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.

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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.

New Year’s Resolutions for Donors and Would-Be Donors

Whether you’re being evaluated as a living donor already, or just thinking about it, here are a few suggestions that will benefit you and your kidneys–wherever they happen to be.

1- Take good care of yourself (and your kidneys).

–Exercise regularly.

–Get plenty of rest.

–Stay hydrated.

–Eat a healthy diet.

2-For your safety and your recipient’s, be sure to get your Covid booster as soon as you’re eligible. Transplant recipients and anyone else who is immunocompromised, such as people with cancer or autoimmune diseases, can’t count on full protection from the vaccine. It’s all the more important that the rest of us add that protection.

3-Avoid ibuprofen and other NSAIDs—they’re hard on the kidneys for anyone—particularly important if you’re a donor or recipient.

4-Learn about kidney function. Kidneys are amazing!

5-Read up on all facets of kidney donation—for example, order a copy of The Insider’s Guide to Living Kidney Donation.

To all of you and your loved ones: a happy and healthy new year!

Vaccines to Protect That Precious Gift

Anyone who has so much as glanced at my blog posts knows that I support getting COVID vaccines. Period. Obviously for transplant recipients and others with a weakened immune system like my son, who has no COVID antibodies even after a third shot; obviously for everyone around them (including living donors, of course)—family, friends, neighbors, and people they have yet to meet. Like I said: period (with very very rare medical exceptions).

Photo by Nataliya Vaitkevich on Pexels.com

I would have thought it was a no-brainer that anyone about to either give or receive a precious kidney would be all the more eager to have every protection possible. Like everything else, though, apparently there are exceptions.

Maybe you’ve read that a few U.S. transplant centers have instituted rules requiring COVID vaccines for both parties before a transplant can proceed. Considering that other important health screenings and protections are required, that sounded reasonable to me. However, the Washington Post published an article recently about situations in which an about-to-be living donor—ready to undergo surgery, entailing drugs during and after— had balked at the idea of receiving a COVID vaccine that has proven to be safe and effective at preventing COVID-related severe illness and hospitalization.

To be clear, not only is an organ recipient more vulnerable to catching COVID because of needing to take antirejection meds, but if they do catch it, they have a higher risk of developing severe, even fatal, complications. So, understandably, doctors don’t want to increase a transplant patient’s risks.

The transplant described in the article had to be cancelled days before it was scheduled, and the poor patient who’d been counting the days until he received his new kidney had to restart the search for a living donor (and fortunately found one).

But the article also similarly described potential recipients who’d refused the shot, which I found even more baffling. Why would someone who’s been on dialysis for years and gets a chance at a longer and better-quality life refuse a transplant because of the vaccine requirement? (Read the article if you want to know her reasons.)

I just don’t get it.

Why Not Just Wait for a Deceased Donor? Here’s Why

According to polls, about 90% of Americans say they favor organ donation, but only about 60% are registered donors.

Just curious: what percentage of people in the United States would you guess die in such a way that traditional organ donation is possible? A third? A fifth? Not even close. The answer is “less than 1%”: typically in a hospital following an accident. So, no, not at home in their beds, not on impact in a car crash, often not even after a slow death from myriad diseases.

Traditional organ donation 101: When a dying person has been determined to be brain dead—no activity, no chance of survival—but the heart is still beating, blood is flowing to their internal organs. Once the organ has been removed from the blood supply, the sooner it’s placed in the recipient’s body, the better. With luck it’s off the blood supply for only a few minutes or hours. When it’s necessary to put it on an airplane, that interruption may last several hours—technically, 24 to 36 hours is acceptable, but the sooner it can be hooked up to the recipient’s veins, the better.

So most of the 100,000 people on the national waiting lists may languish several years (5 to 10 is not uncommon) before they receive a lifesaving kidney, and thousands don’t get one in time. Clearly we need more people to be registered donors.

So, absolutely, register to be an organ and tissue donor after you die and tell your family of your desire (and then urge them to do the same). But even if everyone complied, we’d still have a kidney shortage because of that 99% that can’t be used in traditional donation.

That’s where live donation comes in. Not only does it add to the pool and shorten the wait, it even improves the outcome for most transplant recipients. And we need to remove obstacles for potential donors so that more people will consider being living donors. Tell your representatives–in your state and nationally–to support the Living Donor Protection Act and to increase funds for financial assistance for living donors and for early detection of chronic kidney disease.

An important health crisis as urgent and daunting as an organ shortage deserves more attention, more funding, and a meaningful commitment to finding creative solutions.

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.

Relax, Living Donors: Your Kidney Function Is Probably Just Fine

Anyone who’s been reading this blog for awhile knows that I periodically post in frustration about the subject of donors being needlessly upset when their kidney function appears slightly lower than “normal.” It’s usually because their provider has wrongly concluded that the donor thus has stage 2 or 3 chronic kidney disease. That’s not merely my opinion–I have no medical credentials–that’s according to respected medical writings on the subject.

