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.
Witness Marks 