GIFTED: A Novel and Now a Docuseries
As part of National Donate Life Month, I’ve written recently about the public’s preconceived erroneous notions about organ donation–both living and deceased. These myths tragically keep the numbers of donors down and the number of needless deaths up. More than 100,000 people in this country need a lifesaving organ, for most of them a kidney.…
Donate Life–In Any Way You Can
As a living donor, I’ve chosen to focus the majority of my posts on the lesser-known subject of living donation (most recently, preconceived notions about donors). I haven’t written much about the other kind of organ donation—that is, after death. It’s one of those sobering subjects that often make people uncomfortable (I used to be…
Living Donors Are….
If you finished the statement by saying “saints,” then you’re just the reader I’m looking for. I want to dispel that very idea! Please read on. How about living donors are…”risk takers”? That one too. You see, so many people have preconceived notions about us living donors, that I think it gets in the way…
A Very Productive Day on Capitol Hill
I just figured out that I’ve now participated in more than thirty advocacy (aka lobbying) meetings for the kidney community, mostly at the federal level. My recent meetings in DC for the National Kidney Foundation’s Kidney Patient Summit definitely stand out. I thought I’d share some observations. At their worst–perish the thought!–such meetings risk being…
ASKing Congress–for a “Friend”
My bags are packed, and I’m ready to approach federal legislators and/or their staffers again along with other advocates from the National Kidney Foundation. As usual, we have very important asks. If you’ve read even a few of my posts since I launched this site in 2019, you know that I’ve been lobbying for the…
“Ms. Smith” Goes Back to Washington
Last year at this time I excitedly announced here that I’d be going to Capitol Hill–in person!–for legislative meetings as part of the National Kidney Foundation’s Kidney Patient Summit. Because of the pandemic, the previous several summits had been virtual–important, productive, yes, but no substitute for the real thing. I surprised myself by writing that…
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…
Gifting Books about the Greatest Gift?
My tastes in reading have always been pretty varied. I was never much of a history buff, but I discovered a back door through well-written, riveting memoirs and biographies. Similarly, though I don’t have a science background, I’ve learned so much about organ donation and transplantation through authors’ personal and professional experiences. In recent years…
HOLD Act = Aid for More Would-be Donors
If you’ve read any of my blog posts about financial assistance for living donors, you know that one of my pet peeves (boy, is that a euphemism!) is the practice of making aid for donors dependent on their recipient’s income, as has been the policy through the federal National Living Donor Assistance Center (NLDAC). So…
Seeking Input on Kidney Website Content
It’s been more than four years since I launched this kidney donation website. It’s expanded, the numbers of visits and hits have surpassed my wildest dreams—but it still looks the same. Someday I’d really like to give it a fresh look. I’ve learned a lot over the past few years and would love to make…
Paired Donation Options: Guest Blogger, Martha Gershun
I am very pleased to share this space with a fellow living donor/donation advocate (BTW, her excellent book, Kidney to Share, belongs on your bookshelf right next to The Insider’s Guide to Living Kidney Donation). Beyond direct donation: what if your friends and family don’t match? September 28, 2023 By Martha Gershun, Guest Blogger As…
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…
Living Donors Don’t Get Paid (Yet) But the Rewards Are Still Real
Maybe you’ve heard that there’s a growing movement to find a way to fairly compensate living donors as a way to address the dire kidney shortage. It’s in the form of the Coalition to Modify NOTA (the National Organ Transplant Act). Simply put, NOTA is the reason that though we can pay people to donate…
Minority Donor Awareness Month
Like most “awareness months,” this one should get more attention year ’round. Because minorities are disproportionately affected by chronic kidney disease, they are also disproportionately underrepresented when it comes to organ donation. National Minority Donor Awareness Month is a collaborative initiative of the National (Organ, Eye and Tissue Donation) Multicultural Action Group (NMAG) designed to…
My Favorite Activist: Maggie Kuhn
Today (August 3) is the birth date of someone you may not have heard of but who deserves to be remembered and honored: Maggie Kuhn, the engaging founder of the Gray Panthers. Maybe you saw my recent recollection on Medium of my interview with her in the 1970s or recall my blog post here You’re…
UPDATE: How States Rank in Living-Donor Protections
Last year about this time I published a post about living donation-related protections and benefits, by state. As I mentioned then, while awaiting passage of a federal Living Donor Protection Act, more than half of states have enacted their own version (it’s now 31). In fact, like the one we’ve been supporting in North Carolina,…
Word of the Day: “Eplets”
As I wrote last week, I recently was very fortunate to attend two memorable donation-related events in New York City. Between the National Kidney Registry Awards Gala and the National Kidney Donation Organization’s living kidney donation symposium, I heard fascinating research updates, applauded impressive awards and presentations by dedicated donation advocates, and learned so much.…
A Week to Celebrate!
