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
On the last day 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…
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,…
Our Living Kidney Donation Book Is Finally Here!
Well, would you look at what the UPS truck just brought: advance copies of “the book”! At long last, The Insider’s Guide to Living Kidney Donation is a reality! Here are a few interesting book-related stats for you trivia buffs (most of them not the kind of stats that WordPress will show in a widget):…
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,…
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…
“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 . . .…
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…
Happy 15th to The Comeback Kidney!
We’ve been celebrating the anniversary of the day I donated my left kidney (yes, we named it The Comeback Kidney) to my adult son, Paul, every year. Sometimes with a big party: And a few fun mementos, courtesy of Paul’s sister, Nora: Sometimes with whatever we could manage, as in 2020 when we were dealing…
Have You Heard This One?
As someone who’s always tried to find the humor in serious situations, I can attest that even kidney donation can include some laugh-out-loud moments. I know I’m not alone, as I wrote last year in a blog post on hilarious questions and comments that fellow living donors on Facebook have heard. Example: “OMG, they didn’t…
Live Radio Looks at Live Donation
As our book’s publication approaches, and Betsy recovers from her recent dual transplant (17 years after her first kidney transplant), I’ve started receiving interview requests. Last week we were invited to be on San Francisco’s NPR affiliate KQED’s live radio show, The Forum. Since Betsy was still in the hospital, I was solo for the…
“The Call”!
Big news: My friend and co-author, Betsy Crais, just got “the call” she’s been waiting for ever since her first (live-donor) transplanted kidney failed more than a year ago–after 15+ years. She is now the proud and very grateful recipient of a healthy kidney and a liver from a deceased donor. She is recuperating well.…
Still Reaching Beyond Our Grasp…
I’m proud and excited to unveil our book’s beautiful cover. We believe it strikes just the right tone and look (given the heavy subject matter, we had to walk a fine line between too somber and too cutesy). The designers did a great job. That the gift-wrap concept was inspired by my dear friend and…
Vaccinated But Still Not Protected?
Like most people, I’m excited to see the relaxed CDC guidelines about fully vaccinated people being able to participate in so many vaguely familiar activities: dinners with friends indoors, movies that aren’t on our home screen, indoor Zumba classes, and on and on. Yet for my son and many thousands of other immunosuppressed individuals, those…
So How Unlikely Is It for a Donor to Later Need a Transplant?
In a word: very. Yes, it’s crucial to consider the what ifs when contemplating something as important as living donation. And yes, later needing a transplant is more likely for a donor than it is for a healthy person who has never donated. But here’s the bottom line: there’s about a 1% chance on average…
“B Positive” Edging Closer to a B+
Back in December, I surprised myself by admitting that I actually liked–even if not loved–this unlikely new sitcom about a guy needing a kidney. I was willing to give it the benefit of the doubt and encouraged others to watch for signs of improvement or offer constructive feedback. Before I got caught up on the…
Letting Your Donor Find YOU–Really!
If you didn’t already know that there’s a critical kidney shortage, I hope you’ve seen the social media posts, including on this blog, and the public education campaign in honor of National Donate Life Month. If not, I can sum up very briefly: there simply are not enough available organs for all the people who…
Here’s to You, Living Donors!
During Donate Life Month, the focus is typically on urging people to register to be donors after their death to try to meet the critical organ shortage. More than 100,000 people in the United States are currently waiting for an organ, most of them for a kidney. The reality is that, even though registering to…
Ode to My (Remaining) Kidney
Like most people, I was born with two kidneys and they’ve served me well. Since 2006, the left one has been working in my son’s body and doing a terrific job. That’s the one that gets all the attention. So, as National Kidney Month draws to a close, I thought it only fair to devote…
No, No, Living Donors–Don’t Think You Have Kidney Disease!
Every few months, I hear about living kidney donors who are worried about their recent diagnosis of “stage 3 kidney disease.” Sounds scary. The first time I heard that, several years ago, I was upset at the news, which seemed to be very common. Until I read further and learned that these donors were apparently…
Advocacy Ripples in the Medical Community
I became a living kidney donor simply out of necessity, because my son needed a kidney. I became an informal donation advocate basically because the experience was so much easier than I feared, and so gratifying that it had an extraordinary impact on me, so I wanted others to know about it. At first I…
World Kidney Day Should Last All Year
Like so many things that receive a designated day or a month of honor, kidneys deserve our attention every day. I’ve had a healthy respect for them ever since my son’s kidneys began to fail soon after he graduated from college and he had to start dialysis. Dialysis is a remarkable process, removing the toxins…
My Do’s and Don’ts for Advocacy
Had a very full–and rewarding–day of meetings with congressional staffers and fellow National Kidney Foundation advocates last week as part of NKF’s Virtual Kidney Patient Summit, which drew nearly 250 advocates. We shared our personal connections to kidney disease and briefly outlined kidney-related legislative priorities. My group’s first meeting of the day was with Nora…
Stevie Wonder: Are You Vaccinated?
I’m asking not just as a concerned long-time fan but mostly because he’s in the over-65 age group and, even more important, a kidney transplant recipient. The latter is a particularly vulnerable group because of having a tamped-down immune system designed to avoid attacking his transplanted kidney. If a kidney recipient like Stevie Wonder, or…
A Perfect Podcast to Honor National Donors Day
It’s been a busy couple of weeks since I last wrote about recording a guest spot on “This Podcast Will Kill You.” The episode on organ transplants aired this week and is available now. It fittingly arrived just in time for National Donors Day, which falls on Valentine’s Day. Learning about the fascinating biology and…
Talking about Books
I have so much to report this week as our book The Insider’s Guide to Living Kidney Donation makes its way to publication. Our copy editor is finishing up the detail work, and several people we admire in the donation and kidney community are reading the manuscript in preparation for writing back-cover blurbs! I’ll keep…
Living Donors: What Do You Think About COVID Vaccines?
Last week I wrote about issues surrounding kidney recipients’ getting a COVID-19 vaccine. In it I offhandedly mentioned that risks and priority currently aren’t considered particular issues for living donors. So I’ve been trying to get an appointment for a COVID vaccination ever since the eligibility in my state opened up to include people over…
Should Kidney Recipients Take the COVID Vaccine–and When?
This week I attended a National Kidney Foundation webinar that answered questions about kidney patients and the COVID vaccine. As the mother of a kidney transplant recipient (my recipient, actually), I naturally have a particular interest in the topic. As a living donor, though, it doesn’t appear that I have any reason to need or…
A Look Back at 2020 Posts
It seems that almost everybody does a top-10 of something at year’s end, so why should kidney bloggers be left out? Here are my most-viewed posts of the past year (or thereabouts): 1. Did You Know? Pass It On Whether you’re a donor, a potential donor, or a kidney patient looking for a donor, here…
Could You Be a Kidney Donor? What to Expect If You Give the Greatest Gift 