Two years ago, my friend Thomas wrote in the Washington Post that he’d just saved someone’s life and he was thrilled about it. Thomas had donated a kidney to start a chain of transplants. His post got a lot of kind words, a few Facebook shares, and, as of today, eight comments.
Recently a medical student, Michael Poulson, published an article under the headline "At 18 years old, he donated a kidney. Now, he regrets it." The reaction was very different: His post went viral and inspired more than a thousand comments on the Washington Post website.
Clearly, Poulson’s dramatic tale of disavowing his act of altruism resonated with the public in a way that Thomas’s enthusiastic endorsement did not. The difference in reactions says at least as much about our society’s attitudes toward selfless behavior as it does about debates over the small but real risks involved in kidney donation.
A potential to save thousands of lives
This discomfort with donation has a powerful impact. A hundred thousand Americans are waiting for kidney transplants alone; as many as 80,000 more, mostly people of color, are eligible for a transplant but never make it onto lists. Kidney donation is a laparoscopic procedure — that is, minimally invasive — with a typical hospital stay of two nights. The risk of death during surgery (three in 10,000) is lower than for having a C-section.
If just one in 10,000 people donated each year, there wouldn’t be a shortage. That would be one of the great public health achievements of the 21st century: More people in the US die from that shortage each year than all American deaths in Iraq and Afghanistan this century. Each transplant saves the government about $150,000, so what’s preventing us from ending the shortage is more a lack of willpower and awareness than a lack of options.
Our understanding of the risks is evolving, but they remain low
Poulson said that he had been misinformed by his doctors about the risks inherent in the procedure. When he donated, the best guidance was that donation didn’t impact the donor’s long-term health. Later, better studies found that donation created a 1 to 2 percent risk of kidney failure that wouldn’t exist otherwise Another, controversial study — the one Poulson focused on — even found that donors were about 5 percentage points more likely to have died 25 years post-surgery than if they hadn’t donated.
To be clear, donors are still healthier than the general population, whose life expectancies are shorter and chances of kidney failure are higher. Donors are healthier than average before they donate and remain healthier after, but their risks are higher than if they hadn’t donated at all.
Now, I sympathize with Paulson’s distress. I donated in 2011, around the same time Poulson did. I too was young when I donated — 26, clearly more mature than 18 (98 percent of donors are older than 18) but still feeling a certain youthful invincibility.
I was told the studies were uncertain. I was told that all donors lose about 35 percent of their kidney function (disclosing that is a legal requirement) and that there was a risk of death and complication during surgery (also required). But to some extent, I too convinced myself that donating a kidney was a free lunch — I’d save someone’s life with no harm to myself.
So I too was upset when I read the new studies. Yes, donors get waitlist priority if they ever need a kidney, and a 1 percentage point increase lifetime chance of kidney failure isn’t so great (3 percent is the norm), but it was still 1 percent more than I’d planned. I knew that having only one kidney presented a risk, but reading a study finding shortened life expectancy was shocking — even if that study would later come under fire.
Communication to donors, and follow-up, can be improved
Poulson may well be right that doctors and other care providers should better communicate that we don’t yet know all there is to know about the risks of organ donation. Yet as a future medical student, surely he might have intuited that our understandings of many aspects of health care are not complete.
And it is simply inaccurate for Poulson to say we do not know the number of kidney donors whose kidneys fail or what happens to them when they do. The very studies he cites are based on a comprehensive database of all kidney donors and all instances of renal failure in the United States.
Still, Poulson is surely correct that some policies involved in could be improved: The required follow-up time for donors is only two years, which I agree is unacceptable. Donors deserve annual follow-up appointments and guaranteed health insurance throughout their lives.
I had donated my kidney to someone I didn’t know, so if Poulson’s family disagreed with his donating to his step-cousin, you can imagine how mine felt. My parents were upset and furious. I told them that no increased risk had been found, but they didn’t believe me. And it turned out that in many ways they were right. (As parents often are).
But unlike Poulson, I don’t regret donation, not at all. In fact, I think it was the best decision I ever made. The months before and after I donated were the happiest I’ve ever been, and I truly can’t describe how it feels to save someone’s life.
I met John (my recipient) in March of 2012. I was a lawyer then, and I had to work late that night. Taking time out of the day was hard. But of course I wouldn’t have missed the chance to meet John for anything. I remember striking up a conversation with my cab driver on the way there, telling him I was going to meet my recipient for the first time. He was duly impressed.
My recipient's story
When I met John, he was charming and charismatic, incredibly eloquent about his experience, which had been grueling. He was 46 and had been on dialysis for eight years with no end in sight. He had played semi-pro football before his disease, but dialysis had left him homebound. He’d gained weight, was tired all the time, and was ashamed to leave the house. After four years, his partner had left him. When he got the call that there was a willing donor, he dropped the phone in shock.
John is about a foot taller than me; we look ridiculous side by side. But when I met him, something clicked, and I felt like in some deep way we were always meant to be a part of each other’s lives.
I joke to my friends that I’m still chasing the high of donating, which is why I work in the transplant field full time, advocating to make transplants easier to ask for and easier to give. So I have my own biases and blind spots. My experience can’t stand in for that of all donors. But it’s important to know that while Poulson’s viewpoint is valid and worth sharing, the vast majority of donors view donation as a blessing. Risks and complications exist, but 95 percent of donors would donate again. (Seven different studies all find this result.)
And that brings me back to where I started: What is it about Poulson’s negative experience of donation that made people so much more interested in sharing it than the more typical positive accounts by other donors?
We as a society venerate self-interest and have a hard time making sense of acts of self-sacrifice, like giving an organ to save someone’s life. When someone else donates, it raises uncomfortable questions about our own moral choices. Would we donate in their stead?
No one is ever obligated to donate to anyone for any reason. Still, it’s a question we don’t like to think about. Instead, we collectively gravitate toward stories of donor regret, like Poulson’s, because they confirm our worst fears in a way that’s oddly reassuring. I fear his story gave people license to say to themselves, "I knew that making a sacrifice was a bad idea all along."
That attitude not only dissuades people from donating, it also prevents our political system from solving the transplant crisis and treating donors with the respect they deserve. No one’s obligated to donate, but everyone ought to support donation.
Part of why I do the work I do is because I believe in the value of public service and self-sacrifice. Mr. Poulson’s perspective is important and shows the need for reform, but don’t let his regret erase the pride tens of thousands of donors take in having saved the lives of the people we care about.
Josh Morrison is a kidney donor and co-founder of the nonprofit Waitlist Zero, which supports living donors and living donation.
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