:format(webp)/cdn.vox-cdn.com/uploads/chorus_image/image/63183312/Kidney_donor_lead.0.jpg)
Two summers ago, my father asked if I would give him one of my kidneys.
He was 70 at the time, suffering from kidney disease. I was 39 with a wife and two young kids, and I was blindsided by his request. I just said, “I’ll think about it. Give me the information.”
I did think about it. A year later, my father and I found ourselves at Saint Barnabas Medical Center in Livingston, New Jersey, where doctors would remove one of my kidneys and transplant it into him. It was one of the most difficult decisions I’ve ever made — and in the end, while it was certainly gratifying, what truly convinced me to do it was that all the facts and data told me that it was simply the sensible, practical, right thing to do.
You may have read Dylan Matthews’s account on this very site of his kidney donation to a total stranger. It was a remarkably generous act, and I admire him deeply for it.
But that experience is fairly uncommon. The fact is that 95 percent of live donors give their kidneys to someone they know. Out of the more than 6,000 live donor transplants made last year in the United States, some 300 were donated to strangers. Most donors never thought this is something we would do until faced with the prospects of a loved one going into kidney failure.
For me, that summer conversation with my father led to one of the most complicated decisions of my life. I am 100 percent certain I made the right call — but I did not start out so confident. There was nothing emotionally simple about donating an organ to a loved one. I came away from the experience with some lessons, a few hard-earned, that I hope others who find themselves in the same position I was in will find helpful.
1) You are not a bad person if you have reservations
My father is a generous person who spent his career as a psychologist helping people with their problems. When he asked me for my kidney, I was taken aback — but I also knew he wouldn’t make this request lightly.
I owed it to him to at least do a little research. But I’ll be honest — I didn’t think I was actually going do it.
For the next three months, the information packet he gave me sat in my home office gathering dust. The notion of me taking this risk was scary. How much quality time would my 70-year-old father get? What would this mean for me when I was 70? If my dad had this disease, was there a reasonable risk that one of my children might need a kidney?
I bounced the problem off friends. Most agreed it was a tough ethical quandary. Others thought I just had to do it. A few couldn’t believe my dad would even ask.
Talking this through with friends was validating. I realized that I was not a horrible person for not just jumping in immediately. But giving up a kidney was not so outlandish either.
2) Get the facts before making your decision
It sounds so obvious, but I can’t stress it enough: Faced with such a decision, you really need to gather all the facts before you make up your mind.
A full three months after my parents had first broached the topic, I filled out the two-page living donor referral form and sent it to Saint Barnabas Medical Center so that I could begin learning about the process.
My wife Meghan and I met with a nephrologist (a kidney doctor) who walked us through the procedure. Saint Barnabas had done nearly 2,000 live donor transplants in the past 20 years, with only a handful of donors suffering serious complications, none life-threatening. Because the surgery was laparoscopic and involved only four small incisions, I would be in the hospital for only one to two days. There would be some initial intense pain in the first 24 to 48 hours after the surgery, but it would subside quickly and I could be back at work in two to three weeks.
I could go back to a normal life with very few changes. Exercise was fine, but avoid violent sports — someone might hit me in the kidney. Use Tylenol instead of Advil. Keep a closer eye on my health and get checked out regularly. That was it.
This sounded too good to be true. We were built with two kidneys. Shouldn’t we need both? The doctor explained that we have two of a lot of things: eyes, ears, nostrils, hands, legs. It’s nature’s way of having insurance if something goes wrong with one. And if you only have one of something instead of two, the one you do have compensates. I’ve lost 50 percent of my kidneys, but I’ve probably lost only 35 percent of my kidney function.
Most important, the doctor explained that my dad’s case was not genetic and that the chances my kids would get what he had were remote.
But the doctor was clear about something else: There is no such thing as a risk-free surgery. I might never wake up. I might have an unexpected complication. My dad’s body might reject the kidney — though in that case, they had many options to try to get his body to overcome the initial rejection.
Still, I walked out of that meeting much more open to donating my kidney. Replacing vague fears with actual facts was essential.
:format(webp):no_upscale()/cdn.vox-cdn.com/uploads/chorus_asset/file/15582738/Kidney_donor_1.jpg)
3) The screening process is not just about whether you are a match. It’s about whether you are physically and emotionally healthy enough to give a kidney.
When you decide to give up a kidney, the doctors subject you to a rigorous screening process. They want to make sure you’re capable of giving a kidney — not just physically but also emotionally.
There are many physical tests: blood tests, chest X-rays, EKG, an echocardiogram, and, of course, lots and lots of urine. The bar for kidney donation is so high that a number of studies have shown that donors have a higher life expectancy than the general population. It is not clear why, but the most plausible explanation is that the screening is so comprehensive that to qualify, you must be part of a relatively small, very healthy segment of the population.
The mental screening was no less comprehensive. Meghan and I met with a social worker who asked many unexpected questions. Was I suicidal and did I secretly want to give my dad two kidneys? Who would take care of our kids in Virginia while we were in New Jersey? Would I have paid time off or would I lose wages? Would Meghan’s employer be understanding of her taking time off to care for me?
Those last questions were a reminder of how much class matters when it comes to kidney donations. If you are a middle-class or upper-middle-class salaried employee, it is much easier. If you are poorer or paid by the hour, donating a kidney could be a huge financial hardship and could be disqualifying.
I also learned that a panel would be evaluating whether I was qualified to give my father a kidney. Some of them never even met my father, and that was on purpose. The theory is similar to the adversarial legal system. Every defendant deserves a lawyer to argue their side. Every donor deserves medical professionals to watch out for their interests, regardless of the recipient.