The eGFR (kidney function) scale they’re referencing is relevant mainly for people with two kidneys who may be showing signs of kidney disease.Well-meaning but uninformed providers–sometimes even nephrologists (kidney specialists)–often forget that a healthy donor is probably registering lower kidney function simply because he or she has one kidney.

Donors do lose kidney function, but the remaining kidney gets plumper and takes on some of that burden; their creatinine level (toxins in the blood) may be borderline for a few months but then typically stabilizes at a perfectly acceptable level. Mine, for example, 15 years after donation, is fine even for someone with two kidneys.

I recently heard of other examples of confusion on this point, so it bears repeating: a slightly higher creatinine and a slightly lower kidney function in an otherwise healthy living donor is just fine!

Transplant teams need to do a better job of preparing their donors for the likelihood of their having a “new normal.” Equally important, teams should routinely alert a donor’s PCP to this eventuality from the start–that is, when the donor leaves the team’s care soon after the donation.

Some frightened donors have run to consult a nephrologist, worried that they had developed chronic kidney disease. (I’m not suggesting that there are never instances of a living donor developing kidney disease, but those are rare. We’re talking here about a donor who is in good health and showing no signs of kidney disease.)

In Facebook support groups, even well-informed donors often describe having had to get a letter from the transplant team to “convince” their provider that the donor knew what he or she was talking about.

If even health care providers are not fully informed, is it any wonder that donors–not to mention the general public–are not fully informed about living donation? Given the urgent need for more living donors, our health care system and the kidney community need to do a better job of raising awareness about kidney disease and donation.

Photo by Pixabay on Pexels.com

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.

Save $$ and Spread the Word

I’m always appreciative when people spread the word about this website and related issues that are important to me: organ donation, living kidney donation, chronic kidney disease, and, most recently, our book, The Insider’s Guide to Living Kidney Donation. There are lots of ways you can do that.

#1. Whether you buy the book on Amazon or any other site (see below), please consider posting a review of the book on Amazon.

#2. This week only, click here to get 30% off the price of the paperback! Use promotion code KIDNEY (okay, so it’s not very original, but it IS easy to remember, right?) at checkout.

#3. Share all this information and the links on your social media posts, and, of course with friends and family.

A Third Shot Wasn’t the Charm

In August, I excitedly wrote about my (kidney recipient) adult son getting his booster shot, with important reminders for organ recipients. It was great news to get that third shot at protection because, like so many other people with suppressed immune systems, his body had not made any antibodies from the first two shots. His immune system, tamped down to coexist with his gifted kidney, didn’t react to the vaccine the way it does for people with strong immune systems.

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So naturally he was realistic but still hopeful that the third one might do the trick. “Fingers crossed,” I wrote. He was told to wait a month or so before getting the spike protein antibody test to check, which he did recently.

Alas, though we were not surprised, our family was really disappointed to learn that his immune system hadn’t responded to the third one either. Fortunately, the body still has other ways, like memory T cells, to protect it from infections like COVID, but we have no way to know how much protection they’re providing.

So, until this is all over–and I know I’ve said this many times before–my son’s best hope of avoiding COVID and staying healthy is for everyone to get vaccinated and wear masks as needed! It’s not only for the protection of my son and other organ recipients, but for the millions of people with weakened immune systems from HIV, cancer, auto-immune diseases, and certain treatments.

Don’t we all want this to be over as soon as possible? Doing our best to protect one another is really the only way.

#3, Thanks to You!

Two years ago this month I happily reported that “Could You Be a Kidney Donor?” was #10 on the Top 30 Kidney Donor Blogs website. My blog has stayed in the top 10 ever since and has even inched up the chart. Well, now I’m thrilled to see that it has made it all the way to number 3! Numbers 1 and 2 are both affiliated with big-league players–National Kidney Foundation and the Kidney Foundation of Canada, respectively–so I’m particularly pleased to be the first for individual blogs.

Photo by Jill Burrow on Pexels.com

Thank you for putting us up there. Please follow the blog, explore the rest of the website for resources and related information–and spread the word! And, of course, be sure to check out my new book, The Insider’s Guide to Living Kidney Donation.

Why Does Everybody Want a Live Donor?

Like many living donors and donation advocates, I get frequent Facebook requests to “like” a page for someone looking for a kidney–that is, for a living kidney donor. If you’ve only recently heard of such things in passing–perhaps a friend of a friend or someone at work–you may wonder what the fuss is all about. Last year I wrote a post explaining why there’s such an emphasis on finding a live donor.

Photo by Julia Larson on Pexels.com

Here’s an additional benefit that’s implicit, but I’ll admit I hadn’t realized it at first: every time someone on the U.S. list (roughly 100,000 people) finds a living donor, they’re removed from the list, which obviously then gets shorter. In other words, everyone benefits, not just the intended recipient. And if it’s part of a paired donation–that is, a kidney swap–or even a chain, then multiple lives are saved.

None of these exciting options were available when my son’s kidneys were failing back in 2004, so we’ve certainly seen dramatic progress. But there’s still a long way to go to meet the critical need.

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.