What Happened in June

Over the next several weeks I would return to the emergency department several times stuck in a slow ventricular tachycardia rhythm. Each time they would reset my ICD/Pacemaker to pace me out of the tachy arrhythmia at a slower and slower rate, finally settling at 111 beats per minute. That meant I could receive therapeutic pacing at any heart rate higher than 111 bpm. My activity would have to be very limited until this was resolved either through healing, more ablations, or transplant.

 

On June 14^th 2022, we had finished all of the pre-transplant evaluation testing and had been approved by our insurance, all we had left was actually getting listed. I messaged Sarah, my transplant coordinator at the time and asked if there was any news on that front. Within hours, she called me and told me that I was officially listed for transplant. What a surreal feeling. At first, I was a little thrilled—we were one step closer to closing this chapter, I thought. On the other hand, I was absolutely terrified. How does one process and prepare for such a thing as a heart transplant? One must consider death in the equation—the death of the donor as well as the prospect of one’s own.

 

We decided to put it out of our mind for the day and loaded into the car to go enjoy the Utah Valley Parade of Homes. We drove down to Utah County, but before we could make it into our first home for the day, I got another call from Sarah. “Fiauna, are you ready to come into the hospital? We can have a room for you ready by the end of the day.”

 

I wasn’t expecting this call at all and wasn’t sure what it meant or how to respond to it. On the one hand, I really didn’t want to go back into the hospital, certainly not for an indeterminate amount of time to wait for a heart to become available. But on the other hand, if this was the process of receiving a heart transplant, I certainly didn’t want to miss my perfect match. I responded yes and took in the instructions she gave me. I had a few hours to prepare while they readied a room. Then, once the room was available, I would receive a call from admitting to come in and check in to the hospital to wait. 

 

We toured a few houses in the parade of homes before heading back to our house to ready ourselves and wait for the call. I called some of my family to let them know, expecting things to feel more…exciting? I’m not sure quite how to phrase it, but as I called family members, something felt off. I immediately started second guessing this course of action.

 

Around five thirty that evening the call finally came. We finished dinner and quietly, nervously made our way up to the hospital. There was a pit in my stomach the entire time. Something definitely felt wrong but the words to express it escaped me. What ensued over the next five days was one of the most emotionally wrenching experiences I’ve been through. I wish I could report that some transformative thing happened during this stay in the hospital, but I can’t. While I did learn lessons, the lessons took the next eighteen months to fully solidify and take form for me.

 

That night, Aaron and I sat in my hospital room where we fully expected to stay until transplant and placed a phone call to another transplant recipient, someone who had been down this road and could offer us solid advice. She was wonderful, friendly, and did enlighten us on many points. However, I came away from the call feeling less than sure that this was the right approach. Maybe I didn’t need a transplant. Maybe the doctors had it all wrong. I ended the day very confused and conflicted.

 

The next morning the team of doctors and practitioners from the heart failure team and electrophysiology came into my room and asked me straight out “Why are you here?”

I have never felt so blindsided. What did they mean? I had been told to come in—by them.

I was then told that there was no way I was going to receive a transplant at that point. The electrophysiology team then added that maybe we should try some different medications before moving forward with a transplant. Then they left the room without making any decisions, leaving me to question everything. 

 

Later that day when I was alone because Aaron had to get some work done, the discharge planner for the floor came in and again asked me why I was there and when I was hoping to go home. “I’m here for a heart transplant and I don’t anticipate going home until after that,” I informed her, confused why this wasn’t already known. To my dismay she responded, “I don’t even think we do heart transplants anymore, not since Covid anyway. We just don’t get a lot of good donor hearts anymore and the hospital across town has an entire floor of the hospital full of people waiting for transplants.” 

 

When she left, I was a mess. Aaron arrived back at the hospital to find me inconsolable. I was crying and angry. Why was I there? I had been told to come into the hospital by my team. Why was this happening now? I oddly felt like I had done something wrong, but I didn’t know how to fix it. The sun went down on that day and on my spirit. I was confused, angry, ashamed, and conflicted. Who should I even trust? Aaron and I prayed for peace and guidance.

 

The next morning, the doctors returned, this time separated into teams—heart failure and electrophysiology separately. Dr. Shah from heart failure sat with us in my room and explained to us that the likelihood of transplant happening any time soon was slim, that I really should go home as a status six, but that transplant at status six was extremely rare. We appreciated his candor and clarity. When electrophysiology came in the presented a new option for medications that might just keep the VT at bay with fewer side effects. Granted, the drugs were high-risk drugs, but hopefully a good heart would come sooner than later and we could move forward. Again, we appreciated the clarity. We considered the information before ultimately agreeing with the plan. I would remain in the hospital for the rest of the week to watch for any dangerous side effects caused by the new medications before being sent home to wait for transplant as a status six.

For the next three days, I stayed on telemetry and had an EKG every twelve hours to check for any dangerous arrhythmias. My little heart did well on the new medication regimen. I wish I could say that I felt better on these new drugs (I told the doctors I did because I was still struggling with my feelings of anger, regret, and oddly, shame) but I really didn't. But I did feel at peace that this was the right course of action. I would wait at home with my family for the perfect heart to become available now matter how long it took. 

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