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 … Continue reading Thanksgiving Dinners and Donors
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 … Continue reading Contributor Spotlight: Emotional Challenges of Caregiving
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 … Continue reading Why Is Living Donation So Important?
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 … Continue reading Still Advocating After All These Years
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 … Continue reading National Foundation for Transplants, Trees, and Me
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 … Continue reading Contributor Spotlight: Workplace Friends as Donors
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 … Continue reading Donors Don’t Get Paid, But the Rewards Are Still Real
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 … Continue reading How’s Your State Doing on Donor Protection Measures?
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 … Continue reading NC’s Living Donor Protection Act Back to Square 1
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 … Continue reading Contributor Spotlight: All in the Family
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 … Continue reading Kidneyversary: 16 Years and Counting
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 … Continue reading A Virtual Trek for Transplant
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 … Continue reading Another Donate Life Month Quiz
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 … Continue reading More Living Donors Could Get Financial Help!
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 … Continue reading Contributor Spotlight: Doing All They Can to Help Donors Donate
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 … Continue reading Because of Organ Donation
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 … Continue reading A Big Week in the Life of a New Book!
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 … Continue reading Kidney Patient Summit: Voices and Faces
Originally posted on SlowItDownCKD :
I’ll bet you thought I’d forgotten all about Black History Month. Not at all, dear readers, not at all. It’s just that since this is a yearly occurrence and I’ve been blogging about kidney disease for 14 years, it becomes harder and harder to uncover Black nephrologists I haven’t written about…
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, … Continue reading Living Donors Climbing Mt. Kilimanjaro?
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 … Continue reading Kidney Donation: True or False
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 … Continue reading Spotlight on Our Contributors
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 … Continue reading A Right to Refuse?
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 … Continue reading CrowdSource for Life Itself
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 … Continue reading New Year’s Resolutions for Donors and Would-Be Donors
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, … Continue reading Vaccines to Protect That Precious Gift
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 … Continue reading Why Not Just Wait for a Deceased Donor? Here’s Why
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 … Continue reading Relax, Living Donors: Your Kidney Function Is Probably Just Fine
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 … Continue reading Save $$ and Spread the Word
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 … Continue reading A Third Shot Wasn’t the Charm
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 … Continue reading #3, Thanks to You!
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. … Continue reading Why Does Everybody Want a Live Donor?
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 … Continue reading Talking from the Heart about Kidneys
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 … Continue reading Hear Ye, Hear Ye! It’s Finally Here, Yay!
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, … Continue reading Launching a Book in the Time of COVID
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 … Continue reading Frog in Throat vs. Paper in Mouth
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 … Continue reading LIVE on Kidney Stories 2 Tonight!
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 … Continue reading Selena Gomez: Are You Vaccinated?
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!” … Continue reading Quick (Important) Read Before Getting the 3rd Jab
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, … Continue reading Great News for Organ Recipients!
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): … Continue reading Our Living Kidney Donation Book Is Finally Here!
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, … Continue reading Who Are We (Living Donors)?
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 … Continue reading A Third Shot Could Be the Charm
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 . . . … Continue reading “Insider’s Guide to Living Kidney Donation”: Take a Peek Inside
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 … Continue reading We Need the LDPA: Best-Case Scenario Is Hardly Good Enough
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 … Continue reading Happy 15th to The Comeback Kidney!
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 … Continue reading Have You Heard This One?
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 … Continue reading Live Radio Looks at Live Donation
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. … Continue reading “The Call”!
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 … Continue reading Still Reaching Beyond Our Grasp…
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 … Continue reading Vaccinated But Still Not Protected?
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 … Continue reading So How Unlikely Is It for a Donor to Later Need a Transplant?
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 … Continue reading “B Positive” Edging Closer to a B+
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 … Continue reading Letting Your Donor Find YOU–Really!
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 … Continue reading Here’s to You, Living Donors!
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 … Continue reading Ode to My (Remaining) Kidney
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 … Continue reading No, No, Living Donors–Don’t Think You Have Kidney Disease!
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 … Continue reading Advocacy Ripples in the Medical Community
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 … Continue reading World Kidney Day Should Last All Year
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 … Continue reading My Do’s and Don’ts for Advocacy
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 … Continue reading Stevie Wonder: Are You Vaccinated?
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 … Continue reading A Perfect Podcast to Honor National Donors Day
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 … Continue reading Talking about Books
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 … Continue reading Living Donors: What Do You Think About COVID Vaccines?
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 … Continue reading Should Kidney Recipients Take the COVID Vaccine–and When?
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 … Continue reading A Look Back at 2020 Posts
Between you and me, “B Positive,” the new CBS sitcom about a guy needing a kidney, isn’t bad. I mean, I’ve always been a fan of dark humor, so I wasn’t put off by the idea. But I was sure they’d go for the cheap laughs and get it all wrong–just adding to all the … Continue reading Can “B Positive” Earn a B+?
The good news in my last post was that the House had passed the Immuno Drug Coverage bill extending Medicare coverage for kidney transplant recipients’ medications past 3 years. Next step was the Senate. I’m thrilled to report now that after nearly 20 years of advocacy by the transplant community, this bill is finally going … Continue reading “Good News” on Immuno Drug Bill Is Now Great News!
So glad to have good news to report on the Immuno Drug coverage bill that would extend Medicare coverage of anti-rejection meds for people not otherwise eligible for Medicare. The bill passed the House last week with strong bipartisan support (that alone is worth cheering) as part of the BENES Act (Beneficiary Enrollment Notification and … Continue reading Good News on Immuno Drug Bill
The news this week that the National Living Donor Assistance Center, or NLDAC, had expanded its eligibility and its benefits is certainly welcome and long overdue. I remember submitting (and later posting here) my public comment on its proposals back in May 2019. The changes are well worth cheering about: for starters, the income-level cutoff … Continue reading It’s Great to See More Financial Aid for Donors…But
In previous posts, I’ve described some of the enormous benefits of a live vs. deceased-donor kidney transplant for the recipient, but did you know that there are many very real benefits to the living donor, too? For family members or couples, the benefits are nothing short of dramatic. And I’m not just talking about feel-good … Continue reading Kidney Donors Don’t Get Paid, But the Rewards Are Very Real
As a kidney recipient, my son, Paul, and other transplant recipients have to take essential anti-rejection medications to keep their bodies from rejecting the precious new organ they were given. Unfortunately, to avoid rejection, the meds have to lower the body’s natural immune system. The trick is to do that without the recipient’s getting an … Continue reading Wear a Mask! The Life You Save May Be My Son’s