science of us

I Was Rejected From Being an Organ Donor for Being ‘Too Emotional’

There was a time when the Academy Award nominations completely wrecked me.

As a kid in the ’90s, I watched as Hollywood cut into NBC’s The Today Show programming to celebrate a variety of nominated actors and films, none of which were a part of the movie I was rooting for: the Olympic figure-skating romance from 1992, The Cutting Edge. No D.B. Sweeney. No Moira Kelly. Nothing.

“I hate the Oscars,” I said, unable to hold back tears. “They never nominate anything I like.”

These days, the nominations don’t get to me in quite the same way, but I’ve remained a pretty emotionally expressive person — something that backfired on me last year, when I tried, and failed, to give my cousin one of my kidneys.

My cousin, who’s 29, has suffered from Autosomal Recessive Polycystic Kidney Disease (ARPKD) since she was 10 years old. The disease has left her run-down, exhausted, and unable to lead a normal life. I wasn’t a match for her, as it turned out, but I could donate my kidney to a stranger — which, in turn, would help my cousin get a kidney more quickly from someone else. Being single and healthy, I deemed myself a perfect candidate, as I didn’t have little children to look after like so many of my 30-something peers. Plus, as someone who works from home, I could recover from behind a laptop.

“After the surgery, you’re going to hurt like hell,” said the transplant coordinator at the beginning of my all-day consultation.

This wasn’t exactly a surprise to me; I’d assumed that having an organ extracted from your body wasn’t the equivalent of getting licked by a puppy. But still, hearing it from the coordinator made the whole process seem more real. Suddenly, I was more aware of the magnitude of what my body would go through. I started to tear up.

I powered through the rest of the all-day appointment, getting blood work, a CAT scan, and other procedures. I also went through a litany of interviews with a nephrologist and social worker, among others, where I was encouraged to disclose any and all anxieties; I talked about my history of depression and my concerns about body image (who’s really jazzed about scarring?). By the end of the day, I felt more resolute about the donation process, and wanted to schedule the psychiatrist appointment — the next step in the process — as soon as possible so we could start moving ahead.

When I met with the transplant team psychiatrist, a month and a half later, we talked more about the possible consequences for the surgery.

“My job is to hope for the best, but plan for the worst,” said the psychiatrist. “According to my notes, you cried during the last consultation. Do you want to talk about why?”

I laughed. “When it’s a kidney you’re giving up, I think it’s okay to be emotional,” I said. Privately, I shrugged off the question: Wouldn’t it be pretty common to cry when talking about surrendering an organ?

Then, he asked me what would prove to be a crucial question: “How would you feel if your cousin got a kidney but her body rejected it?”

I paused. I wanted to be honest. I thought about all that my cousin had gone through up until this point, and the idea that she’d have to go through it all again. And after hearing about the possibility of infections and potential out-of-pocket expenses that came with being a donor, I selfishly considered what it would be like to discover that my own physical and monetary ailments had all been for naught.

“I’d feel devastated.”

At the end of our nearly hour-and-a-half chat, he leveled with me: I was an at-risk candidate for kidney donation — based, in part, on my “emotional response.”

He had multiple concerns, he told me, citing a report published in the American Journal of Transplantation in 2007 titled “Guidelines for the Psychosocial Evaluation of Living Unrelated Kidney Donors in the United States.” A handful of the factors listed in the report as low-risk indicators — no diagnosable psychiatric disorder, financial resources that could cover unexpected costs, and history of reasonable adaptation to typical life stressors — were boxes that I, as a freelance writer who suffered from mild depression, didn’t check off.

Also of concern, the psychiatrist explained, was the way I answered the question about how I would feel if my cousin’s body rejected the kidney. “Most unsuccessful donors answered the question the way you did, that you would feel bad,” he said, in a move than felt like a teacher giving a test and immediately going over the answer sheet.

“What do successful donors say?” I asked.

Apparently, they say, “Well, at least I tried.”

Well, at least I tried? It sounded so cavalier, like a response to calling in for a radio giveaway and learning that another caller had secured the free tickets to Monster Jam. I would never be that casual. After all, if I cried over something like The Cutting Edge failing to get a Best Picture nomination, why would I not cry over my cousin’s failing health? The irony was that being a highly empathetic person, the very thing that proved to be my downfall, is also what drove me to consider donating in the first place. Plus, feeling like I had let down my cousin further justified the psychiatrist’s point — I was even taking this rejection too hard.

In the weeks following this consultation, when I would tell friends and family what happened, I asked them the question involving the worst-case scenario, assuming that most people with would answer the way I did.

“Well, at least I tried,” my brother said.

“Well, at least I tried,” said my mother’s best friend.

You’ve got to be kidding.

But surprisingly, one person who didn’t answer this way was Tinsy Labrie, a Pittsburgh marketing professional who successfully donated her kidney to her brother-in-law in 2009.

“When they asked me that question, I probably said I would feel guilty,” said Labrie. “My kidney wasn’t good enough for him.”

Not exactly a passionless response. In fact, while sharing donor stories, I discovered that ours matched in a lot of ways, though of course with different end results. For example, one of the reasons why I considered donating was because I was single and wasn’t sure if I’d ever have children. Similarly, “I knew I was never going have kids,” Labrie said. “For me, it was a way to give life to someone.”

But while our outlooks and personalities were similar, our situations did have a few significant differences. Labrie was a direct match for her brother-in-law, whereas I would be donating to a stranger, which made me more of a flight risk. She also had a steadier career lifestyle than I did as a freelance marketer/writer, where she was able to take six paid weeks to recover before returning to work (which filled the “financial resources that could cover unexpected costs” quota in the 2006 report). “I got disability pay, so it was really no hardship at all to me,” she said. “It was like I was going to work every day.”

But I, as a single freelancer with less-than-ideal health insurance, don’t have the same safety net. And if I wasn’t able to work or make money while healing, then the transplant coordinator was right: I would probably feel like hell for a while, for a variety of financial and physical reasons. Maybe that was enough of a red flag.

“After you give it and you’re done, the focus is on the recipient because everyone wants [them] to get better,” Labrie said, but “going into it, the focus is on the giver.”

Byers “Bud” Shaw Jr., a professor of surgery at the University of Nebraska Medical Center who trained under Thomas E. Starzl, whom many consider “the father of modern transplantation,” echoed this sentiment.

“There was a football coach when I was growing up in Ohio,” said Shaw, “that didn’t like to pass the ball because he always said, ‘When you throw a pass, four things can happen and three of them are bad.’ I used to give a lecture about living donors and say, ‘Four things can happen, and three of them are bad.’”

“One of the syndromes that they don’t talk about much is post-donation depression that some people get,” he said. “They’ve made parallels with postpartum depression. It’s kind of like, ‘Okay, I’ve done this wonderful thing. [Now what?]’ They get concerned about that.” According to the National Kidney Foundation, somewhere between 3 and 10 percent of living kidney donors experience depression post-surgery. Notably, though, less than one percent say they regret the choice to donate.

So I still struggle to accept the idea that I’m “too emotional” to be a donor. Maybe my career as a freelancer meant I wasn’t the right candidate (and maybe “too poor” would have been a more accurate disqualifier), but the way I saw it, acknowledging the consequences was an asset to becoming a donor, especially when acknowledging that I’d be devastated didn’t stop me from still wanting to donate.

At least I tried, as they say. But more importantly, I learned that in a crisis, I’d do what I’d always hoped I would: spring into action. And this time, it was because of how I felt.

I Was Rejected From Organ Donation for Being ‘Too Emotional’