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.
Witness Marks 