More New Year’s Resolutions

Every year before I make new new year’s resolutions, I try to look back to see how I did on last year’s. Alas, they’re almost always still relevant. I don’t think I’m unusual in that respect. I know that starting next week, for example, my Zumba classes and the workout area of my gym are going to be jammed. I used to be concerned but soon saw that in a matter of weeks, the crowds invariably start to thin, and by late February they’re always back to near-usual levels.

So, I thought I’d dust off my old new year’s resolution blog post and share these again. They’re relevant for everyone–if you’re a donor or never plan to be one.

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 future recipient’s, be sure to get the latest 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 vaccines. 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!

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

Myths about Living Donors Do a Disservice to Everyone

Anyone who’s even casually perused this website or read many of my posts knows that I’m not brave and I’m not a risk taker–nor am I remotely athletic or even especially selfless. A lot of people think that living donors are many if not all of those things.

One of the reasons I launched this website, in fact, was because I realized that my story of donating to my son is more relatable than most: we had no family history of chronic kidney disease and no risk factors. And surely there was nothing on my part that would have suggested a propensity for becoming a living donor. When I tell my story to lawmakers or legislative staffers, I often conclude by saying sincerely “what happened to my family can happen to any family.”

So, in addition to writing about it here–and of course, in our book, The Insider’s Guide to Living Kidney Donation–sometimes I write about living donation on Medium (I write about other things too!). That is, I’m looking for an audience that might not have a connection to kidney disease, donation, or transplant. I want to remove the veil and help people see that most living kidney donors are average people. Please check out my latest article.

Photo by Jamie Street on Unsplash

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

Another Donate Life Month Quiz

At the end of this special month, I came across a brief Donate Life Month Quiz I posted a few years back. Happy to see that it’s still accurate. I thought I’d add a few updates:

1–To be a living kidney donor, you have to be (a) young, (b) a family member of the recipient, (c) brave, (d) all of the above, or (e) none of the above?

(a) Wrong. I was 58. In fact, more than a third of living donors are over 50.

(b) Wrong. Though the largest group of donors are indeed family members, unrelated donors are an increasingly large portion of living donors.

(c) Wrong. “Brave” is certainly not a word ever used to describe me! As a self-described wimp, I relied heavily on my supportive and caring transplant team, who did all they could to accommodate my needs and concerns. The experience proved to be much easier than I expected (certainly easier than childbirth!).

(d) Wrong.

(e) Bingo! Happily, none of the above.

2–To qualify for financial assistance from the National Living Donor Assistance Center, (a) a donor has to be related to the recipient, (b) you can’t be a nondirected (aka altruistic) donor, and (c) you and your recipient must be U.S. citizens.
All false. If you’re not U.S. citizens, however, both recipient and donor must be “lawfully present residents.” As I explained in my last post, NLDAC has greatly expanded its assistance for living donors, and more people qualify than ever before. Be sure to check out the guidelines.

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.

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.

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!

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.

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.

Living Donor Registry and At-Home Test for Donors

Thinking about becoming a living kidney donor but wonder where to start? Maybe you know someone who needs a kidney and don’t know if you’d be a match. Wondering if there’s a central way nationally to register your interest and be guided through the process? Surely there oughta be, but there really isn’t, although kidney registries perform some of that function (see Resources). That may be about to change.

Last week we heard about some exciting developments for both the nearly 100,000 kidney patients waiting for a transplant and people who want to start the process of becoming a living donor. Donate Life America and Fresenius Medical Care Foundation announced that they were teaming up to launch the first-ever national, universal registry of potential living kidney donors and to pilot a simple, at-home saliva-sample test for donors.

Did you know that little more than 20,000 kidney transplants happen in this country in a year (about two-thirds of them have a deceased donor)? That’s not much, and clearly, it’s not enough. There simply aren’t enough eligible deceased donors alone to fill the urgent need. Some patients languish on the waiting lists for 5 to 10 years. For many thousands of them, that’s dangerously long. As a result, each day about 16 people die in this country because they didn’t get a life-saving kidney in time. Every day.

Donate Life is better known for its important work in promoting deceased organ, eye, and tissue donation through the national organization and affiliated state programs. In recent years though, with the pressing need for transplants, it’s expanded its mission into living donation. In North Carolina, for example, I’m a proud member of my local Donate Life NC WELD (Women Encouraging Living Donation) branch and have written a few posts about it–see one example.

If the name Fresenius looks familiar, you probably know it as the huge private dialysis provider. But this is its separately operated nonprofit. The registry is scheduled to be up and running in spring 2020, and not many details have been released. The at-home tests, though, are supposed to be piloted in a few transplant centers between now and February 2020.

Periodically, there’s an outpouring of interest in kidney donation in response to an individual’s publicized need of a kidney. A family member walks around town wearing a sandwich-board or buys space on a billboard to spread their plea. Only some of the people who reach out get tested, and only one becomes the donor. More often than not, those other potential donors just vanish and with them the chance of saving another life. With the exception of some limited experiments, there has been no way to register these people and to capture and direct that interest.

To patients in kidney failure and donation advocates, that lack of direction is a particularly tragic waste of potential. This registry just might make all the difference.

A Donate Life Month Quiz

To be a living kidney donor, you have to be (a) young, (b) a family member of the recipient, (c) brave, (d) all of the above, or (e) none of the above?

(a) Wrong. I was 58. In fact, more than a third of living donors are over 50.

(b) Wrong. Though the largest group of donors are indeed family members, unrelated donors are an increasingly large portion of living donors.

(d) Wrong.

(e) Bingo! Happily, none of the above.

April Is National Donate Life Month!

Whether you’re a living kidney donor (like me) or a registered organ donor with a little heart on your driver’s license (also like me), thank you for giving someone a chance at a healthy life! As you may know, more than 100,000 people in this country are on years-long waiting lists for an organ (most of them in need of a kidney). Registering to be an organ donor is easy and quick: just go to http://organdonor.gov, and then be sure to tell your family of your wishes. National Donate Life Month shines a spotlight on organ donation in the hopes of shortening the long wait for a life-saving organ.

So many people can be saved from just one registered donor with two kidneys, a liver, two lungs, a heart, a pancreas, and intestines–and, since 2014, even hands and faces. However, even if everyone registered, there just aren’t enough deceased-donor organs to go around. Did you know that less than 1% of people die in such a way that their organs can be used (typically in a hospital following an accident), though, fortunately, corneas, tissues, blood stem cells, and bone marrow can still be used? That’s why it’s so important to have as large a pool of potential donors as possible.

See my little heart on the right? You can have one, too.

It’s also one of the many reasons that live donation is so important. (We’ll talk more about the benefits of live donation in another post.) Every time someone on the list gets a live donor–and can be removed from the wait list–it shortens the wait for the others on the list. Please help save a life by registering to be an organ donor.

5 Truths about Becoming a Living Donor

This is from my original 2017 post on the National Kidney Foundation website.

…Throughout the donor testing—blood draws, X-rays, a stress cardiogram, CT angiography, lung function test, and more—the nurse coordinator was just a phone call away. She offered gentle encouragement, useful tips (like lidocaine to numb my arm for blood draws), and, thankfully, a sense of humor.

After each test I’d call her nervously to see if I’d passed. How would I really feel if I were disqualified? Would I secretly be relieved? To my surprise, I realized I’d be crushed.

So when the psychologist asked if I was sure I wanted to do this, I laughed. “Trust me,” I said. “You can skip to the next question.”

Keep reading!