Who Are We (Living Donors)?

Several months ago, I wrote here about co-writing a Patients’ Foreword for a medical textbook, Living Kidney Donation: Best Practices in Evaluation, Care and Follow-up. The following excerpt from the foreword, addressing transplant professionals, describes us living donors simply and honestly:

Who are we? We’re loved ones: mothers and fathers, wives and husbands and partners, daughters and sons, sisters and brothers. We’re also caring friends, neighbors, and members of your community. And some of us are just average, empathetic people who simply saw a need—even in someone we don’t know—and wanted to help.

What we’re not are saints, super-heroes, or natural risk takers. Thanks for the praise, but that’s not what it’s all about. Please don’t perpetuate the idea that someone needs to be superhuman to step up to save a life by undergoing a comparatively low-risk surgery. That attitude may intimidate some potential living donors.

Bravery has little to do with it. Personally, I’m a wimp: I faint at flu shots. But when my adult son’s kidneys were failing, and I was the only healthy family member with a compatible blood type to come forward for donor evaluation, I ultimately donated to him in 2006 (paired donation was in its infancy in those days). My son didn’t have any risk factors for kidney disease, and we had no family history; all he had was a strep infection that caused his IgA nephropathy. We want people to understand that what happened to our families can happen to any family. . . .

A Third Shot Could Be the Charm

We suspected—and, of course, feared–that my kidney recipient son’s two COVID vaccine doses hadn’t worked, as is the case for most immuno-compromised individuals. Then he had an anti-spike test, which specifically shows whether a person has developed antibodies in response to a COVID vaccine. His results were negative: he had no antibodies.

So we’ve been watching with even greater interest for news of developments on protections not only for him and other organ recipients–but for all immuno-compromised individuals, such as people with cancer or HIV.

A small, recent study of transplant recipients in France found that though only 4% of the participants had some level of antibodies four weeks after one shot of a (two-dose) COVID vaccine, 40% had antibodies after the second shot, and 68% after a third shot. For those who had no antibodies weeks after the second dose, such as in my son’s situation, 44% did after a third dose. That was encouraging news.

In fact, both France and Israel have started offering an extra shot to organ recipients and anyone with a weakened immune system. I was excited to learn that the Centers for Disease Control and Prevention is seriously considering doing the same here in the United States. They may be waiting for more studies before taking that step. The transplant community and the public need to urge the federal government to recognize the importance of these additional shots for organ recipients and other vulnerable individuals.

In the meantime, the CDC has just recommended that even fully vaccinated people go back to wearing masks indoors in some public spaces because of the delta variant’s increased potential to spread the virus. Makes sense to me. Wearing a mask isn’t the worst thing in the world.

For more information on this and related subjects (and to learn more about my upcoming book, The Insider’s Guide to Living Kidney Donation), please explore the blog archives and the rest of my website at kidneydonorhelp.com

“Insider’s Guide to Living Kidney Donation”: Take a Peek Inside

As we get so much closer to publication, we’re eager to share another peek at the book. Here’s an excerpt: the opening for chapter 1!

AN OHIO COUPLE transform their van into a cruising billboard, a woman in Pennsylvania posts her blood type on Facebook, a man offers thousands of dollars online . . . These are just a few of the ways people try to find living kidney donors in this country.

Why resort to such unusual steps? The answer is simple. Today more than thirty million Americans have chronic kidney disease. Nearly 100,000 of them are on national waiting lists for a kidney from a deceased donor. About every ten minutes another person is added to the list. Meanwhile, nearly half a million people, many of whom may never be able to have a transplant, receive dialysis.

With fewer than 25,000 kidney transplants performed each year—from both deceased and living donors—most of the people on the list wait several years for a kidney: up to five to ten years in some states. That means that at least sixteen people in the United States die every single day simply because they did not receive a kidney in time.

It doesn’t have to be this way. Kidney transplants are hardly new—surgeons have been performing them for more than half a century. So why are they still helping only a fraction of those in need?

