February 2024 – Witness Marks

What Happened In June

Over the next several weeks, I returned to the emergency department multiple times, each visit marked by being stuck in a slow ventricular tachycardia rhythm. Each time, the team adjusted my ICD/pacemaker settings to pace me out of the arrhythmia—lowering the threshold again and again—until it finally settled at 111 beats per minute. That meant any heart rate above 111 bpm would trigger therapeutic pacing.

As a result, my activity had to be extremely limited until the issue could be resolved—either through healing, additional ablations, or transplant.

On June 14, 2022, we had completed all of the pre-transplant evaluation testing and received insurance approval. The only thing left was officially being listed. I messaged Sarah, my transplant coordinator at the time, asking if there was any update. Within hours, she called to tell me I was officially listed for transplant.

It was a surreal moment. At first, I felt a flicker of excitement—we were one step closer to closing this chapter, I thought. But that feeling was quickly eclipsed by fear. How does one prepare for something like a heart transplant? Death is woven into the equation—the death of the donor, and the possibility of one’s own.

We decided to put it out of our minds for the day and drove down to Utah County to enjoy the Utah Valley Parade of Homes. But before we even made it into our first house, my phone rang again. It was Sarah.

“Fiauna, are you ready to come into the hospital? We can have a room ready for you by the end of the day.”

I wasn’t expecting that call—not at all—and I wasn’t sure what it meant or how to respond. I didn’t want to go back into the hospital, especially not for an indeterminate stay while waiting for a donor heart. And yet, if this was part of the process, I didn’t want to risk missing my perfect match. I told her yes and listened as she explained the next steps. I had a few hours to prepare while they readied a room. Once it was available, admitting would call and tell me to come in.

We toured a few homes before heading back to pack and wait. I called some family members to let them know, expecting to feel something—excitement, urgency, clarity. Instead, something felt off. With every phone call, my confidence wavered. I began to second-guess everything.

Around 5:30 that evening, the call finally came. We finished dinner and quietly, nervously drove up to the hospital. I had a pit in my stomach the entire way. I couldn’t quite articulate it, but something felt deeply wrong.

What followed over the next five days was one of the most emotionally wrenching experiences of my life. I wish I could say something transformative happened during that stay, but it didn’t—at least not immediately. The lessons would take another eighteen months to fully surface and take shape.

That first night, Aaron and I sat in my hospital room—fully expecting to stay there until transplant—and called another transplant recipient, someone who had already walked this road and could offer advice. She was kind, generous, and informative. Still, when the call ended, I felt even less certain. Maybe I didn’t need a transplant. Maybe the doctors were wrong. I went to sleep confused and deeply conflicted.

The next morning, a group from the heart failure and electrophysiology teams came into my room and asked me bluntly, “Why are you here?”

I was stunned. What did they mean? I had been told to come—by them.

I was then informed that there was no chance I would receive a transplant at that point. The electrophysiology team suggested trying different medications before moving forward with transplant. Then they left the room without a clear plan, leaving me to question everything.

Later that day, while Aaron stepped out to get some work done, the discharge planner came in and asked—again—why I was there and when I hoped to go home.

“I’m here for a heart transplant,” I said, increasingly confused. “I didn’t expect to go home until after that.”

She responded, “I don’t even think we do heart transplants anymore—not since COVID. We don’t get many viable donor hearts, and the hospital across town has an entire floor full of people waiting.”

When she left, I fell apart.

Aaron returned to find me inconsolable—crying, angry, and ashamed. I couldn’t understand why this was happening. I had followed instructions. I had shown up when told. And yet I felt as though I’d done something wrong, though I had no idea what—or how to fix it. That night, the sun seemed to set on my spirit. I felt confused, betrayed, and unsure of whom to trust. Aaron and I prayed for peace and guidance.

The next morning, the doctors returned—this time separately. Dr. Shah from the heart failure team sat with us and explained clearly that the likelihood of transplant happening anytime soon was slim. He recommended that I go home as Status 6, acknowledging that transplant at that status is rare. We appreciated his honesty.

Later, the electrophysiology team presented a new medication option—one that might control the VT with fewer side effects. The drugs were high-risk, but the hope was that they could stabilize me long enough for a suitable heart to become available. Again, we appreciated the clarity. After careful consideration, we agreed to the plan.

