The Greatest Gift

Carol Offen

Between us, my son and I have four kidneys—not very remarkable, except that he has three of them. I gave him one of mine about twelve years ago. The reason was simple: after spending nearly two years on dialysis, he clearly needed the kidney and I didn’t. I still had another that worked just fine so it was a perfect opportunity to share resources within the family. Today even unrelated people in different parts of the country can do the same, thanks to sophisticated computer algorithms. But this was more than twelve years ago.

My son, Paul, had the extraordinarily bad luck to develop chronic kidney disease—which can gradually lead to kidney failure—when he was in college. He was otherwise healthy, we had no family history of it, and he didn’t have diabetes or hypertension. Plus he was skinny.

What he had was a lingering strep infection.

When I gave a talk at a Rotary Club recently, there was an audible gasp in the room when I said that. In other words, this was one of those things that we think just happens to other people, and I was standing there attesting that it can happen to any family.

When it happened to our family, and our son’s kidneys began failing just a few years later, we too were disbelieving. The doctors had told us it was something to monitor but might take twenty years, if ever, to get to the point of kidney failure. We’d tried to put it on our mental backburners.

Yet only weeks after his college graduation, we sat, dazed, in his doctor’s office, as we were told that he would need a transplant—soon—and dialysis in the meantime. That meant his best option was to get a donation from a live donor.

My husband was the right blood type, but he’d had a kidney stone, so he was eliminated right off the bat. Our then-fifteen-year-old daughter, Nora, was too young to be a donor. I was the only one who’d stepped forward who could donate. Of course, I would do it if I could. Paul also was on waiting lists for a deceased-donor kidney, but in our state, North Carolina, that could mean a wait of five to seven years.

If he had a live donor, though, the transplant could probably happen in just a few months and be scheduled under optimal conditions. Live kidneys usually start to work immediately—those from a deceased donor sometimes take weeks to “wake up” and the patient might need to stay on dialysis until then. For these reasons and more, a live-donor kidney typically lasts longer and offers a better shot at long-term health. I know of recipients who’ve had theirs for thirty-five years or more; deceased-donor kidneys very rarely survive that long.

But to say that I was an unlikely living donor is an understatement. If my high school yearbook had had a category for “Least Likely to Be a Living Kidney Donor,” that would have been me. I’ve always been a wimp. I faint at flu shots, blood draws, and IVs. In fact, I once passed out in anticipation of a blood draw that never even happened. I was standing in line waiting for my college-entrance physical. I hadn’t seen any needles or anything— I just thought it was going to include a blood draw.

Given the very real possibility that I could be Paul’s donor, with my wimp background in mind, I figured I’d better start preparing myself, at least by observing dialysis. My first visit to the dialysis center was a relative success: I didn’t pass out. Of course, I also didn’t allow myself to gaze at anything for long. But I attended every dialysis session in those first few months, and I forced myself to watch when the technician inserted the needle. In fact, I paid close attention, obsessively filling steno notebooks with blood pressure readings and numbers that quantified an obscure brand-new vocabulary: needle size, flow, dry weight (his target weight without the extra fluid that builds up between sessions). At a stressful time, I found comfort in having something concrete to compare. I won’t pretend that I understood it all, but having a professional editor’s eye for detail served me well. When a reading differed sharply from his usual numbers, I watched all the more closely and occasionally notified a nurse.

Meanwhile, we spent much of the time he was on dialysis ensnared in a bureaucratic dilemma, sorting out insurance issues that delayed the donor testing. No longer a full-time student, Paul had been kicked off our family’s health plan once he graduated college. If the Affordable Care Act had been in effect, our health plan would have paid for Paul’s costs and his donor’s, so he could have had the transplant more than a year sooner. Fortunately, the hospital eventually agreed to shoulder the costs if Medicare did not come through in time (it ultimately did).

Once I got the green light to begin testing, I excitedly began a full schedule of appointments/interviews with a transplant nurse coordinator, social worker, psychologist, transplant nephrologist, and a transplant surgeon. To ensure that a potential donor not feel pressured into agreeing to donate, most transplant centers designate a separate team of professionals for the donor. My team assured me that if I were to change my mind at any point, Paul need never know.

Knowing my wimp history, my nurse coordinator gently helped me through the testing. She had the lab take lots of tubes of blood at once to avoid their sticking me extra times. She had me apply lidocaine to numb my arm before blood draws. I’d call her the day after each test and hold my breath till I learned if I’d passed. Even after months of testing, I knew I could still be eliminated. Would I secretly be relieved, I wondered (hey, I tried)? Much to my surprise, I realized that I’d be crushed. I wanted to be the one to free our son from his nightmare. I also wanted to prove to myself that I could meet this physical challenge and conquer one of my biggest fears.

When at last the surgery was scheduled, I was giddy with excitement—and panic at the thought of major surgery. I thought I felt an intense pounding in my chest—were those palpitations? Also, it seemed hard to take a deep breath. Was that normal?

I shared my concerns with my nurse coordinator, who listened sympathetically and promised to talk to the surgeons. She called back to say they had assured her my heart and lung function were just fine. Perhaps I’d like to talk to the psychologist?