No Simple Answers

The principal reason for the long wait and the tragic deaths that result is obviously a shortage of available kidneys. But numerous factors account for that shortage. In the United States, only about 3 out of every 1,000 people die in a way that makes traditional organ donation possible— typically in a hospital following an accident— so the pool is very small. . . .

For more information about The Insider’s Guide to Living Kidney Donation–and about donation, transplants, and kidney disease–be sure to check out the website and blog archives. And, of course, sign up to be notified when you can pre-order the book.

We Need the LDPA: Best-Case Scenario Is Hardly Good Enough

The Living Donor Protection Act (LDPA) of 2021 was first introduced in Congress back in 2014 and has been making its way through successive congressional sessions ever since. The act would protect healthy living donors like me from discrimination by insurers (including rejections and higher premiums) and would protect the job of an employee who takes time off work to save a life. In the meantime, several states have tried to adopt their own, often improving on the federal version.

My state, North Carolina, has been considering passing an LDPA for a few years, and this is the closest we’ve ever gotten. The bill has made it through two committees–health and finance–and the insurance committee is next to take a closer look. It includes not only protections against discrimination by insurance companies but also provides paid leave for state employees (I used to be one!) and tax credits.

Last month, when my National Kidney Foundation liaison asked me to testify or send a letter of support to the Finance Committee, I hesitated because my experience was not a dramatic story of financial ruin or loss of coverage. But on further reflection, I thought that mine might be worth describing precisely because it was so banal. I decided to write a letter sharing my story so that legislators might better understand what a “best-case scenario” looks like.

Here’s what I wrote:

With roughly 3,000 people in North Carolina waiting for a kidney from a deceased donor—most of them wait several years—living donors hold the key to reducing the tragic kidney shortage. Fifteen years ago this month I donated my kidney to my adult son. I would do it again in a heartbeat, because he’s my child. If we want to encourage and support people with less personal motivation to donate—friends, neighbors, colleagues, faith-community members—we need to start by eliminating the many disincentives.

My family was fortunate to live close to one another and near the UNC transplant center. Many people live hours from a center and have to devote a full day going to appointments or visiting at the hospital. I had a smooth recovery and could have gone back to work in 2 or 3 weeks if it were just a matter of my own health. But like so many other living donors, my recipient was a family member, so I was also a caregiver. My family was devastated when our son needed emergency surgery a week after his transplant. His recovery was slow, and he lived with us for about 2 months. I missed work for much of that time.

My husband and I shared family responsibilities that included our other child–a teenager with her own adolescent needs–and my elderly father, whom we had moved down to our town. We both maxed out our paid leave time. With my job, again I was fortunate: I had a supportive supervisor, short-term disability leave, and an employer with a shared-leave policy that enabled my kind colleagues to donate their leave time. I cobbled together partial coverage. My husband did not have the benefit of shared leave donations. Not many potential living donors have such luxuries. In fact, many of the people on the transplant lists have low incomes, and many of their families and friends have little ability to ride out periods of missed pay. So these patients languish on the wait lists still longer.

Personally, I was never discriminated against for life insurance, but I know healthy donors who have been turned down by multiple companies or have seen their rates go up.

My son was very lucky to have a live donor. If I hadn’t been able to donate to him after he’d spent nearly 2 long years on dialysis, he could have faced another 5 years tethered to a machine 3 times a week, draining his energy, his time, and his spirit. Incidentally, you may not know that the 5-year survival rate on dialysis is only a little more than a third.

My family’s story is what a best-case scenario looks like. At an extremely difficult time for our family, we at least had everything going for us: our location, adequate resources, and a supportive employer. I implore you to help someone else’s son avoid that long, dangerous wait for a donor by doing whatever you can to protect living donors and remove disincentives for donation: please support and expand the NC Living Donor Protection Act.

If your state is looking at such a bill, consider similarly telling your story–whether you’re a living donor or a family member.

For more information on this and related subjects (and to learn more about my upcoming book), please explore the blog archives and the rest of my website at kidneydonorhelp.com