life – Page 3 – Witness Marks

The Five Mile Trail

Today I walked five miles.

The sun was shining, and the air held that perfect autumn-day crispness. We had the trail mostly to ourselves—Christine, Millie, and me—and we talked freely, filling the miles with whatever drifted into our minds.

Five miles. What a privilege.

At one point, we passed a neighborhood friend, Megan. She commented on how fast we were—and we were, moving along at a pace of fifteen or sixteen minutes per mile. Without missing a beat, Millie and Christine both said, “Well, Fiauna has a new, young heart. It wants to go fast!”

I have a 21-year-old heart.

That’s a fact that still brings me to tears. My donor was only nineteen years old when her life ended and her heart was donated to extend mine.

After my transplant, while I was still in the hospital, the social worker came to my room during a rare moment of privacy and asked if I wanted to know what little information she was allowed to share about my donor. Surprisingly, I had to think about it.

Did I really want to know?

It seems like such an obvious question, but after everything I had been through, I had to ask myself how much I truly wanted to carry. That information felt sacred somehow. Holding any knowledge at all felt like a responsibility I wasn’t sure I was capable of bearing. It’s hard to explain exactly why. There are good things and hard things that come with knowing. We are all just human, after all, and sometimes the magic you hope and pray for can also break your heart.

While I was waiting for transplant, I heard all the anecdotes about organ transplants and personality changes—believe me. My father-in-law shared, more than once, a story about a man in his church who received a heart from a thirteen-year-old girl and went on to develop her personality traits, right down to an uncontrollable case of the giggles. While I understood there were logical explanations—medications, trauma, the body adjusting—it still colored how I felt in that moment when I was given the chance to learn about my donor.

When the social worker told me my donor was female and between the ages of eighteen and twenty-four, I couldn’t stop the immediate cascade—no, the deluge—of tears. My own children were that same age.

Who was I to take a heart? To take life, opportunity, learning, and growth from someone so young?

I still haven’t found an answer.

Nine months after my transplant, I wrote a letter and sent it to my social worker, hoping it would eventually reach my donor’s family. I didn’t need a response; I simply wanted to say thank you. It felt like the right thing to do.

Then, the following February—ironically, on the very day I learned my thyroid cancer had returned—I received a letter in return. It was from my donor’s mother.

My donor was Ella.

She was a medical assistant and a nursing student. A dancer. A lover of music. She and her mother were very close. Precious.

There’s something that happens when someone comes close to dying—or, in my case, receives a heart transplant. You feel a responsibility to live an extraordinary life, to somehow make the second chance, the gift of an organ, worth it. I’ve wrestled with this more than I care to admit.

I don’t want to go back to college and complete a nursing degree in her honor. I don’t feel healthy enough to run a marathon or climb a famous fourteen-thousand-foot peak. Maybe someday I’ll create a charitable trust or do something meaningful in the realm of organ donation.

But for now—for today—I will walk five miles.

I will breathe in the crisp autumn air and feel the steady rhythm of this 21-year-old heart. And that will be enough.

Mountains to Climb

If I’m being completely honest, I didn’t always like the person I became while I was waiting for a transplant.

In my defense, being told you need a heart transplant is a big deal. It’s not something you can immediately absorb or cope with. I needed every minute of my 18-month wait to begin adjusting. And even then—even now—it’s still a hard thing to wrap my mind around.

In April of 2022, I was sitting in church, pondering the words I was hearing. I don’t know whether it was spoken over the pulpit or whispered by the Spirit, but I distinctly heard this instruction: Ask the Lord what you need to strengthen, and He will tell you.

So that’s exactly what I did. As I sat in sacrament meeting that day, I prayed to know what I could work on—what I needed to improve.

The answer came clearly: patience and long-suffering.

A few short weeks later, those words would become something of a mantra—though often they felt more like a chastisement—as the transplant process truly began.

The transplant team, while hopeful and supportive of organ transplantation, was very clear about one thing: transplant is not a cure. It is, instead, a trade—one disease for another. At the time, I remember thinking, Well, it’s the only chance I’ve got, so let’s get on with it. I caught the enthusiasm quickly and felt anxious to move forward.

But nothing about this process was easy.

The wait ended up being far longer—and far harder—than I had hoped.

Though I thought of myself as a patient person, this trial taught me that the Lord truly knows us better than we know ourselves. Patience was something I deeply needed to develop. And as month after month passed, I felt myself becoming less patient and more self-pitying.

In December of 2022, while casually fixing my hair in the bathroom mirror, I noticed a new lump in my neck. I immediately suspected it was my thyroid. I took a picture and sent it to my sister, asking if she could see it or if I was being overly vigilant. She confirmed that she could definitely see the lump.

I didn’t waste any time trying to schedule an appointment with my primary care doctor—but she couldn’t see me until the end of January. Feeling that this was more urgent, I scheduled with another physician who had availability in early January. Even so, I still waited nearly a month to be seen.

To my dismay, that doctor dismissed my concern almost immediately. He didn’t perform a manual exam—he simply looked and said the lump was small. I explained that one of my medications was known to be toxic to the thyroid.

“Why would you say that?” he responded. “Surely if it were toxic, you wouldn’t be on it.”

I explained that both the prescribing physician and the pharmacist had warned me of its thyroid toxicity and advised frequent monitoring. In the end, I had to ask for labs and a thyroid ultrasound. I never returned to that doctor again.

In early February, I finally had the ultrasound. While my lab results were normal, the ultrasound was not. It revealed three nodules—one of which had concerning features and was classified as TIRADS 5, meaning highly suggestive of malignancy.

That same doctor emailed me the results and suggested I follow up in a year.

Do nothing and follow up in a year? Absolutely not.

When the transplant team learned of the findings, they expedited a referral to endocrinology. In March, I went to the Huntsman Cancer Institute to meet with a specialist. He explained that thyroid cancer is often slow-growing and highly treatable, and that the suspicious nodule was still small. He gave me the option to biopsy it—or not.

I explained that because I was on the transplant list, no transplant would happen if there was even a possibility of active cancer. We needed answers—and we needed them quickly.

Right there in the office, he performed a fine-needle aspiration. Under ultrasound guidance, he inserted a long needle through my neck and into the thyroid nodule, collecting several samples for pathology. All I received for pain was a shot of lidocaine.

Little did I know, this was something I would need to get used to as a heart transplant patient.

A week later, the doctor himself called me.

“I’m so sorry to have to tell you this,” he said, “but it is cancer.”

My transplant listing was immediately put on hold until the cancer could be successfully treated.

I cried—not because I was afraid of dying or even of cancer. Thyroid cancer, after all, is often referred to as “the good kind” because of its low mortality rate. I cried because I was exhausted. Because I was angry. Because this felt like one more blow on top of everything else.

I spiraled into the familiar Why me?

From where I stood, everyone else seemed to be living life on easy mode—vacations, goals, progress. Meanwhile, I was waiting for a heart transplant… and now dealing with cancer.

How was that fair?

And then I was reminded of the words in Ether 2:24:

“For behold, ye shall be as a whale in the midst of the sea; for the mountain waves shall dash upon you. Nevertheless, I will bring you up again out of the depths of the sea…”

Here was another opportunity for God to strengthen me. Another chance for Him to deliver me. Another moment to choose faith in the Savior.

I would get through this. I would climb this mountain too.

After all, you never shout for joy from the peak of a mountain you did not have to climb.

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.