Last week was quite a memorable one, jam-packed with kidney-donation milestones and special events. First, on June 27, my husband, son/recipient Paul, and I marked kidneyversary no. 17 with our traditional celebratory dinner out (no, no special cakes–we save those for biggies like nos. 10 and 15). Next, two days later found me in New…
What Country Leads the World in Living Kidney Donation?
I honestly don’t know what I would have guessed if asked which country has the highest rate of living donors. Surely not the United States, with all the financial disincentives—yes, we’re chipping away at them—that still exist. The answer is Israel, and a recent article in the Forward explains why: largely a result of a…
Let’s Stop Spread of Misinformation on Living Donors
Where is Nicholas Kristof when we need him? Every few months or so I come across a nervous comment from a recent living donor in a Facebook living donors group who has been told she (yes, more often than not, living donors are women) has stage 3 kidney disease– despite being healthy and having relatively…
She Paid It Forward!
“…One day soon, multiple surgeons, donors and recipients will converge in Gainesville, and like a fine-tuned performance, an intricate ballet of donors and recipients, following multiple operations, lives will be changed. I am honored to be able to donate my kidney to help a stranger in need, to ultimately pay it forward just like the selfless…
Active Athletes, Artists, Academics All Illustrate After-Transplant Benefits
Riddle: What has three transplanted organs and works full time in a demanding, important career into her seventies? Answer: Elizabeth (Betsy) Crais, my co-author and friend–the academic energizer bunny–whose retirement party I just attended at the University of North Carolina at Chapel Hill. In addition to her regular responsibilities as a professor and researcher, Betsy…
Did You Know?
National Donate Life Month is nearly over, but of course it’s a topic that we should talk and write about all year long. I’m always happy to debunk myths or highlight little-known facts about organ donation–particularly living donation–so I thought I’d resurrect another Donate Life Month quiz. Let me know how you do–and please share…
Why NOT Donate Life?
As you surely know by now, April is National Donate Life Month. The vast majority of my posts, naturally, are about living donation and transplant and kidneys. I haven’t written much about the more well known topic of organ donation—that is, after death. It’s one of those subjects that make some people uncomfortable (I was…
A Personal Record for Donate Life Month
Happy Donate Life Month! I just got terrific news. This site just surpassed 20,000 hits! Most of course were from the United States but also from 78 other countries since I launched it in 2019! If you value what you’ve read here, please consider sharing the link and help me spread awareness of living donation,…
Kidney Patient Summit on Capitol Hill
Yes, I finally made it! I made it all the way to the Capitol earlier this month for in-person meetings. During a hectic but fun afternoon of training and getting to know my delightful team members (pictured at right), we got tips not only on the legislative “asks,” but also on the fine points of…
A Playful Homage to My (Remaining) Kidney
In honor of National Kidney Month, I try to do my part as an advocate–and a living donor–to spread awareness of kidney disease, kidney donation, and organ transplant. I’ve had a healthy respect for kidneys ever since I first accompanied my son to his dialysis sessions many years ago–before I gave him my kidney in…
Mr. Smith–uh, Ms. Offen–Goes to Washington!
If you’ve been following this blog for awhile, you know that I’ve had many many meetings “on Capitol Hill” as a kidney advocate. Productive days filled with back-to-back meetings with legislative staffers, even some members of Congress–as part of the National Kidney Foundation’s Kidney Patient Summit and the American Society for Nephrology-led Community Advocacy Day.…
Happy to Pay It Forward
Recently, I was excited to receive a very happy update to a long, frustrating quest for a kidney. Stormi Murtie, a North Carolina woman who had contacted me last year when she learned of our book, had been tirelessly trying to get a kidney for a loved one to whom she could not donate. She’s…
Righting Another Race-Based Handicap at Last
Critical wait times on national lists for a kidney–typically several years long–are finally being adjusted to make them more accurate and fair to African Americans. This move is all the more important because black people in the United States are nearly four times as likely as whites to have kidney failure. I don’t think most…
New Year’s Resolutions
True, new year’s resolutions tend to fall by the wayside after a few months for most people, but we keep making them anyway. Maybe this year will be different. I looked at the resolutions I posted last year at this time and they’re still good, so please give them a try. Whether you have one…
Good News and Bad News
If you’re anything like me, you’ll want to read the bad news first. (I’ve never understood why anyone would want to hear good news first, feel terrific, only to then be brought back down and left with sad or depressing news.) So, first the bad news: The Living Donor Protection Act, which was first introduced…
Thanksgiving Dinners and Donors
Every Thanksgiving at my house, we go around the table after dinner and talk about what we’re each thankful for–a fairly typical American tradition that for us started when my adult kids were little kids.The usual topics come up, of course: being together, good health, good news, good food. Naturally, one not-so-typical topic also has…
Contributor Spotlight: Emotional Challenges of Caregiving
Some people support living donors and transplant recipients not only on a practical basis but emotionally. Two of The Insider’s Guide to Living Kidney Donation’s contributors are authorities on the subject. One is a licensed professional counselor, Kathleen Fitzgerald, whose clients often include families contending with the emotional fallout of kidney failure, transplant, or any…
Why Is Living Donation So Important?
