themighty logo

The Illusion of Choice: Being Listed for Transplant


Think back to when you were a kid and someone (father, brother, pal) would amicably offer you two raised arms with closed fists. “Pick one!” they’d say, while simultaneously winking towards the fist that held the object. You smile, thinking yourself clever for catching on enough to pick the correct side. You grin as the hand opens and your prize is inside.

This is the illusion of choice.

I’m starting to realize that most of my major life decisions have happened under the auspices of the illusion of choice. My “choice” to take a prep period instead of PE in high school, when in reality I was not fit to participate in the class. My “choice” to apply myself to theater, when really all my other childhood activities had been extinguished. My “choice” to leave my first university, not taking into account a year and a half of halting chest pains and exhaustion culminating in a cardiac arrest on 2nd Avenue and 7th Street, New York, New York.

My choice to go on the transplant list.

All of these decisions have been influenced, some directly and some subtly, by my heart condition. I was not able to take PE. In many ways, this was a gift: extra time to complete school work, bum around campus, etc. However, it made me markedly different from my peers. I disliked many facets of my first college. But as much as I was beginning to consider alternatives, I’m not sure I would have been compelled to leave at the midpoint of the school year were it not for my episode. When I later decided to study abroad at a school in the UK the obvious interests surfaced above the innate: I’m a bonafide anglophile and have always valued the prestige and promise of the ancient university system. However, a course of study in any of the developing worlds, “destination” and remote programs and anything that involved “exciting excursions to get outside the classroom!” were logistically entirely off limits.

It has taken me the better part of a year to grapple with the fact that going on the transplant list was not my choice. The prospect was presented to me in a diplomatic way; the timing and options laid out in a “no pressure to decide right now” methodology. Or so I perceived at the time because, in fact, the game was dependent on a process behind the façade that superseded my input.

It was in September, a little less than a month after I’d been assured that I needed to “prepare for transplant” that I had a right heart catheterization procedure to check the pressures in and out of my heart and lungs. I was told at the time that there was a 15 percent chance I would not be leaving the hospital after the procedure: that I would be deemed too sick and immediately be placed on the list. Recently, I have learned that, were the lung pressures deemed irreversible, we would not only be discussing immediate hospitalization and a heart transplant, but also a double lung transplant. I could not believe this possibility: I was working 45-50 hour weeks, swimming every several days and had shortness of breath only with exertion. I just didn’t see how I could be so sick as to warrant hospitalization. But then again, I just didn’t see how I could be sick enough to need a transplant at all.

Here I digress for a moment…

…because a strange emotion comes into play at this point in the story. Longing, or rather, belonging. I remember being terrified of having to be admitted, fearful of what that would mean for my job, my family and my health. But there was something disturbingly attractive about the possibility that I would be made to stay. This feeling has flashed in and out of my memories of that time period and I’ve been ill equipped to define it properly until now.

The answer is two-fold:

1. I wanted to prove to myself, again, that I was bigger than my disease. I wanted to prove that I was doing so much despite being so ill and, somehow, a less positive result would validate just that.

2. I wanted to belong. The hospital had nearly always been a place of happiness. I liked visiting with my team and updating them on my life. I liked the camaraderie and the attention when 12 of my closest friends sat in the ER waiting room eating birthday cake while my arm was splinted. I had blurred the line between those that cared for me and those that cared about me. And so, in a place in my life where I was feeling less diversified and more molded into the silicon-valley-millennial-young-professional mold, I equated, not without just cause, being sick to being special. So while I did not want to be ill enough to be admitted, I had different feelings about the (in this vein of logic) mutually exclusive concept being admitted itself.

But let me repeat: I did not want to be ill enough to be admitted.

For some untraceable reason that day the odds were in my favor and I was released, told I would be listed as status two and that my lungs were healthy enough to endure the surgery. I remember feeling unafraid entering the cath lab: the hospital was something I had encountered a dozen times and, frankly, each hospitalization I had previously endured had been brief and relatively successful. But as I lay on the table, head turned to the left to expose the proper vein (a right heart cath is accessed via IV in the right jugular neck vein), I began to cry. “What’s wrong? Are you in pain?!” the scrub nurse quickly rushed to eye level.

“No, I’ve just… It’s been a really long week,” I sniffed, tears making their way down my chin and into my hospital gown. Emotion sufficiently released, I fell asleep. My blood pressure and heart rate in those days were so low (90/60 BP, 61 HR) that I often had no trouble napping: even on a cold, hard operating table. My body just liked being sedentary and sleepy.

There wasn’t much left to do after that. I had already had my pre-transplant education briefing. I had signed away my submission and so had my parents. As the cath procedure was on a Thursday I was told that I would not be presented to the administrative board as a candidate for transplant until the following Friday. I recall thinking how plain and bizarre that was; here was a room of over 30 medical experts, professors and pioneers who couldn’t decide whether I should live or not until the following week, schedule permitting. But here it was, before I could even realize it. It was, ultimately, the doctor’s choice if I would be listed: not mine.

This post originally appeared on A Calculated Risk.

We want to hear your story. Become a Mighty contributor here.