I would remain hospitalized for the rest of the week so they could monitor me for dangerous side effects. If all went well, I would go home to wait for transplant as Status 6.

For the next three days, I stayed on telemetry and had an EKG every twelve hours. My heart tolerated the new medication regimen well. I wish I could say I felt better on it. I told the doctors that I did—partly because I was still wrestling with anger, regret, and an unexpected sense of shame—but physically, I didn’t feel much different.

What I did feel was peace.

This was the right course of action. I would wait at home with my family for the perfect heart to become available—no matter how long it took.

When the Path Became Clear

The journey toward a heart transplant began long before I realized what was happening.

I had started seeing a new heart failure specialist at the University of Utah, and he began ordering a series of specific tests. The first was an overnight pulse oximetry test. He explained that it would help determine whether my fatigue was caused by heart failure or possibly sleep apnea. I later learned that this test is just one of many routinely used in a transplant evaluation.

At one of my appointments, Aaron asked the doctor how often people with ARVC eventually need a heart transplant. I didn’t understand why he would even ask such a question. I wasn’t going to need a heart transplant—certainly not. I was relatively young. I was otherwise healthy. Right?

The doctor explained that the determining factor would be whether my arrhythmias could be controlled. If they couldn’t, transplant would become the necessary option. He then ordered a VO₂ max test and scheduled a follow-up appointment later that month.

Shortly after that follow-up, my heart “declared itself.”

I began experiencing difficult-to-control ventricular tachycardia. After one episode that lasted more than an hour, Aaron took me to the nearest emergency room. The ER physician quickly performed a cardioversion, but unlike the first time, my heart continued slipping back into VT. He called my doctor at the University of Utah, who requested I be transferred there for observation.

That night, I was transported by ambulance up to the U, where I would remain for 12 days—moving in and out of the ICU.

The next morning, I woke up in the cardiovascular medical unit. My doctor came into my room and said, “Remember when we talked about this in clinic? You’re having multiple episodes of VT. That means it’s time to talk about transplant.”

It was Saturday morning. He told me the earliest I might go home was the following Tuesday. But later that same morning, I went back into VT and had to be transferred to the ICU. There, the VT continued—coming and going despite being on multiple IV anti-arrhythmic medications.

That’s when I was told, plainly, that a heart transplant was the best option. With my consent, the team would use my inpatient stay to complete the full transplant evaluation. I would also undergo an epicardial ablation in hopes of locating and treating the source of the VT.

At my hospital—though I understand this can vary by transplant center—the transplant evaluation included:

Extensive blood work (more than 20 vials drawn in one sitting—torture)
Cardiac catheterization to evaluate coronary arteries, pressures, and overall heart health
Echocardiogram (ultrasound of the heart)
Stress echocardiogram
VO₂ max test
Chest X-ray
Pulmonary function testing
Abdominal ultrasound
Ankle-brachial index test to assess blood flow in the arms and legs
And one particularly strange test involving a large plastic bubble placed over my head to measure gas exchange while breathing

It was a whirlwind week in the ICU. Because the University of Utah is a teaching hospital, there was a constant stream of doctors, residents, fellows, nurses, student nurses, and pharmacists in and out of my room—a room with no bathroom.

There was no privacy. Every time I had to use the bedside commode, I found myself breaking down in tears. It was humiliating and overwhelming, and something I hope and pray I never have to experience again—though I know I will, post-transplant.

After eight days in the ICU, I was transferred back to the cardiovascular medical unit. The epicardial ablation was considered successful. The VT was controlled—at least for the moment. However, the procedure allowed my doctor to see just how severely scarred and damaged my right ventricle truly was. He told us that, given what he saw, heart transplant was the logical next step.

After a few more days in the CVMU—and twelve days total in the hospital—I was finally discharged.

But this was not the end.

I would be back.

The Months That Followed

Following news of my diagnosis, and after my first visit with a heart failure specialist, our next stop was back at the hospital to have an implantable cardioverter-defibrillator (ICD) placed. We returned to the same same-day surgery unit where I had undergone my ablation and, to our delight, were assigned the same nurse. Clo was absolutely wonderful, making sure we were comfortable and genuinely cared for.