When I explained my worries to the psychologist, she surprised me by asking gently if I’d like to reschedule the surgery. Ohmygod, she thinks I’m having second thoughts! Nothing could have been further from the truth. “You don’t understand,” I told her. “I’d be the same if I were having my tonsils out.”

Both surgeries went smoothly. I had been prepared for the relief and the satisfaction I experienced but not the incredible high. On that first night, what little sleep I had was tranquil, for the first time in years undisturbed by fears of what lay ahead. I knew Paul wasn’t out of the woods, but for now I was content to take this first victory in stride, pat myself on the back, and say “job well done, Carol—I’m proud of you.” Yup, I felt justifiably proud of myself perhaps for the first time in my life.

After I was discharged from the hospital and friends visited, they were surprised that I came to the door in street clothes. I was as amazed as everyone else. I felt so much better than I’d thought I would that I confided to a friend, only half-jokingly, that I almost wondered if they’d done it right.

I’m still doing fine more than twelve years later and I don’t miss my left kidney at all. It’s still doing a good job in its adopted home, Paul’s body. So, yes, I’d do it again in a heartbeat. So would most living donors I know—and I know a lot of them through social media. In April 2018, I helped set a Guinness World Record for the largest gathering of living donors: 410 of us met in Chicago’s Millennium Park, at, appropriately enough, “the Bean.” There I met people from all over the country (a few from Canada and even India!), representing varied demographics. Many, like me, had donated to a family member, but others gave to an acquaintance from church, a fellow parent at their child’s school, a cousin, a stranger they’d met online—and even to an unknown recipient.

In my living donor online support group, members who’ve donated in recent years routinely mention many options we didn’t have back then. For one thing, I frequently share or retweet messages from kidney patients who are searching for living donors, pleas eventually seen by hundreds or thousands of strangers.

Although Paul was surely unlucky to develop chronic kidney disease in the first place, he was actually one of the lucky ones. He got a kidney from a live donor less than two years from the start of dialysis. Twenty months certainly feels very long when you spend three days a week tethered to a dialysis machine for half a day, but thousands of kidney patients languish on the national waitlists for ten years or more. Every day about sixteen people die because they didn’t receive a kidney in time.

Why so long? It’s a sad but simple matter of supply and demand. At this writing, close to 100,000 patients in this country are on waitlists for a kidney from a deceased donor. Did you know that only 3 out of 1,000 people die in such a way that even makes it possible to use their organs (I didn’t know)? It’s no wonder that the pool of deceased-donor organs is so small. Fewer than 20,000 kidney transplants are performed each year, including those from living donors. Obviously, there simply aren’t enough organs to go around. (Kidney patients represent the majority of people waiting for an organ; another 20,000 or so are waiting for liver, pancreas, heart, lung, or bone marrow transplants.)

It shouldn’t have to be this way.

The principal reason for the long waits and the tragic deaths that result is obviously the shortage of available organs, but numerous factors account for that shortage. Organ-donation advocates have long been pushing for changes in our foolishly reverse system of organ-donor registration. Rather than letting people opt out if they don’t want their organs donated after their death, as is the policy in a growing list of countries, the United States has an opt-in system: you must select “Yes” for organ donation when you apply for a driver’s license or register online as a donor. In contrast, in Austria, for example, where organ donation is “presumed” unless someone opts out, about 99% of people are donors. In the United States it’s 54%—even though 95% of adults in a Gallup Poll said they favor organ donation.

Until scientists perfect an artificial kidney, or those donor percentages increase considerably, our best hope for reducing the critical organ shortage is through living donation. Because most of us are born with two kidneys and can lead a healthy life with just one functioning kidney (you might say we have an extra), kidney transplants are the most common live-donor transplant. Given that people with kidney failure are looking for just one healthy kidney, live-donor kidney transplants are really the ultimate example of sharing resources—that is, why not share your spare?

Of course, donating an organ is a big decision and not without consequences apart from the kidney. After blood type and tissue type testing to see if a prospective living donor is an acceptable match, donors undergo extensive further testing to make sure they’re healthy enough—for their own sake as well as their recipient’s. They also have a psychological evaluation to make sure they understand and can responsibly make a life-changing decision. It’s still major surgery after all, with the small but typical risks. It means a few weeks out of work for a sedentary job to a couple of months for a laborer, and then, in most cases, a normal healthy life. Studies show a higher risk of donors’ someday developing kidney failure but still a very low risk compared with the general population. Living donors, by definition, are in excellent health.

The gold standard of organ donation traditionally has been to have as close a match as possible because of the body’s instinct to destroy foreign substances. Nearly all recipients also take immunosuppressants (antirejection meds) for the rest of their life to prevent their body from rejecting the new kidney, whether it’s from a deceased donor or a living one. With a close match and antirejection meds, the body can accept the new kidney.

Before improvements in antirejection medications, the vast majority of successful living donor transplants predictably came from blood relatives, like me. That initial gold standard clearly has become less critical, though well-matched living-donor kidneys still have the best chance for long survival.

