The Journey Begins

 The journey to heart transplant began before I even knew what was happening. I started going to a new heart failure doctor at the University of Utah who began ordering specific tests. He ordered an overnight pulse oximetry test first, explaining that this test would let them know of my fatigue was caused by heart failure or, perhaps, sleep apnea. Later, I found it it's one of the many tests used in a transplant evaluation.

At one of my visits to this doctor Aaron asked how often people with ARVC ended up needing a heart transplant. He told us he had some patients with ARVC waiting for transplants. I didn't understand why Aaron was asking this. I didn't and wouldn't need a heart transplant, for sure. I was relatively young and healthy, right? The doctor then explained that uncontrolled arrhythmias would determine whether I needed a transplant or not. Then he ordered a VO2 max test and scheduled a follow-up visit later in the month.

Just after that follow up appointment my heart "declared itself". I began having difficult-to-control VT. Aaron had taken me to the closest ER following an episode that lasted more than an hour. The ER doctor quickly performed a cardioversion, but, unlike that first time, my heart still kept slipping into VT. He called my doctor at the University of Utah hospital who requested I be transferred there for observation. That night I was taken by medical transport up to the U where I would stay for 12 days, in and out of ICU.

The next morning, I woke up in the cardiovascular medical unit of the hospital. My doctor came into my room and said,"Remember we talked about this in clinic? You're having multiple episodes of VT. That  means it's time to talk about transplant." It was now Saturday morning and he informed me that the earliest I would be going home was the following Tuesday. But later that morning, I went back into V-tach and had to be moved into ICU. There, the VT just kept coming and going despite being on several IV anti-arrhythmics. Then I was told that transplant was the best option for me and that, with my consent, they would take the time I was inpatient to complete testing for the transplant evaluation. I would also have an epicardial ablation to hopefully find and treat the VT.

The transplant evaluation at my hospital (I think it might vary per transplant center) includes:

Blood tests (they took more than 20 vials of blood from me in one sitting. Torture!).

Catheterization where they take a wire into your heart to check the arteries and the pressures and to get an over-all look at the health of your heart.

Echocardiogram--an ultrasound of the heart

Stress Echocardiogram

VO2 Max test

Chest X-ray

Pulmonary Function Test

Abdominal Ultrasound

Ankle-brachial index test--to show how well blood is flowing through the arms and legs.

I also had some strange test where they put this big, plastic bubble thing over my head to measure the gas exchange while I breathe(?).

It was a whirlwind of a week in ICU. Being that the U is a teaching hospital, there were no shortage of doctors, residents, fellows, nurses and student nurses, and pharmacists in and out of my room--a room with no bathroom! There was no privacy and I found myself breaking down in tears every time I had to use the bedside commode. It was the worst and something I hope and pray I never have to experience again (though I know I will post transplant).

After 8 days in the ICU, I was transferred back to the cardiovascular medical unit. The epicardial ablation was successful. The VT was controlled--or so we thought. The doctor did say, however, that the procedure allowed him to see just exactly how badly scarred and damaged my right ventricle is and that heart transplant was the logical next step.

A few more days in the CVMU and, after 12 days total in the hospital, I was allowed to go home. But I would be back...

If you're new here, start with this post and follow along in chronological order.