That day, I received a single-lead ICD pacemaker and was sent home within hours, hoping and praying I would never need the device.

Two weeks later, I found myself back in the hospital with chest pain. I assumed it was my gallbladder, but testing revealed nothing. The pain was then presumed to be cardiac in nature, so I was admitted overnight for observation. A good dose of Toradol finally eased the pain, and I was discharged the next day without answers.

The only thing that incident clarified was that we needed new doctors. During my entire 24-hour hospital stay, neither of my cardiologists could be reached. A follow-up visit with my heart failure specialist confirmed that he hadn’t even been informed of my admission—despite Aaron having called his nurse to notify them. Shortly after, we received a referral to Dr. Bunch at the University of Utah.

Our first consultation with him took place over the phone. He had already reviewed my chart and immediately prescribed several medications—something my previous doctors had not done. From the start, we felt reassured that we were finally in capable hands.

Things went smoothly for a few months, until March 16. I was sitting at Keelie’s basketball game when I experienced a sudden wake-up call. I glanced at my watch and saw my heart rate was 152.

152?

I was just sitting on a bench watching the game. I wasn’t emotional or excited—and I didn’t feel anything unusual at all. Discreetly, I got up and went to the restroom to run an ECG on my watch. I recognized the tracing immediately: ventricular tachycardia.

I was shaken, scared, and confused. How was this happening? And why?

Once I got home, I sent a PDF of the tracing to Dr. Bunch’s office. A physician assistant called me back, advised me to increase my anti-arrhythmic medication (flecainide), and asked me to send a transmission from my ICD.

Normally, the ICD records VT episodes and automatically sends that data to the doctor’s office. I sent the transmission, but the PA told me she didn’t see any recorded events. While I was relieved I hadn’t received a shock that day, I was deeply confused. I knew I’d had several minutes of VT—and that is not insignificant.

They decided I should wear a heart monitor for 30 days.

I wore the monitor until mid-April, anxiously awaiting the results. But before my doctor could review the findings with me, my heart decided to escalate matters.

On April 29, after seven days of intermittent VT—culminating in an episode lasting several hours at a rate of 140–160 beats per minute—Aaron took me to the emergency room for cardioversion. What we thought would be a quick ER visit turned into a 12-day hospital stay, most of it spent in the ICU.

The Day My Heart Broke (part 2)

I woke from sedation still in the same trauma room in the emergency department. Aaron sat in a chair not far from my gurney, looking tired—and maybe a little sad. He was still holding my coat, shirt, and shoes.

As I came to, I apparently laughed and said something about dreaming of Halloween. I never believed those stories about people acting completely off their rocker while coming out of sedation. I guess I do now.

The doctors released me that day, but not before issuing firm warnings: don’t do anything exciting, don’t drink caffeine, and find an electrophysiologist as soon as possible. And not before I overheard a nurse remark that she hadn’t seen someone with a ventricular tachycardia heart rate that high who was still conscious, alert, and talking—and wondering aloud whether I should really be going home.

We left and tried not to think about what lay ahead. That proved impossible. We googled. We searched the internet and social media. We found a lot of information. I remember reading countless stories—many on Instagram—about people going into VT for various reasons, including arrhythmogenic cardiomyopathy (ARVC or ACM), along with other cardiomyopathies. I initially dismissed ARVC because everything I read described it as genetic, and I couldn’t think of anyone in my family who had died from an unexplained heart condition.

Still, something gnawed at the back of my mind.

Through a friend and client of Aaron’s, we found ourselves back in the office of Dr. Crandall, who had treated me for tachycardia years earlier. He ordered an echocardiogram, which he told us looked completely normal. Even so, he recommended another endocardial ablation and electrophysiological mapping to determine where the abnormal rhythm was originating. His office scheduled the procedure for two weeks later.

The day before the procedure, I logged into my chart to check the results of my required COVID test and noticed the echocardiogram report was available. I didn’t waste any time reading it. Much of it was incomprehensible to me—measurements, numbers, terminology I didn’t understand—so I skipped ahead to the section labeled Impressions. That’s where I read the words: moderately to severely enlarged right ventricle.

