Kidney Donors Don’t Get Paid, But the Rewards Are Very Real

In previous posts, I’ve described some of the enormous benefits of a live vs. deceased-donor kidney transplant for the recipient, but did you know that there are many very real benefits to the living donor, too? For family members or couples, the benefits are nothing short of dramatic. And I’m not just talking about feel-good points.

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For a family, the practical benefits can be as concrete as money in the bank. A spouse or parent whose ability to work was limited by dialysis for a long period may gradually be able to resume a full-time schedule–maybe even launch a new career. That can substantially improve the family’s ailing financial health as well.

For family caregivers, particularly, donating a kidney to the loved one you’ve been caring for can bring huge relief. The reduced stress and no doubt improved sleep can have considerable benefits in energy, mood, overall outlook, and, as a result, even job satisfaction.

Then there’s the extraordinary motivation of saving a loved one’s life or turning it around. A living donor I know who’d donated to her husband described her decision as “purely selfish. I wasn’t about to lose him,” she insisted. I know the feeling.

Seeing someone you love–in my case, my adult son–who’d been pale, weak, and listless for months or years gradually become their old self again is pretty powerful. And a donor whose partner wasn’t interested in intimacy during a long period of ill health may see a positive change in their relationship.

Want to improve your social life? Give your partner a kidney! Couples who have been uncomfortable for a long time about socializing—whether because of physical obstacles or simply due to the dialysis patient’s lack of energy or interest—may soon be able to enjoy evenings out with friends or family.

For anyone who donates a kidney—even to someone they don’t know—the benefits are nearly universal:

The feeling of personal gratification is indescribable. Knowing that you’ve helped give someone—anyone—a shot at a healthy, productive life—is an extraordinary feeling. Living donors in studies report a boost in self-esteem, and 9 out of 10 say they would do it again. Through donor-support groups I’m active in on Facebook, I’ve been struck by how life changing the experience has felt for most of us, including the few who have later had complications or whose recipient didn’t fare well for as long as expected.

A fascinating journal article inspired this post. The researchers argue that for the above reasons and more, transplant centers considering a potential donor’s relative risk might do well to acknowledge and give weight to the undeniable tangible benefits for certain donors.

“Van Pilsum Rasmussen, S. E., M. Henderson, J. Kahn, and D. Segev. “Considering Tangible Benefit for Interdependent Donors: Extending a Risk–Benefit Framework in Donor Selection.” American Journal of Transplantation 17, no. 10 (Oct. 2017): 2567-2571.

Wear a Mask! The Life You Save May Be My Son’s

As a kidney recipient, my son, Paul, and other transplant recipients have to take essential anti-rejection medications to keep their bodies from rejecting the precious new organ they were given. Unfortunately, to avoid rejection, the meds have to lower the body’s natural immune system. The trick is to do that without the recipient’s getting an infection. With the horrific surge in COVID-19 cases throughout the country and around the world, this is not a theoretical point. When transplant recipients contract COVID, they have a higher risk of severe complications. My son’s immune system just isn’t protecting him enough, but your mask can help.

When I read reports of people insisting on their right not to wear a mask or to social distance, it makes me sadder, angrier, and more scared by the day. Scared, of course, for my immuno-suppressed son, to whom I donated my kidney in 2006, and scared, too, for my friend and co-author, Betsy, who is on dialysis; and for old friends with cancer. And for new friends in the kidney community; for anyone who’s a health care worker; for my husband and me and our healthy peers–all at high risk because we’re in the well-over-60 set–and for the otherwise healthy 30-somethings, like my daughter, who are at risk if their friends and neighbors don’t wear masks.

I could go on.

I’m reminded of the controversy over secondhand smoke. I can recall heated arguments with smoker friends when I thought we should sit in the nonsmoking section of the restaurant. As a society, we decided years ago that your right to smoke in public ends with my right not to have to breathe that dangerous air. It took decades of research, lawsuits, prosecutions, and, of course, far too many deaths, to get to that point. We don’t have the luxury of years or months or even weeks to debate this one. We need to help protect one another’s health right now–whether or not we love (or even know) the person next to us. If not my son, someone else’s.

When I wrote my original blog post on COVID-19 resources for kidney patients, back in March, I was naively certain it would be less relevant by this past summer. When I updated it in July and reported that things were hardly back to normal here in North Carolina, I was still watching for a light at the end of the tunnel.

A glimmer of light came in the fall, so my son went back to work after taking a months-long leave because he works with the public. But now we’re nervously watching cases rise again, though fortunately still not as dramatically in our area as they are in other parts of the state and country.

On the bright side for the kidney community, as I noted in July, many U.S. transplant centers that had suspended living-donor kidney transplants since the pandemic have resumed them. And that’s critical because kidney failure and the need for a transplant don’t stop just because there’s a pandemic going on. Naturally, the coronavirus adds a few extra layers of complexity to an already delicate process. But with proper precautions and an abundance of skill and care, live donations and transplants are proceeding and succeeding.

