LCFC#9: Why do you deserve to live?

Plus: How you get on the list for a new heart

Late one night last October, I rolled over for what seemed like the hundredth time.

“What’s wrong,” my husband asked, very delicately.

“I’m nervous about Monday.”

The Monday in question was October 10, 2022; the first day of my heart transplant evaluation.

My pup WALL-E seemed to sense my anxiety about the transplant evaluation

I didn’t know what to expect, and that uncertainty gnawed at me. I’d prep hand-written questions for work interviews and talking points for parties, and here we were just a few days from a slate of doctors’ meetings, and I didn’t know how to organize my thoughts and fears, rational or not.

“Want to do some research?”

It was probably close to midnight, far past the cutoff time we set for computers, but he knew research would ease my anxiety. He climbed out of bed, grabbed my laptop from my home office and handed it to me. I opened it and sat staring at a blank Google search bar.

“Maybe try ‘what to expect during a heart transplant evaluation’,” he offered.

I typed in the words and hit return. We read the Duke medical center site first, because that’s where I’d be going. It walked us through each test listed on my appointment schedule and what the tests told the doctors. We wrote down questions, then jumped to Mayo Clinic’s site, Columbia’s, University of Pennsylvania’s, Stanford’s, then a few more. Another click or two, and we hit a site that also walked through the tests and doctor visits, and then there was something to the effect of: How do you justify your life over someone else’s?

Essentially: Why do you deserve to live?

Thoughts glugged from my mind like juice gushing from a spilt jug.

Minutes passed.

“So, uhh, what are you thinking?”

My husband was coaxing me back from my thoughtless void.

“I don’t know,” I said. “How can I say my life is more valuable than anyone else’s?”

To cut the nervous vibe of existentialism, we started listing things I was proud of — my work sharing science, my book about astronomer Vera Rubin, teaching kids to swim, teaching people to write.

Here, my niece, nephew and I teach Woody to swim. He’s in it for the Pup Peroni.

But deep down as we, well, really my husband, typed ways we felt I had bettered society, my mind was stuck on one thought: Because I’m me. And that’s enough.

I’m enough.

Right? Wasn’t I finally just enough?

For years, I’d been counseled and coached to remind myself of that very state of mind, one that sometimes reminds me of Pooh’s character, the uncarved block, in The Tao Pooh. Now, that state of mind kicked in at a time when I might have needed just a little bit more validation — especially as I walked into what seemed like a black box system that would decide whether I, or someone else, got a healthy new heart.

I think, after minutes, and what probably seemed like hours to my husband, I finally told him I could accept my fate, if necessary, but I wasn’t done living yet and that’s why I deserved a new heart.

I had a to-do list, damn it, and not all the boxes were ticked.

“That’s the fire,” he said.

He was right and still is; that’s the fire we all require for life, every day, even on the most wearing ones. It’s grit, a characteristic researchers say is a predictor of success, no matter how you define success.

I will admit, a few months ago, when I could barely pull a shirt over my head, I didn’t feel like I had much grit. What I needed, what I craved, was just to be enough. I desperately wanted doctors to look at me and say that very thing I’ve struggled for decades to convince myself of.

Perhaps the doctors did think I was enough. Or, more likely, I was much sicker than I’d let myself believe (and in the right place at the right time). I was listed for a heart transplant a few days into the evaluation.

When you’re listed, there are six buckets, or status categories, you can fall into, Status 1 being the highest, Status 6 the lowest. The ranking system is based on urgency, who needs the heart the most. I was listed at Status 2 (because even an IV bath of lidocaine used as an antiarrhythmic couldn’t soothe my rapidly beating heart).

Doctors started using this six-status ranking system in 2018. Before then, there were only three categories. The Organ Procurement and Transplantation Network, which oversees organ transplant, updated the donor heart allocation system roughly 4.5 years ago to help get very sick people hearts, even if they lived in more remote parts of the country. (Maybe it was also to eliminate some of that pressure to have people justify their lives during transplant evaluations, I don’t know.)

Anyway, the system switched in October 2018 and data show it has improved the way donor hearts are matched to the people who need them most. But, there are still disparities in who gets them, and in some ways, the current system continues to exacerbate those disparities. Doctors are basically saying the current heart allocation system still has flaws.

A set of those same doctors suggest that a statistical technique called predictive modeling might be better at assessing a person’s status than the current ranking system. The team working on the models fed a whole lot of data, including a person’s age, diagnosis, blood flow, kidney filtration, and any medical equipment they use, into two different predictive models and, after training them, told the models to assign a status to the individuals whose data were used. The predictive models outperformed the current ranking system, the team writes in a paper out this month.

In a podcast discussing the results, Mount Sinai cardiologist Sean Pinney, says the paper, as the authors note, is an interesting thought experiment in using people’s physiological data to assign them a status. The current system was good, but the models were better, the data suggest.

Though the work specifically focused on heart allocation, the research touches on a broader issue related to transplantation, the overhaul of the Organ Procurement and Transplantation Network. The overall system in place now has reportedly made people feel that they aren’t good enough to deserve an organ, specifically because of where they live. This is particularly the case with people in need of new livers.

That “not enough” feeling is horrible when you’re healthy. It’s potentially traumatizing when you are sick and need lifesaving medical treatment. And, it illustrates the fear I couldn’t communicate that night last October to my husband as we sat thinking of the very reasons I was enough. The fear was I could be WAY more than enough but the cards weren’t in my favor, i.e. the system failed me. It’s not the experience I had. But it is an experience that exists, in contexts far beyond transplant organ allocation.

I, alone, don’t know how to solve those issues, other than to share the work of people who are looking for ways to fix them. And what I can and can’t do as one individual leads me back to my opening question of why I deserve to live.

What I’ve realized is that maybe the best way to evaluate each day is not by listing resume items, but by asking: Did I have grit today? Did I use it to do good? Did you?