Contributor Spotlight: Workplace Friends as Donors

Many people assume that you have to be a blood relative to donate your kidney to someone. And in the early decades of living donation, that was pretty much the case. Family members are still the largest single group of living donors, but the percentage of unrelated donors has been growing. This contributor spotlight highlights two of our book’s contributors who learned firsthand that a donor might actually be someone you know from work. (Afterward they often do feel like family.)

One of our contributors–Linda Watson–chose to donate to a colleague friend (my co-author, Betsy!). Another, Joe Reichle, instead received his kidney from a former student’s spouse.

Linda Watson and husband, Joel, on the Georgetown waterfront in Washington, DC

Linda had worked with Betsy for years before she learned how serious her friend’s health problems were. Still, as Linda relates in her chapter, like many people back in 2003 she didn’t realize that she herself could possibly be eligible to donate. But when she saw several other colleagues step up to be tested, she knew that this was what she wanted to do.

Linda explains that her decision also coincided with a time in her life when she very much needed to “do something life affirming.”

Receiving Linda’s kidney enabled Betsy to get off dialysis; produce urine once again (“I never thought I’d get so emotional about seeing a bag of urine,” Linda writes, describing her first visit to Betsy’s hospital room); and return to her position at the university full time. (About 17 years later Betsy would need another transplant–while our book was in production, in fact. Happily, she’s back to working full time again.)

Today Linda, who is in phased retirement from her work in speech and hearing sciences, clearly leads a full life. Besides gardening; traveling with her husband, Joel, albeit limited by COVID; singing in the choir and participating in other activities at her church, she recently tried her hand at voice lessons. She looks forward to traveling more extensively as the pandemic eases.

Joe Reichle has polycystic kidney disease, like many in his family, several of whom died relatively young. He begins his chapter by explaining that as a young man, he’d always figured that that would be his fate too. Instead, Joe, a retired university professor in the Midwest, led a normal adult life for 30+ years before the word transplant ever surfaced.

When Joe learned that the wait for a deceased donor kidney could be five years, he considered a live-kidney transplant in the hope of getting a kidney before he needed dialysis: a preemptive transplant. Knowing too that a living donation typically has a better outcome, he reluctantly let it be known that he needed a transplant (“I’m a person who doesn’t like to ask for things”). Joe relates in his chapter how surprised and moved he was to see colleagues and former colleagues seek him out, wanting to donate to him.

Many would-be donors were eliminated, and when a former student volunteered but later became pregnant, her husband fortunately volunteered to donate in her stead. Since his transplant, Joe says, despite other health issues, “for the most part, my health has been very good.”

He and his wife enjoy a comparatively quiet life in northwestern Michigan on East Grand Traverse Bay, where they enjoy photographing the wildlife, which includes bald eagles, red foxes, deer, chipmunks, raccoons, and the occasional bobcat.

They are less sedentary, he says, since the arrival of a lively two-year-old weimaraner-lab mix, named Rosie, who enjoys the water. Joe also still “dabbles” in intervention research for children with communication delays.

Even though Joe’s donor, Robert Drager, and family live far away in Pennsylvania, the two families often shared special occasions in the first several years and have stayed in touch.

Nearly 20 years post transplant, Joe has some words of advice to anyone considering a transplant, which he calls “one of the best decisions that I have made. Your quality of life will be significantly enhanced,” he says. And, as for your family, “they will spend less time worrying about you.”

We think those are both awfully good reasons.

For related posts and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

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

Every once in a while, I mindlessly scroll through my website stats to see how a particular blog post or month of posts fared. I was curious when I noticed “Best Views Ever” (in more than three years): November 28, 2020. Hmm, what might that have been, I wondered. Naturally, I had to check it out.

I was delighted–and honestly, not too surprised–to see the title: “Kidney Donors Don’t Get Paid, But the Rewards Are Very Real.” I remember that a lot of living donors told me they’d read it while nodding in agreement, and many people pointed out that even though these things were pretty obvious to donors, transplant centers usually don’t give them enough weight. I just reread the post to see how it holds up nearly two years later. I can defend every word, so I’ve decided to reprint it here (rather than link to it) so it will have today’s date–and not be limited to kidney donors:

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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.

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.

For related posts and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

How’s Your State Doing on Donor Protection Measures?

In my last post I promised information about living donation-related protections and benefits, by state. As I mentioned, while awaiting passage of a federal Living Donor Protection Act, more than half of states now have their own version (28 at last count). In fact, like the one we’re supporting in North Carolina, some actually are more generous than the federal version (by including paid leave for state employees who donate).

United States Map With State Names Pdf Valid Printable Map Of | Printable Map Of The United States Pdf – Printable US Maps

But the LDPA is just one way that states can encourage living donation. Financial supports and job protections are other critical ones. Are you considering being a living donor, or have you donated recently? Do you know what the relevant tax provisions and protections are in your state–or in a state you may be looking at? It’s worth doing your homework.

The National Kidney Foundation has a terrific resource in a map you can click on to find out what donation-related laws and protections a particular state offers. Does it have a Living Donor Protection Act, or similar insurance-discrimination protections? Does it also have job-protected living donor leave for private employees? How about for state employees? What about paid leave? What about tax deductions? Even better, what about tax credits?

The American Kidney Fund website also features an invaluable resource: a state report card. It rates each state based on important donation-related measures and provides an overall rating on how well that state encourages living donation and removes barriers. Not surprisingly, only a few states merit an A: Arkansas, Connecticut, and Louisiana. Glad to see that more than a dozen at least get Bs, but nearly as many have Cs, a few get Ds (including, alas, North Carolina).

Unfortunately, nine states rate an F–that is, these states failed miserably because they have no donation-related measures in place: Alabama, Michigan, Montana, Nevada, New Hampshire, South Dakota, Tennessee, Vermont, and Wyoming.

The tragedy is that none of these donation measures is really controversial–they shouldn’t be so damn hard to pull off. They are simple, reasonable, common sense ways that a state can demonstrate its support for people who help save a life in this way. In fact, not only does encouraging living donation save lives, for kidney patients it reduces costs by reducing the number of people on dialysis (Medicare pays about $90,000 a year per dialysis patient).

With 106,000 people in this country on the national transplant waiting list (most of them needing a kidney), it seems that the very least we can do is remove the barriers to living donation.

For related posts and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.