Well, that can’t be good, I thought.

That night, I showed the report to Aaron. Neither of us could understand why we had been told my heart looked completely normal if the report clearly stated my right ventricle was enlarged. Later, I would be told it was likely because I was an athlete—apparently endurance athletes often have enlarged right ventricles. (For the record, I am not an athlete.) The next morning, before I was wheeled into the cath lab, we asked the doctor about the enlarged right ventricle.

“Hmmm. I’ll take a look at that,” was his reply.

The cath lab is a cold, mechanical room—one I can only describe as masculine in nature. Large X-ray machines loom overhead. Monitors and screens line the walls. There’s a glass viewing wall and a narrow table for the patient to lie on. As I was prepped for the procedure—which included a very…intimate shave—I felt deeply alone and scared. I realized I was the only woman in the room. The lab that day was staffed entirely by men.

With the exception of one technician who spoke kindly to me, the staff talked about me as if I couldn’t hear them. They speculated about my possible diagnosis and downplayed my symptoms. I remember thinking that this flippant dismissal was exactly why I was there in the first place. If the doctors I’d seen over the years had listened when I described my racing heart—rather than telling me I was fine, not to worry, or to “just take more magnesium”—maybe I could have avoided this entirely.

I’ll spare you most of the details of an endocardial ablation. Suffice it to say, they puncture veins or arteries in your groin and thread wires up through your body—past your pelvis, through your torso, and into your heart. It’s wild, really.

After the procedure, I woke in outpatient recovery, lying flat on my back with an extremely full bladder. They flood you with fluids to help regulate your body temperature while they burn tissue inside your heart. It was incredibly uncomfortable. My nurse, though, was wonderful. She helped both Aaron and me feel calm and showed genuine care for us.

While I was under sedation, Dr. Crandall explained to Aaron that although the procedure itself was successful, they had observed some concerning findings. Based on my heart rate, the origin of the abnormal rhythm, and the condition of my right ventricle, he suspected I might have ARVC. He recommended a cardiac MRI within the week.

Three days later, I endured the torture that is a cardiac MRI. The technician told me it was the longest MRI they perform. She wasn’t kidding. I lay on my back in the tube, holding my breath on command, for nearly an hour. When it was over, she looked at me with sympathetic eyes and asked what the doctor was looking for. I explained that he suspected a form of cardiomyopathy. She nodded and mentioned that the walls of my heart were “quite motiony”—whatever that meant.

I’ve had MRIs before. I’ve had family members wait weeks for results. I fully expected a long delay. I was not prepared for the phone call the very next day.

“The results of your MRI are in,” the doctor said. “It does appear that you have arrhythmogenic right ventricular cardiomyopathy. I’m referring you to a physician in the heart failure clinic—his office will call to schedule. It’s genetic, so you’ll need genetic counseling, and all of your children will need to be tested.”

With that, the world as I knew it—the life I had built and the future I had imagined—vanished.

The Day My Heart Broke

I can’t believe I’m here, in front of my trusty Mac, again—writing a blog post, something I haven’t done in a decade. I’m rusty. My fingers feel tethered by cobwebs. But I feel like this story needs to be shared.

October 23, 2021, was supposed to be a busy day for our family. We were visiting Cache Valley for the weekend with plans to clean our property (we own a home in northern Cache County that we planned on renting to a young couple of newlyweds attending Utah State University), do some shopping, and attend a Halloween party that evening.

It was a cold, rainy morning, so Aaron and I decided to work out indoors instead of running the hills of High Creek Canyon. Aaron took the treadmill, and I picked up my jump rope to get in a quick cardio session.

I love jumping rope. I’m not particularly good at it, but when you get into a rhythm with the rope—oh man—it feels good. I turned on some upbeat music and began skipping. I have to have music when I jump rope; it’s a must. But that morning, Aaron wanted to watch something—a documentary about WWII, I think. I couldn’t hear my music, and in frustration, I grabbed my rope and phone and headed to the front porch.

