A Time to Celebrate

I think it’s only fair to warn you that this short post has absolutely nothing to do with kidneys, organ donation, or advocacy. But today is a special day, and attention must be paid. Today, amazingly, marks 50 years since my husband and I got married on a rainy Friday night in New York City. Months ago, when we were searching for special ways to celebrate this special wedding anniversary, we considered (1) throwing a party; (2) renewing our marriage vows; (3) planning a trip to Tahiti, which we’d considered for our 10th anniversary but couldn’t afford; (4) staying at New York’s Plaza Hotel, as we did on our wedding night; (5) splurging on a photographic safari to Botswana, which we actually did book for September but will almost definitely reschedule for a year later…and well, we were still dreaming up fun ways when covid turned the world—and our priorities–upside down.

So, instead, we’ll open a nice bottle of wine, maybe put on a Jacques Brel CD (we recited the lyrics to “Quand On N’a Que l’Amour—If We Only Have Love—at our wedding), and probably enjoy a special take-out meal. And we will make a toast to celebrate how incredibly fortunate we are, in the midst of all this suffering, sorrow, and shared outrage. (Thanks for indulging me.)

Hmm, maybe this topic does have something to do with kidneys, organ donation, and advocacy after all!

Does Your State Offer Paid Leave to Donors?

In the course of updating our book manuscript on living kidney donation, we were hoping to see lots of progress in job protections and financial assistance–such as paid leave laws and tax deductions/credits–for living donors. Well, the good news is that there has been some progress. More states are offering paid leave and tax benefits for donors’ unreimbursed costs for travel, lodging, lost wages, and so on. The bad news? You guessed it—not nearly enough.

Photo by Pixabay on Pexels.com

First the good news:

Job protections. Living donation is now eligible for unpaid leave and other protections under the Family and Medical Leave Act–so your job or equivalent has to be waiting for your on your return. Federal employees and most states grant such protections in the form of leave (paid or unpaid).

Paid leave: All federal employees receive at least 30 days paid leave for organ donation; most states offer paid leave of various lengths to their state employees. A few states (let’s give them a shout-out: California, Hawaii, Louisiana, and Minnesota) require private employers to provide paid leave for living donors. A few more (Arkansas, District of Columbia, and West Virginia) offer incentives to encourage private employers to do so.

Tax credits: Four states provide tax credits (that is, dollar for dollar) for unreimbursed expenses by living donors (shout-out: Idaho, Louisiana, Maryland, and Utah).

Tax deductions: About half of the states offer significant tax deductions.

The bad news: What about all the others? Why aren’t all states offering paid leave to their employees and providing incentives to private employers to offer paid leave? It’s the right thing to do and actually saves money compared with the costs of kidney patients’ staying on dialysis. Why aren’t the rest of the states with a tax code at least offering tax deductions? And why aren’t those with tax deductions offering tax credits instead?

If you’re considering donating, find out what the law is in your state before you talk to your employer. Be sure to get all relevant details, because there are frequently requirements about how many hours a week you work or how many people a company employs in order to qualify. In any case, call or email your state representatives and tell them to do the right thing. Don’t let them merely pay lip service to supporting living donation–living donors deserve every state’s concrete support.

Contact me for a state-by-state list of donor leave laws and tax regulations compiled by the National Kidney Foundation.

Preparing The Greatest Gift

My co-author, Betsy Crais, and I have been busy making revisions and updates to our book manuscript (The Greatest Gift: The Insider’s Guide to Living Kidney Donation). With the pandemic necessarily dominating the news and publishing world, this seemed like a good time to concentrate on honing our manuscript rather than sending out proposals. As we prepare the final chapters, we’re noticing some key trends since we started working on it 5+ years ago (back when we were both working full time and unable to devote much time to it):

Social media is playing a bigger and bigger role in kidney patients’ search for donors. I get requests every week to “like” a page to help someone find a donor. The National Kidney Foundation’s Big Ask/Big Give workshops, which Betsy and I have addressed in Chapel Hill and Raleigh, NC, encourage and train kidney patients and their families and friends in how to get the word out that way.