According to polls, the vast majority (90%) of Americans favor organ donation after death–yet, only about 60% are registered to be organ or tissue 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…
Still Advocating After All These Years
Last week I had a day of back-to-back virtual meetings with congressional staffers–plus one congressman!–to talk about the Living Donor Protection Act and kidney health in general. Hard for me to believe that this was my fifth such event. Unlike most of the others I’ve been a part of, this one represented a partnership of…
National Foundation for Transplants, Trees, and Me
When I launched this website in early 2019, my goal was simple: to raise awareness of living donation by sharing my story of donating to my son, along with timely posts and practical resources to help donors and would-be donors–and anyone interested in supporting people with chronic kidney disease. I threw in a dose of…
Contributor Spotlight: Workplace Friends as Donors
Many people assume that you have to be a blood relative to donate your kidney to someone. And in the early decades of living donation, that was pretty much the case. Family members are still the largest single group of living donors, but the percentage of unrelated donors has been growing. This contributor spotlight highlights…
Donors Don’t Get Paid, But the Rewards Are Still Real
Every once in a while, I mindlessly scroll through my website stats to see how a particular blog post or month of posts fared. I was curious when I noticed “Best Views Ever” (in more than three years): November 28, 2020. Hmm, what might that have been, I wondered. Naturally, I had to check it…
How’s Your State Doing on Donor Protection Measures?
In my last post I promised information about living donation-related protections and benefits, by state. As I mentioned, while awaiting passage of a federal Living Donor Protection Act, more than half of states now have their own version (28 at last count). In fact, like the one we’re supporting in North Carolina, some actually are…
NC’s Living Donor Protection Act Back to Square 1
Everyone seemed to think the bill was oh-so-close to passing this session. And, personally, I was honored–and very excited–to be one of three local advocates invited to the National Kidney Foundation’s planned legislative breakfast with a few supportive state representatives. NKF wanted us to share our personal views of why the state needs to protect…
Contributor Spotlight: All in the Family
I explained in our first Spotlight on Contributors why we devoted a whole section of our book, The Insider’s Guide to Living Kidney Donation, to family dynamics. The chapters by the following two contributors–Monica Sheppard and Daniel Ranch–illustrate how different families handle medical crises differently, yet with some surprising similarities, regardless of their background. Monica…
Kidneyversary: 16 Years and Counting
In case you’ve only recently discovered this blog, you should know that I donated my kidney to my adult son, Paul, on June 27, 2006 (he shared his reflections in a 2019 post). This week we arrived at the Sweet 16 mark! Both of my kidneys, by the way, are still going strong, faithfully doing…
A Virtual Trek for Transplant
I’ve been on vacation and haven’t been here in a long while. What did I miss? One cool activity that I know is already under way is the Trek to the Games (that’s the Transplant Games 2022, which will be held July 29 to August 3 in San Diego). California is a long way from…
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,…
More Living Donors Could Get Financial Help!
High on the list of ways to encourage living donation (after educating people about living donation, of course) is to make the experience financially neutral. That is, not that live donors earn money for their organs (though some experts have made a case that that actually might be done efficiently and fairly)–only that no one…
Contributor Spotlight: Doing All They Can to Help Donors Donate
Some of the most dedicated, ardent advocates of living donation I know are neither living donors nor transplant recipients themselves. That’s surely the case for these two contributors–Tammy Wright and Jenine Lewis–to our book, The Insider’s Guide to Living Kidney Donation. For Tammy, who has helped donor and recipient pairs as a transplant coordinator for…
Because of Organ Donation
As a living kidney donor, I launched this website primarily to share information about living donation. Because it was my son, Paul, who got my transplanted kidney, I also often write about chronic kidney disease and transplant recipients. And, because I fervently believe in organ, eye, and tissue donation generally, I sometimes write, too, about…
A Big Week in the Life of a New Book!
