In the Top 10 of Kidney Donor Blogs
Instead of flying to Washington, DC, in March with other advocates for the National Kidney Foundation Kidney Patient Summit as planned pre-COVID, we Zoomed and Hopped in last week for virtual meetings on Capitol Hill. Admittedly, virtual was less of a kick than the real thing, but it was surprisingly effective in garnering cosponsors for … Continue reading Zooming into DC for a Unique Virtual Kidney Patient Summit
I hate to brag (no, actually, I’m proud of it!), but today I had my best creatinine and eGFR test results since I donated my kidney to my son 14 years ago. Creatinine reflects the amount of toxins in the blood (lower is obviously better), and GFR is an overall measure of kidney function (the … Continue reading Wait Till You See My eGFR!
Living donors and about-to-be donors in Facebook support groups (among other places!) are an incredibly supportive, caring bunch of people. I discovered these terrific groups just a few years ago, long after I donated to my son in 2006. We rejoice at one another’s exciting news and “kidneyversaries” and try to offer comfort in times … Continue reading Donors Say (and Get Asked) the Darndest Things!
Well, this is exciting: I just hit the 5,000-visitors mark–and more than 7,000 views! I launched this site officially last year with a blog post, fittingly, on National Kidney Month and National Women’s Month–and what these amazing specimens have in common. As a living kidney donor myself (I donated to my son in 2006), my … Continue reading Helping Donors and Would-Be Donors, 1 Visitor at a Time
Did you know that about 60% of the 112,000 patients on the deceased-donor waiting list for an organ (most of them for a kidney) are minorities? African Americans are the single largest group, at about 29%. Making this sad statistic even worse is that registered minority organ donors make up only about 14% of total … Continue reading Minority Donor Awareness Month
Did you ever read about the kidney patient who wore a tee shirt at Disney World emblazoned with a plea for a donor (and found one)? Or maybe you’ve heard of people putting up a sign on their car or on a sandwich board saying they’re looking for a type O donor. Were you moved–or … Continue reading Why All the Fuss about Finding a Living Donor?
When I wrote the blog post below back in March, I really hoped it would be less relevant by the summer. Surely life would be starting to get back to normal by June or July, I thought. It’s hardly normal now here in North Carolina, and I hope it’s getting better where you live. On … Continue reading Updates on COVID Resources for the Kidney Community
As I recover from a broken wrist, typing and dictation have been tricky–hence so few posts in recent weeks. But here’s a wonderful and riveting story I want to share about the challenges of navigating a kidney transplant amid the coronavirus (spoiler alert: of course it has a happy ending). The transplant in question just … Continue reading Don’t We All Need a Happy Story?
This weekend marked 14 years since I donated my kidney to my son, Paul, who was 26 at the time. (He told his side of the experience in a post last year.) I’m happy to report that both of my kidneys are still doing well in their respective homes, so we naturally celebrate this important … Continue reading Kidneyversary, No Matter What
I’ve been emailing, calling, and visiting state legislators and members of Congress for a long time about supporting and protecting living donors. I don’t mean the feel-good kind of support that calls us “heroes” and “awesome folks” but takes no action. I’m talking about finding meaningful ways to remove hurdles that can be deal breakers … Continue reading Don’t All Donors Deserve Donor Shield?
I think it’s only fair to warn you that this short post has absolutely nothing to do with kidneys, organ donation, or advocacy. But today is a special day, and attention must be paid. Today, amazingly, marks 50 years since my husband and I got married on a rainy Friday night in New York City. … Continue reading A Time to Celebrate
In the course of updating our book manuscript on living kidney donation, we were hoping to see lots of progress in job protections and financial assistance–such as paid leave laws and tax deductions/credits–for living donors. Well, the good news is that there has been some progress. More states are offering paid leave and tax benefits … Continue reading Does Your State Offer Paid Leave to Donors?
My co-author, Betsy Crais, and I have been busy making revisions and updates to our book manuscript (The Greatest Gift: The Insider’s Guide to Living Kidney Donation). With the pandemic necessarily dominating the news and publishing world, this seemed like a good time to concentrate on honing our manuscript rather than sending out proposals. As … Continue reading Preparing The Greatest Gift
When we see a movie or TV show on a medical topic we know a lot about, we may roll our eyes when they take dramatic license, but we often just shrug it off. When the subject is something people are less familiar with, like organ donation and living donation, a flawed story can make … Continue reading Donation and Hollywood Endings
Whether you’re a donor, a potential donor, or a kidney patient looking for a donor, here are a few intriguing facts everyone should know about living donors: More than a third of living kidney donors are over 50 years old (I was 58 when I donated to my son 14 years ago), and the proportion … Continue reading Did You Know? Pass It On!