If your donation to a kidney patient was put on hold because of the pandemic, don’t hesitate to contact the transplant coordinator for an update. Also, periodically be sure to check this link for current COVID-related information about living donation and upcoming transplant evaluations. And, oh yeah, wear the damn mask! My husband, son, and I proudly did on the recent kidney walk in North Carolina.

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And happy Thanksgiving! Even though the holiday may look and feel different this year, most of us have something to be thankful for. For starters, I’m thankful for my excellent health 14 years after donating my kidney.

Real Funds and Real Sun for a Virtual Kidney Walk

Well, my husband, son, and I participated in the 2020 North Carolina virtual kidney walk this weekend. Yes, it was different from all the others we’ve walked in, but many things were familiar. Most important was the opportunity to raise sorely needed funds for kidney disease research and awareness. By the end of the day, with fundraising still going on, they’d already raised more than $100,000!

All laced up, and masked up, of course, and ready to walk! That’s Paul on the end and my husband, Neil, in the middle.

And it’s always special to have an opportunity to hear moving stories from kidney recipients and donors, even if they had to do it online. It would have been great to meet them in person. A few takeaways:

A familiar, sobering one, came in hearing from transplant recipients and dialysis patients and learning that, like my son, Paul, their kidney disease diagnosis had come as a shock. One young woman said she’d felt sick one day and gone to the ER, and learned that she had only 15 percent of kidney function. Another was a seemingly healthy, young fitness instructor who developed baffling and serious symptoms. After multiple biopsies she was diagnosed with a rare kidney disease, FSGS. She was fortunate to receive a transplant 4 years ago.

It bears repeating–the symptoms of chronic kidney disease are usually not apparent until it’s advanced nearly to kidney failure and the need for dialysis or transplant. That’s why prevention is so critical and early detection so important. And when a kidney is needed, living donation is the key to shorter waits and better outcomes.

When a couple of the donors spoke, I found myself nodding in agreement, as always, at what a positive experience donation is for the donor, not only the recipient. Eerily, one of them used almost the exact words I’d used a couple of weeks ago in a video I filmed for Donate Life/WELD: I was surprised at how incredibly gratifying it was for me personally…I never expected the impact it would have on my own life…

Luckily, this walk may have offered the best weather we’ve ever had for a kidney walk: a breezy, sunny day in the 70s. And that was real, not virtual.

Still Walking After All These Years–But Virtually

Another Kidney Walk date is approaching: Sunday, November 15. My husband, son, and I (our daughter’s up in Brooklyn) will be “there” as usual. Because of the pandemic, this year everyone will be walking in their own neighborhood or location of their choice in the 2020 North Carolina Virtual Kidney Walk. That’s a first.

We’ve walked in more kidney walks than I can count: four or five recent National Kidney Foundation events starting at the Durham Bulls Ballpark location (including last year’s coldest one ever); maybe another four or five NKF walks in Research Triangle Park, which wove through the campus of my long-time employer, RTI International, often a sponsor; plus a few Kidney Kare run/walks in Carrboro, NC, sponsored by the University of North Carolina Transplant Center, where I donated a kidney to my son in 2006.

Just a small sample of my collection of tee shirts from many years of Kidney Walks in North Carolina.

We’ve walked in blistering heat, when the water bottles the helpful volunteers were distributing were downright hot; in chilling cold, with our hoods up and gloved hands clutching thermoses; stepping gingerly over deep puddles, dripping wet as we shunned umbrellas (so far never in snow). Still, the events are usually fun and always inspiring. In the midst of the upbeat music, entertainment, and snacks, there are of course speeches, information, organizations with handouts (so excited that Donate Life/NC WELD–Women Encouraging Living Donation–had a table last year), and health screening booths.

I remember the middle-aged man who spoke to the gathered walkers before the start of the walk a couple of years ago. He described being at one such walk a few years before and deciding to do the screening. There he’d discovered to his shock that he had stage 4 kidney failure. That Kidney Walk saved his life: he began dialysis within a few months and was able to have a transplant a couple of years later.

It bears repeating: chronic kidney disease is a silent killer. Most of the more than 30 million people in this country who have it don’t know it because they don’t have symptoms yet—and may not until it’s too late. The transplant center and NKF have mobile units that do screenings around the state throughout the year. Education, screenings, and research all cost money.

That’s why we walk, wherever. Proudly wearing bibs that say DONOR (me), RECIPIENT (my son), or DONOR FAMILY (my husband), we chat with other walkers (this year it will be through masks). We’ve met hopeful families of kidney patients desperately in need of a kidney, transplant recipients happily walking with a bounce in their step for the first time in years, patients who’ve been on dialysis for more than a decade and may never have a transplant because they have too many other serious health conditions–some are not strong enough for the walk but come out to volunteer and help raise funds for awareness, education, and research.

Please consider donating whatever you can or just share this post on social media or email it to your families and friends. But whether or not you donate to this virtual kidney walk, or to any kidney disease organization, please spread the word about the importance of kidney health—and be sure to get your kidneys checked.