4) The alternatives to kidney donation can be grim not just for your loved one but for everyone around them
Here’s what would have happened to my father if I did not go through with the surgery. He would go on a waitlist for a cadaver kidney. Given my father’s age, the chances that he would get one were low. Moreover, cadaver kidneys do not have the same longevity and do not function as well as live kidney donations.
And the years of waiting for one would be tremendously stressful. He would be on dialysis, spending 12 hours a week on a machine that cleans his blood, and much of the rest of his time feeling tired. Dialysis is not a permanent solution. It’s a stopgap, and life expectancy on it is five to 10 years.
This reality was drilled into me when a colleague told me about how her father had had kidney disease when she was young. Her mother and some of his siblings offered to donate, but he refused. He did not want to burden his loved ones. Instead, he spent years on dialysis. He had to go on disability, and his family watched him deteriorate. He finally received a cadaver kidney but had numerous medical complications and died young. His decision had put a greater toll on her family than just having a loved one give him a kidney.
Not donating a kidney to a loved one in need can come with its own costs to you and your family. And refusing to accept a kidney from a loved one who can help is not necessarily a brave act of self-sacrifice. It may do more harm than good.
5) Donating a kidney to a family member can dredge up some knotty emotional issues
Families are complicated, and they get even more so when you go through the kidney donation process.
The transplant center understands this, which is why early in the process, they tell you that if you decide against giving, the recipient would never know that was your decision. Instead, they would just be informed that you did not qualify as a match.
The role of the spouse is also incredibly hard. Meghan has a good relationship with my parents, but our family and our kids are her priority. My mom, sister, and brother were all of the same mindset: “Dad is sick. How do we help him?” Meghan was thinking something else: “What is best for our young family, and are we putting all that at risk?” I was in the middle weighing both.
And it was harder for her than for me. She had a veto: If she was strongly opposed, the panel would not have approved the surgery and my parents would never know. But what would that have done to our marriage, especially as my father got sicker? The spouse has a choice … but they don’t really. Meghan had her reservations, but to her credit, she never once in the entire process said no.
My parents also had trouble accepting the reality that this was happening. My mom’s first instinct had been to refuse to even ask, and, like me, she had only been convinced after sitting down with the doctors and getting the facts. Until the end, both my parents explored alternatives. It got to a point where we were scheduling the surgery and my mom mentioned that they were still looking at other options, which almost stopped the entire thing in its tracks. I had to look my parents straight in the eye and say, “This is the only sensible choice. I’m doing it. Stop.”
The process also forced me to wrestle with some complex feelings I had toward my parents. I love them dearly and we mostly get along, but there are certain things about them that drive me nuts — pretty standard family dynamics, really. But there came a period when all the little things that irritated me about them were making me irrationally frustrated and angry. Then it dawned on me that in the back of my mind, I had decided that since I was giving my dad a kidney, they now owed me and should adjust their behavior accordingly.
I had to accept that I was doing this because it was the right thing to do, and that it would not magically turn my parents into people they were not. I made this observation to the social worker, who said this was quite common. “We like to say we specialize in kidney transplants, not personality transplants,” she said.
:format(webp):no_upscale()/cdn.vox-cdn.com/uploads/chorus_asset/file/15583145/Kidney_donor2.jpg)
6) Kidney donors aren’t saints
If you’ve had occasion to Google “kidney donations” or look for books on the topic, you’ll find beautiful stories about how profoundly rewarding the experience is. I have been called a “saint” and an “amazing person,” and I’ve been told that I gave “the most generous gift.” I certainly enjoy the praise — I am not a saint, and vanity is one of my weaknesses.
While I appreciate that society puts kidney donors on a pedestal, it comes with unintended consequences. When we paint kidney donation as a truly altruistic, deeply rewarding act, we make it so exceptional as to be inaccessible. The reverence we show to donors and the emphasis the promotional material puts on how rewarding the experience is can end up dissuading people from doing it.
For me, the feelings of fulfillment I would experience from giving my father a kidney were never part of the decision calculus. I had too many responsibilities to think that way.
It really came down to the cold, hard weighing of costs and benefits. Once I understood that at an extraordinarily low risk to my family and me, I could significantly improve my father’s quality of life, I concluded that it was the right thing to do.
If as a society we understood the basic facts and marketed these decisions as pragmatic instead of emotional, the number of people dying every year from the national kidney shortage would be much lower than 43,000.
7) But yes — kidney donation is a deeply rewarding experience.
Of course, the experience was deeply rewarding. When I see my father playing with my kids, it makes me so happy to know that he can do that because of what I chose to do. And when I talk to my parents about the next trip they are planning in retirement, it is wonderful to know that I played a role in making it happen. Best of all, when my kids get older and truly understand what I chose to do, they will view it as a normal and expected thing that you do for others.
I am proud of the decision I made. I feel great about it. The feeling of fulfillment that I have about the experience was not at all the reason I did it. But it is a lovely side benefit.
Ilan Goldenberg is the director of the Middle East Security Program at the Center for a New American Security. In July 2018, he became a live kidney donor. If you are considering kidney donation, find out more from the Saint Barnabas Medical Center Living Donor Institute, the American Kidney Fund, or the National Kidney Foundation.
Sign up for the Future Perfect newsletter. Twice a week, you’ll get a roundup of ideas and solutions for tackling our biggest challenges: improving public health, decreasing human and animal suffering, easing catastrophic risks, and — to put it simply — getting better at doing good.