Potential donors are learning that they don’t have to be related to their recipient. Perhaps because of the social media involvement, more nonfamily members are volunteering to donate to a friend, neighbor, or colleague. Antirejection meds have come so far that, though well-matched pairs still offer the best chance of long survival, the so-called “perfect match” is far from being a requirement for a kidney transplant.

Paired donation (aka “kidney swaps”) have really taken off. Let’s say, you want to donate to Alice but you’re not a match; maybe Jane, who wanted to donate to Bill but couldn’t, can donate to Alice and you can donate to Bill. Computer formulas and kidney registeries make it all possible. In 2006, when I donated to my son, paired donation wasn’t even on our radar, and no wonder: there were only 72 such transplants in the United States that year. In 2019, there were 1,118! It doubled just in the past 5 years.

Nondirected donors are playing a bigger role. These rare individuals (a few hundred each year in the United States) make the selfless decision to donate to someone they don’t know–and may never meet. Sometimes their donation can initiate a domino chain of kidney transplants across several transplant centers.

Photo by Pixabay on Pexels.com

As we start to wrap up The Greatest Gift, I may post a few samples here from time to time.

New Record: 84-year-old Living Kidney Donor

I hope everyone knows that no one is too old in principle to be an organ donor when they die. And that’s becoming truer of living donors, too. When I donated my kidney to my son 13 years ago I was 58, which is hardly ancient (actually, it seems downright young to me now!) but seemed “old” at the time. Now, more than a third of donors are over 50. Donors in their 60s are increasingly common, and I’ve known of many people who donated in their 70s. The common wisdom has always been, it’s not the donor’s age that matters but the kidney’s health and the donor’s overall health. So I’m happy to say that the record for oldest living kidney donor was set recently when an 84-year-old man in Texas kindly donated his kidney to his neighbor. Admittedly, it wouldn’t have been a great option for most 30-year-olds, but it was a perfect gift for his grateful 72-year-old recipient with lupus. Read more in this very touching and informative story.

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.

Keep reading!

This post is excerpted from an article I wrote for the Fall 2018 issue of South Writ Large, a quarterly online magazine published since 2007. The theme of the issue was sharing resources, so living kidney donation was a natural fit.

Living Donor Rally

You’ve already heard (and seen pix) about the living donor rally I attended this weekend in Chicago. But I’ve been eager to share some observations while they’re still fresh because it was truly the most encouraging, life-affirming experience I’ve had in years.

For 3 wonderful days I was surrounded by hundreds of people–on Saturday more than 1200–I’d never met before, but with whom I felt an incredible bond. We were from all different parts of the country (a few from Canada and one family from India), backgrounds, ethnicities, ages (many 20-30 yrs younger than me), genders, and political views. I’m guessing about the last one because politics NEVER came up. Yup, for 3 days politics did not come up–I don’t mean I avoided it, I mean it just didn’t come up, it was irrelevant.

We laughed together, teared up a lot (for both sad and happy reasons), and connected on the most basic human level. We shared our stories and nodded knowingly on hearing others’ experiences (often if we hadn’t lived it, we had worried or wondered about such things): a young woman who’d donated to her father a few yrs ago was grieving for the kidney he had lost a month before, a mother from Texas donated to her son who was on dialysis when the power was out for days during a hurricane and she lived in terror of the generator going out. There were happy tears on hearing of people who’d donated to someone from their church whom they’d barely known and now get invited to every graduation, wedding, and baby shower–a warm acknowledgment that if it wasn’t for the donors, the recipients might not have been around for these special family events. I met altruistic donors (who donate to an unknown recipient)–many were thrilled to meet their recipient and were welcomed as part of the family, some had never met even years later, one wished they hadn’t met–but all continued to be tireless champions of living donation.

I heard it repeatedly: we felt like we were among family or old friends. A sense of community that transcends demographics, politics, religion, sexual orientation–if you thought it was no longer possible in 2018, I’m happy to report that it was very much alive and well in Chicago this weekend. True, it was a very special gathering, but now I know that it is indeed possible. May you all experience it sometime soon. It’s a helluva feeling!

This post appeared on my Facebook page, April 27, 2018.

 

Living Donors Rally, April 21, 2018, in Chicago–we set a Guinness World Record for largest gathering of living donors! Can you see me?
Photo by John Martin Photography, Detroit.