Spotlight on Our Contributors

In the coming weeks, periodically I’ll be introducing a few of the wonderful contributors to our book, The Insider’s Guide to Living Kidney Donation. They candidly and often movingly shared their experiences and their insights with our readers.

I already knew from personal experience and Facebook support groups that relationships both before and well after donation are fraught with complicated emotions that sometimes surface in unexpected ways. In our research Betsy and I noticed that family issues come up repeatedly even when donor and recipient are not related.

Considering its outsize impact on the donation and transplant experience, the subject of family dynamics typically gets insufficient attention. So we decided to devote a whole section of the book to this important topic. Donors and potential donors and recipients alike will be able to relate to many of the contributors’ diverse situations.

You may know that siblings enjoy the best chance of being a so-called “perfect match” (I have to keep remembering that the only true perfect matches are between identical twins): a 1 in 4 chance of matching on 6 out of 6 antigens. Sibling donor-recipient pairs are likely to have a particularly large impact on the whole family plus the extended family.

In the case of contributors Mike Collins and his sister Wendy Withers, the relationship was and remains especially close.

Wendy had had kidney disease most of her life and recalls “not knowing what it felt like to feel good.” She was raising her two young children alone after she and her husband separated when she learned that her kidneys were suddenly failing. Three of her siblings tested and qualified to be her donor, but her big brother Mike aced it: 6 out of 6.

He had a fledgling business and young family in North Carolina, but when the time came he and his wife, Mimi, and kids flew out to Texas so he could donate. They all shared a big farmhouse with two of his sisters and their families–with their parents nearby–while they waited out a series of frustrating delays.

Some 25 years later Wendy feels “great” and enjoys a very full personal and professional life. She remarried and enjoys time with her grandkids. She’s the Town Administrator for Shady Shores, Texas, which is in the midst of a major project, constructing “a fiber backbone that will connect all the government facilities for the four Lake Cities, to be able to offer high-speed Internet to all of our residents. Many areas are currently underserved.”

Mike, whose donor surgery was done back in pre-laparoscopy days (think 12-inch incision), also leads a very full life. He’s healthy and active, enjoying tandem bike rides several times a week with Mimi. His business, aptly named Tandem Translations, has grown. He translates technical materials into English from a jaw-dropping list of languages: German, Russian, French, Italian, Dutch, Spanish, Serbian, and Croatian.

Even though Mike and Wendy still live in different regions of the country, their families spend as much time together as possible. Check out their complete stories in the book.

A Right to Refuse?

A letter writer in The New York Times Ethicist column this week raises an interesting question: “Must I Donate a Kidney to My Awful Brother?” (Spoiler alert: I’m not going to tell you how the Ethicist answers.)

If you believe that blood is thicker than water in every case, then maybe the answer seems crystal clear, but I think it’s an intriguing ethical dilemma.

Background: Nearly 100,000 people in the United States are waiting–usually for several years–for a kidney from a deceased donor. Finding a living donor helps shorten that wait and saves lives. For me and for thousands of others, being a living kidney donor is a powerful, positive experience, but it’s a big deal.

First of all, before making a big decision like this, you should of course be well informed.

Then you need to consider all the personal issues. If you believe as I do that donating a bodily organ is an intensely personal decision (as much as I value living donation, I would never judge someone who has an open mind and chooses not to donate), it’s still difficult to land squarely on one side or the other of the question to the Ethicist.

Ultimately, anyone considering donating a kidney (or part of a liver) to anyone should carefully think about how they will feel about their decision whatever happens down the road–to the donor or the recipient.

In this particular case, for example, what if the brother continues to be a jerk to the donor? What if he doesn’t take proper care of the gifted kidney? What if the brothers never see each other again? The answers to these questions might or might not be a factor in your decision.

I remember interviewing a donor who admitted that she’d hesitated to donate her kidney to her brother with diabetes because he had long been irresponsible in caring for his condition and his general health. She went ahead with the donation anyway because she’d concluded that the decision felt right for her personally–whatever happened. She never regretted it. Interestingly, her brother turned out to be a very responsible steward of her kidney, but it was certainly wise of her to consider how she would feel if that were not the case.

I know of people who’ve donated to their ex-, other donors who later broke up with their girlfriend/recipient, people who lost touch with their recipient–and yes, even some donors who later developed health problems. In other words, not every donation situation is as straightforward as donating to a beloved spouse or son with a happy outcome like mine.

So do read the Ethicist exchange, and then think it over. Please let me know what you think.

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

CrowdSource for Life Itself

Most living donors, like me, didn’t know the first thing about donating before it touched their family, their friends, or learned of a stranger’s need and felt compelled to help. The ultimate purpose of this website, my book, and my advocacy, obviously, is to raise awareness of living kidney donation by sharing basic information and personal experiences.

Recently Betsy and I were interviewed on the “Donor Diaries” Podcast (episode 8). The podcast’s goal too is to raise awareness, and it also has a related, ambitious way to do that.

Donor Diaries host Laurie Lee, who is a nondirected donor (that is, she gave her kidney to an unknown recipient), is part of the Maitri River Productions team. The team is raising funds to produce a PBS documentary on nondirected donors. (Psychologist Abigail Marsh, who studies altruism, calls such donors “extreme altruists.”)

CrowdSource for Life is the title of the fascinating one-hour television special about nondirected donors to air on PBS member stations. It features memorable first-person storytelling by the donors themselves, describing their various paths to donation.

The team has already raised an impressive $226,000 but needs a total of $350,000 to meet its production budget goal. Financial donations to CrowdSource for Life are deductible as charitable contributions.

Whether or not you can make a financial contribution, you can contribute to CrowdSource for Life–and living donation–by simply spreading the word with this post.