NC WELD: Time, Passion, and Commitment

Last week was the first local NC WELD (as in Women Encouraging Living Donation) meeting of the year, and I’d looked forward to seeing the Triangle group again. The last meeting, held at my house in May, featured two Duke transplant surgeons. Unfortunately, September’s meeting drew a very small group. We met at the home of executive director Deanna Kerrigan (formerly, Mitchell) and caught up on summer travels and donation advocacy activities (yes, they knew about my National Kidney Foundation Kidney Advocacy Committee approval!) over yummy mini-pizzas and brownies. Most of all, we brainstormed ways to spread the word about living donation and, specifically, the WELD Triangle group, with information packets for prospective donors, flyers at transplant centers, and lots more.

Building a new group in a region takes time, passion, and commitment. WELD will get there one living donor at a time. Happy to be part of the effort! Looking forward to a full house next time.

With Katherine Ramirez and Deanna Kerrigan of Donate Life NC, at the September 2019 WELD meeting.

5 Truths about Becoming a Living Kidney Donor

I just discovered an embarrassing glitch (aka technological error) in this brief post, so I’ve corrected it and reposted.

There are still many myths about what’s involved in donating a kidney, and here are a few. I first included these in an article in 2017 and have already needed to update a couple of them because many aspects of the process have gotten easier. How many of the questions can you answer correctly?

True or False: The surgeon removes a rib to get to the donor’s kidney.

False: Thanks to minimally invasive laparoscopic surgery (the standard of care), I had two tiny slits and a three-inch bikini incision.

True or False: Donors must be young.

False: More than a third of living kidney donors are over 50. It’s the health of the kidney–plus the donor’s overall health–that counts. I was 58 when I donated mine.

True or False: Donors stay in the hospital for a few weeks.

False: A typical stay is now 1 or 2 days.

True or False: Donors need to miss work for 3 to 6 months.

False: I could have gone back to my sedentary job as an editor in 2 or 3 weeks. A laborer might need a couple of months.

True or False: There’s no turning back.

False: You can change your mind at any point. My transplant nurse coordinator, social worker, psychologist, nephrologist, and transplant surgeon all assured me that I could. My son would be told only that I had been eliminated.

This post is drawn (and updated) from an earlier, longer post I wrote for WELD’s blog. The original 2017 article appeared on the National Kidney Foundation website.

Kidney Swaps and Vouchers and Chains, Oh My!

I was delighted to hear from fellow WELD (Women Encouraging Living Donation) member, Michele Hughes, that her son Dan had just had a successful kidney transplant, at New York-Presbyterian/Weill Cornell Medical Center. Like me, Michele had wanted to donate her kidney to her 20-something son with kidney disease. In their case, though, it wasn’t possible. But this is 2019. So, a few months ago, Michele donated her kidney at Vidant Medical Center in Greenville, North Carolina, to a stranger on Dan’s behalf. In return, they received a prized voucher through the National Kidney Registry for a compatible kidney for her son.

A picture of WELD members wearing DONOR tee shirts and holding signs that say "Donate Life." The caption tells where Michele is standing. — Michele is in the front row, third from the left (not counting our littlest WELD member). That’s me, second from the right.

NKR has a huge living-donor pool in the United States; it tries to find the best match for a potential recipient so that if the intended donor isn’t a match for them, they can do a “swap” or even form a kidney chain.

Yes, these amazing options make everything so much easier than it used to be. But anyone whose loved one has had a life-threatening condition knows how stressful and overwhelming navigating the system can be. Fortunately, Michele’s family was closely supported by a knowledgeable friend who’s a living donor himself, Ned Brooks. I recently heard Brooks’s fascinating TED talk, “What Makes a Person Decide to Donate His Kidney to a Stranger?”

In 2015 Brooks, a retired businessman, decided to donate his “spare” kidney to a stranger to set off a chain of three transplants. Like many of us, he found the living-donation experience so uplifting and life changing that he was determined to spread the word. He went so far as to found a nonprofit, Donor to Donor, to publicize the kidney crisis and to encourage and facilitate living kidney donation. In addition to sharing valuable information and donation stories, the organization matches potential kidney recipients with previous kidney donors/advocates who volunteer to help them find a donor.

Congratulations to Michele and her son. Wishing Dan a smooth recovery.