Our Cache Valley home has the most enviable front porch. It’s six feet deep and wraps around the front of the old farmhouse, with views down the canyon and out into the valley. I love sitting on the porch watching the cows in the pasture just below the house. Not too long ago, I discovered the joy of working out there. It’s relatively private and offers fresh air and a view to distract from any boredom or monotony.

That day, however, was cold—something I don’t think my body appreciated much. I was working up a sweat (I am a very proficient sweater, if I do say so myself), and the cold air felt biting. Still, my rhythm was good, the music on my playlist was spot on, so I pushed on.

About 20 minutes into my workout, I noticed my heart rate jump. I was used to that. Twenty-five years earlier, I had been diagnosed with supraventricular tachycardia (SVT), an arrhythmia that causes an unusually fast heart rate in the upper chambers of the heart. I’d had surgery to correct it—a cardiac ablation—but it was unsuccessful. At the time, my doctor told me not to worry too much, as it was considered a fairly benign arrhythmia.

I stopped jumping rope to see if my heart rate would come down, but instead I became extremely dizzy. I gathered up my rope and phone and retreated into the house. The workout was over.

Inside, I lay on the floor stretching, cooling down, and trying to bring my heart rate under control. I was wearing an Apple Watch, which read a heart rate of 89—not high at all. I was confused, because I could feel my heart beating out of my chest. After about ten minutes, Aaron finished his run, and my heart was still raging. I knew I needed to tell him, though I really didn’t want to. This had happened before, and it had always resolved on its own. There was no need to alarm anyone.

To my dismay and tremendous disappointment, nothing changed. My heart thundered on, and I began to feel nauseous and increasingly dizzy. My son, Brighton, brought me a sports drink, and Aaron brought me a banana, thinking I might be dehydrated or have low blood sugar.

I attempted to shower, clinging to the walls and countertop as I made my way into the bathroom. Stars filled my vision, and my breath felt shallow and weak. In the shower, I raised my arms to wash my hair, only to collapse onto the floor as my vision went dark.

Up to that point, I had felt relatively calm. As I said, this had happened before, and I’d been fine. But now it felt different. Sitting collapsed on the shower floor, the thought crossed my mind: This is how I die.

Aaron came into the bathroom and found me collapsed on the shower floor. He instantly dropped to his knees beside me. Panicked but focused, knowing exactly what he needed to do, Aaron quickly gave me a priesthood blessing before helping me out of the shower. Back in the bedroom, he tenderly helped me dress as I lay on the floor, growing more nauseous with each passing minute.

Despite passing out and feeling so ill, I begged not to go to the hospital. Brighton, in his 22-year-old wisdom, offered to call an ambulance, reminding me that heart issues should be taken seriously—and that the “heartburn” I complained of was actually chest pain.

I’m ashamed now to admit that it took two hours for Aaron and Brighton to convince me to go to the emergency room. When I finally acquiesced, Aaron carried me to the car for the 25-minute drive to Logan Regional Hospital. I tried several times to convince him to turn around, insisting that I felt better. Luckily, Aaron is a smart and deeply concerned man.

He placed me in a wheelchair and guided me into the emergency department lobby. All the while, my watch still read my heart rate as 89 bpm. I could not understand what was happening. My heart was just thundering—that’s the only word that fits.

Within about 30 seconds, a nurse called me back to triage. I removed my top, put on a hospital gown, and crawled onto the bed as she quickly placed several leads on my chest to monitor my heart. I never saw the monitor, but within seconds the small room filled with two doctors, a physician assistant, and additional medical staff, who swiftly wheeled my bed into another room across the emergency department.

One of the doctors looked at me and said, “This isn’t SVT. This is ventricular tachycardia. Your heart is working much harder than we’d like. We’re going to need to perform a cardioversion.”

I understood every word he said. The gravity of the situation was not lost on me. Ventricular tachycardia, or VT, is a very dangerous arrhythmia that can quickly lead to cardiac arrest if not corrected through medication or cardioversion. He explained that they would normally try medication first, but with my heart rate—between 230 and 240 beats per minute—cardioversion was the safer option.

Through tears, I gave my consent.

IVs were placed in both arms. Electrodes were attached across my torso and legs. Oxygen was placed over my face. And before I knew it, I was drifting off as they prepared me for a sedated cardioversion.

To be continued…