong in need of urgent medical attention.
At the hospital the EKG confirmed that I was in that SVT arrhythmia.
“We’re going to need to give you adenosine to get you back to a normal sinus rhythm.” the doctor told me apologetically.
Adenosine stops your speeding heart. Completely stops it from beating at all. This in itself is a terrifying experience. Your heart is then supposed to restart in a normal rhythm.
Before giving Adenosine they hook you up to a crash cart heart monitor. Then they put the defibrillator pads on you just in case your heart doesn’t restart immediately after the Adenosine stops it. As if knowing you’re being prepped for the possibility that your heart might not restart fast enough isn’t bad enough, the medical team also has one of your parents, in this case my dad, sign a paper saying that in the event your heart does not automatically restart they can apply up to 360 joules of electricity to your bare chest in order to jump it. That same paper also says this may or may not be enough to save you.
As if all the above wasn’t bad enough to make the experience horrific, the actual experience of getting the medicine injected into your body is even worse. They have to slam the medicine in your IV at a high-speed rate and instantly you feel like you’ve been tackled by a linebacker. When my heart stopped, I felt all the air in my body whoosh out of me. I felt intense pressure like someone was sitting on my chest squeezing all the air out of me. It was somewhat of a reverse pressure feeling in my lungs and chest.
In reality, I’m sure my heart was only stopped for a split second, but it seemed like I was hung in suspended animation while my chest was in that suffocating reverse pressure feeling. Everyone in the room was just stopped staring at the flat line on the heart monitor. When the blip-blip returned to the heart monitor on the crash cart there was a collective sigh, and then the previously frozen room swung back into motion. As I was switched from the crash-cart monitor to the bedside monitor, I felt the fresh, more refreshing even then ice-tea-on-a-hot-summer-day-feeling in my lungs and chest, as life force flooded back through me again with each pump of my heart that was now beating again in what the medical professionals happily referred to as normal sinus rhythm
While being disconnected from the adenosine and connected to bags of IV fluids intended to rehydrate me and bring up my blood pressure, that was, as usual, a little too low for their taste, I asked one of the nurses for my dad.
“He told me to tell you that he loves you very much, but that hospitals make him too nervous so he went home.” She explained to me.
I tried not to cry. But it didn’t work.