Donor to Donor will sponsor a (free) one-day Volunteer Kidney Donor Advocates Conference April 24, 2020, in New York City. Details to come.

Donate Life Month Fun

As part of National Donate Life Month events, I joined Donate Life NC exec director Deanna Mitchell Sunday at Rush Cycle in Morrisville, NC. In keeping with the month’s theme of Life Is a Beautiful Ride, Rush was offering free cycling classes and gave us a prominent spot to talk about organ donation and share our story of being living donors. I was delighted at the enthusiastic reception and animated conversations with the cyclers (I’d wondered if they’d just ignore us, frankly). See the back of our tee shirts–we’re also proud WELD members: that’s Women Encouraging Living Donation. And check out the photo from our WELD meeting in Durham Tuesday https://tinyurl.com/y2fvbe8x! One of the members had just donated a couple of weeks before!

That’s Deanna above on the right. Besides info, we gave out goodies: protein bites, oranges, dates, sunglasses, trail mix.

International Women’s Day…and Kidneys, of course

March 8 is International Women’s Day, so it seems fitting to continue our theme of women and kidneys (two of my favorite subjects). In my last post, I pointed out that neither gets the respect and attention they/we deserve. It’s mostly because most people just don’t know a whole lot about what they do: in the case of women, we hold up half the sky, as the African proverb says. And kidneys do much the same for the body, quietly keeping it functioning as it should, balancing nutrients, eliminating dangerous toxins, regulating fluids and salt content, promoting bone health. I could go on.

Now how do I tie this back to women, you ask? Let’s consider living kidney donors. Not surprisingly, most are women. When I participated in setting the Guinness World Record for largest gathering of living donors last April, it was clear that the vast majority of us donors there were women. Now, it’s tempting to say that’s all due to our natural empathy and nurturing instincts. I do believe that’s partly responsible, but I know it’s more complicated than that. (For one thing, in the case of the Guinness event in Chicago, many of us needed to be able to afford a trip halfway across the country.) More important, donating a kidney, like any major surgery, usually entails taking off work for at least a couple of weeks, if you have a sedentary job as I did (editor/writer). If you’re a laborer, however, because of a restriction on lifting anything over 10 pounds for about the first 6 weeks after surgery, that obviously could mean a lot longer interruption.

Donors who are lucky enough to have sufficient paid sick leave (or any at all) don’t have to worry about lost pay. But for anyone who doesn’t, that’s a major disincentive to be a live donor. The reality is that, in a lot of families, it’s still harder to get by without the man’s earnings. The National Living Donor Assistance Center has been offering much-needed financial help with travel and lodging costs for donors who need to travel to their recipient’s transplant center. It’s a wonderful program, but it doesn’t cover lost pay. Now there’s a growing movement in Congress, spearheaded by Reps. Jaime Herrera-Beutler and Matthew Cartwright, to expand that assistance to cover lost pay. Contact your representative and tell him or her to get behind this important effort!

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Have you ever heard of WELD (spoiler: it has nothing to do with welding)? It stands for Women Encouraging Living Donation. I’m guessing you’re going to start hearing more about it as this terrific organization grows. I recently went to my first meeting of its fledgling NC site. It was a kick, as always, to meet other women who’ve donated, are in the process of donating, or touched by donation and transplant in some way, whether personally or professionally.

The main WELD group started in 2015 in San Diego. It’s composed of dedicated living kidney donors, transplant recipients, transplant surgeons, nephrologists, nurse coordinators, transplant social workers, volunteer advocates—all women. WELD started as an offshoot of the John Brockington Foundation, founded by John and Diane Brockington. Diane donated her kidney to John, an ex-football star, in 2001, and they later married. Today the Foundation provides financial assistance and education resources to donors and recipients in the San Diego area. Meanwhile, WELD, led by Diane, actively encourages living donation through in-home presentations, one-on-one mentoring, billboards, and support of public events.

I heard about the San Diego organization more than a year ago and was excited to learn that they were exploring branching out. They’ve teamed up with Donate Life, which promotes organ donation (after death). Deceased donation alone can’t meet the need for organs—nearly 100,000 Americans are on waiting lists for a kidney, for example, and only about 20,000 transplants are performed each year. So, WELD—and other groups promoting living donation—hope to bridge that gap. I’m so happy to be a part of their efforts.