A very big week for Betsy and me in garnering attention for our new book, The Insider’s Guide to Living Kidney Donation! We taped two TV interviews: for ABC11TV (wIth Amber Rupinta, airing tomorrow, March 11) and for Spectrum TV (with Heather Fordham, airing next week)! Plus the terrific article in Chapel Hill Magazine, by…
Kidney Patient Summit: Voices and Faces
As part of the annual National Kidney Foundation Kidney Patient Summit yesterday, I spent most of the day in virtual meetings with congressional staffers for my congressman, Rep. David Price; both senators, Thom Tillis and Richard Burr; and North Carolina representatives Deborah Ross and David Rouzer. I was very fortunate to be joined by a…
Black History Month and the Present
Happy to share this important blog post from Gail Rae-Garwood, a fellow advocate, in honor of Black History Month. Given that African Americans are so disproportionately affected by chronic kidney disease, the low representation among nephrologists is all the more unfortunate. In August, we celebrate Minority Awareness Month, and March is National Kidney Month, but…
Living Donors Climbing Mt. Kilimanjaro?
Yes, you read that right. In a recent magazine interview, I was explaining that I still lead a healthy active life, at 73, about 15 years postdonation. I was never an athlete, but I knew plenty of donors who ran marathons, I said. Being a donor typically rules out only activities like contact sports–and, say,…
Kidney Donation: True or False
It occurred to me once again the other day that if we ever hope to increase awareness and encourage living donation, we still need to clear up a few misconceptions and teach the basics. Did you know the answers to these true or false questions? 1—You have to be a blood relative to donate your…
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…
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…
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…
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…
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,…
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…
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…
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…
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…
#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…
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.…
Talking from the Heart about Kidneys
I used to think that all donation advocates had to be well stocked with facts and figures to be effective. And then I discovered that the ability to humanize the experience of living donation and kidney disease for lawmakers was mostly all the data I needed. Fortunately, because of my research for my book on…
Hear Ye, Hear Ye! It’s Finally Here, Yay!
It’s official–no more countdown. No need to watch for, to be patient, to pre-order. The Insider’s Guide to Living Kidney Donation, by Carol Offen and Elizabeth Crais– seven years in the making–is officially published as of today, the 23rd of September, in the year two thousand and twenty-one. In honor of this special day, we…
Launching a Book in the Time of COVID
What a kick it was for Betsy and me to celebrate the launch of our new book, The Insider’s Guide to Living Kidney Donation, with our contributors, supporters, families, and friends this weekend. A book launch COVID-style, that is. The official publication date is next week, on September 23, but after waiting roughly seven years,…
Frog in Throat vs. Paper in Mouth
It’s an age-old dilemma, of course: is it better to have a frog in your throat or a paper wrapper in your mouth? I had an opportunity to test that crucial question in a recent live broadcast on Urban Health Outreach Media, Kidney Stories 2. Picture this: I was struggling to clear my raspy throat…
LIVE on Kidney Stories 2 Tonight!
My co-author, Betsy Crais, and I are going to be guests tonight– 8 pm EST live–on Urban Health Outreach Media’s Kidney Stories 2 with “Uncle Jim” Myers. We’ll cover a lot of ground (about our own donation and transplant experiences and, of course, “the book”) in a nearly hour-long interview. Please join us! Jim, a…
Selena Gomez: Are You Vaccinated?
I trust that you are because you’ve spoken out against COVID vaccine misinformation. In the winter, I wrote about the importance of everyone getting vaccinated, particularly transplant recipients like Stevie Wonder, Selena Gomez–and my son. In the spring, we learned that organ recipients, who must take immunosuppressants to keep their body from rejecting the gifted…
Quick (Important) Read Before Getting the 3rd Jab
When I wrote on Friday that CDC approval of a third COVID vaccine dose for organ recipients was going to happen really soon, it wasn’t hyperbole. It actually happened that very afternoon (Friday August 13)! My family, like so many other donor/recipient families, was elated. Our first impulse was “quick, get thee to a pharmacy!”…
Great News for Organ Recipients!
I’ve never done this before, but this is in fact BREAKING NEWS: In case you haven’t seen the headlines: the Food and Drug Administration has just approved a third COVID-19 shot (Pfizer and Moderna) for organ transplant recipients! The Centers for Disease Control and Prevention is expected to give its own approval very soon—as in,…
Could You Be a Kidney Donor? What to Expect If You Give the Greatest Gift 