In addition to the advances in medications, modern computer software has taken the living transplantation field one giant step further, opening up new possibilities for sharing your spare. Not that long ago if a potential donor wasn’t a match for a loved one, the kidney patient was out of luck and might need to stay on dialysis. End of story. When we were contemplating Paul’s transplant, my sister and brother-in-law were both healthy and willing potential donors but the wrong blood type. Kidney paired donation—sometimes called a kidney swap—wasn’t even on our radar at the time.

Now increasingly common, paired donation makes it possible for a kidney patient whose potential donor is healthy, but not a good match, to receive a kidney from a compatible living donor who, similarly, is not a good match for his or her intended recipient. Let’s say you wanted to donate a kidney to your friend Alice, but you’re not a match for Alice. However, Bob is. Bob may be willing to donate to Alice if you donate to his friend John. If you’re a match for John, that’s simple—problem solved.

If, however, that second hopeful pairing isn’t a match, what if you could involve more people? That’s where computers come in. Complex algorithms are now able to look at the myriad matches possible among potential donors and recipients—at one transplant center or, for example, in the National Kidney Registry (NKR) database—and come up with the best ones. Typically, one nondirected (aka “altruistic”) donor—that is, a Good Samaritan who decides to donate to an unknown patient—initiates the paired donation or even a domino donor chain involving still more people. Living kidney donor chains have gotten remarkably long: the longest in the United States, at this writing, resulted in a total of eighty-eight transplants.

The NKR is not the only kidney registry, but it has the largest pool of living donors in the world. It has arranged nearly 3,000 kidney transplants since 2007. It also offers some exciting options for sharing resources, such as advanced donation. For example, sometimes living donors who come to the aid of a friend or neighbor encounter opposition within their own family, who say “what if your child or someone else in the family needs a kidney someday?” Many such donors are comfortable replying that vague “what ifs” shouldn’t prevent them from doing a good deed now. Potential donors who share that concern, however, might well find a new option—a voucher system—to be a reassuring solution. This NKR program allows someone to donate now to someone in need and receive a voucher to enable a loved one to receive a kidney if and when they need it—be it years or even decades later. The registry cautions that it’s not possible to guarantee that a match will be available when that future recipient needs it, but the system certainly improves the person’s chances and can shorten their wait considerably.

Consider the healthy grandfather whose young grandson with kidney disease may need a transplant in several years and who hopes to donate his kidney to the child. He’s afraid though that he might be too old or unhealthy to donate by the time his grandson needs it. Solution: he donates to an unknown recipient now and his grandson will have a voucher when he needs it, providing both peace of mind and the ability to help someone in need now.

The Registry has made impressive advances in storage and shipping, which also enable people to donate a kidney without being in the same place as the recipient—seemingly the most basic tenet of live donation, which is usually performed in adjacent or nearby operating rooms. Typically, donors who live in a different city or state from their recipient are permitted to do some of the testing locally and then travel to the recipients’ transplant center for the rest of the evaluation and the surgery. With remote donation, in some situations a donor who can’t travel to the recipient’s distant state for whatever reason may be able to even have the nephrectomy done locally. The kidney can then be safely shipped to the recipient’s transplant center and placed in his or her awaiting body.

Pairing up donors and recipients doesn’t always require cutting-edge technology. Organizations such as the National Kidney Foundation educate patients and their designated “champion” on using their social networks to spread the word about the patient’s need for a kidney. People are often uncomfortable making such a request for themselves, so these programs focus on showing family and friends how to do it on their behalf. Sharing experiences of individuals who have been there are also inspiring and instructive. Many websites feature personal stories of people who have had a transplant as well as those who have donated. Most of us can easily fathom a donor’s motivation in a kidney swap, but when it comes to understanding that of these nondirected donors, many people are incredulous that someone would give so much to a stranger with seemingly nothing in return. But that’s hardly the case.

Donors of all types generally report a powerful, gratifying feeling from having profoundly improved another human being’s life. Supporting my own anecdotal evidence of living donors’ satisfaction is a long-term study of more than 3,000 living kidney donors. Donors reported a “boost in self-esteem and an increased sense of well-being: 96% felt it was a positive experience,” according to researchers.1 This appears to hold true even when the recipient does not sustain a long period of post-transplant health. Again, I humbly offer my unscientific anecdotal evidence: I know of nondirected donors who have had a memorable, touching meeting with their recipient and those who wished they’d had—and even one who met her recipient and wished she hadn’t; donors whose recipients have enjoyed many years of good health and others who were heartbroken to see their recipient lose the new kidney a few years later; donors who have had easy recoveries and trouble-free years post donation and others who have had lingering health issues.

Yet I have not personally encountered one donor who has regretted the decision to donate. Similarly, I have repeatedly seen donors describe their experience, as I have, as simply “one of the best decisions I’ve ever made.”

Giving a piece of yourself truly is the greatest gift.

 

J. S. Najarian, “Living Donor Kidney Transplants: Personal Reflections,” Transplantation Proceedings 37, no. 9 (2005): 3592–94.

 

Sections of this article were drawn from the author’s forthcoming book, The Greatest Gift: The Insider’s Guide to Living Kidney Donation, by Carol Offen and Elizabeth Crais, PhD, which is a work in progress.