family – Page 2 – 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.

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.