I just saw that this site’s views for April were the second highest since I launched the website 14 months ago. I noticed something else: the record month, October, happened to feature the same blog I posted about last week on Twitter and in a couple of living kidney donor support groups on Facebook: “Just … Continue reading Donors Need to Know All the Good News, Too
I had a delightful surprise today. I learned that the National Kidney Foundation had posted my expanded version of my blog post about the clear benefits of live donation for the donor. This is the first time my byline has said “Carol Offen, NKF Kidney Advocate”–a true honor! Read my article in the NKF newsletter … Continue reading NKF Posts a Few of Donor’s Benefits in Living Donation
Several months ago I was excited to learn that financial assistance for living donors was going to be substantially expanded—encompassing more people and for more kinds of noncovered expenses, like lost wages, childcare, and eldercare. As a living donor and advocate, last year at this time I provided public comment on the subject and followed … Continue reading Reimburse Living Donors’ Lost Pay–and More
The National Kidney Foundation asked us advocates to make a video on Why I Advocate. Now, for me, making a video sounded pretty daunting. The message part wasn’t the problem. I wrote that fairly quickly once I decided to keep it simple. Instead of focusing on living donation, I would just talk about chronic kidney … Continue reading “Why I Advocate” (the Video)
If you’re reading this, chances are you’re considering donating a kidney or have already done so–but you also very likely know and care very much about someone who has chronic kidney disease (in my case my son, Paul, and my friend/co-author, Betsy, for starters). Or maybe you have it yourself. With kidney patients at a … Continue reading Coronavirus, Kidney Patients, and Everyone Else
Most of my kidney-related milestones mark the number of years since I donated to my son (2006), who was diagnosed with chronic kidney disease when he was in college. This month I get to celebrate a different kind of milestone: one year since I launched this website! I didn’t know what to expect when I … Continue reading Celebrating Milestones
March 12 is World Kidney Day, and it seems fitting to continue our theme of women and kidneys (two of my favorite subjects). In a recent post, I pointed out that neither gets the respect and attention they/we deserve. It’s mostly because most people just don’t know a whole lot about what they do: in … Continue reading Happy World Kidney Day–with a shout-out to women!
Just read another wonderful piece about the kidney recipient/hockey goalie, David Ayres, who helped win the game for the Carolina Hurricanes last month. The fascinating stories have brought much-needed attention to kidney disease and transplant. In his honor, the Hurricanes sold No. 90 shirts, and part of the proceeds is going to the National Kidney … Continue reading Kidney Recipient/Goalie Goes for the Green
Yes, March is National Kidney Month and National Women’s History Month. What do kidneys and women have in common, you ask? For starters, both are underappreciated. We can hope that someday we will get to a point where we don’t need to introduce people to integral aspects of our culture and our history (like Black … Continue reading Happy National Kidney Month and National Women’s Month!
In my last post I wrote about celebrities who’ve been given a shot at a fuller, healthier life because of a living kidney donor. If you thought they mostly led quiet restricted lives, along comes David Ayres, the emergency goalie who won the game for the Carolina Hurricanes hockey team against the Toronto Maple Leafs! … Continue reading Goalie who scored a kidney helps win NHL game!
What do the celebrities listed below—among them, athletes, actors, musicians, of different ages, races, and ethnicities—have in common? They’re all healthier, and very likely happier, because a living kidney donor gave them a shot at a better quality of life. The best way to shorten someone’s wait for an organ–rich or poor, famous or not–is … Continue reading What Do These Celebrities Have in Common?
Happy Valentine’s Day AND National Donors Day! You don’t need to be a living donor like me to be able to someday save a life–or several, in fact. If you don’t have that little heart on your driver’s license and haven’t already registered as an organ donor, please don’t wait to renew your license: go … Continue reading Happy National Donors Day!
I always tell potential kidney donors to keep an open mind but to do their homework and be as well informed about living donation as they can be. Turns out that that advice even applies years later. Through social media donor support groups, I recently was stunned and outraged to learn that some donors have … Continue reading Donors, Your New-Normal Numbers Don’t = Kidney Disease!
This week I met with North Carolina Rep. Verla Insko, my state legislator, and Katey Cipriani, the National Kidney Foundation’s regional community outreach director. The topic was living donation, of course. We were seeking Rep. Insko’s support for a Living Donor Protection Act in our state, as we had with other legislators just a few … Continue reading Protecting Living Donors from Discrimination
Before my son was diagnosed with chronic kidney disease in 2004, I knew as much as most people about the subject—which is to say, almost nothing. Not sure if I even knew you can live a normal life with one kidney. Before he developed kidney failure, and I started the evaluation process for donating my … Continue reading Health Information Is Power!
A while back I wrote here about the insanity of cutting off lifesaving drug reimbursement for kidney patients. I’m happy to report some real progress on that front. At long last, a bill to extend Medicare coverage for kidney transplant patients–and Honor the Gift of life–is ready for a committee hearing this week! HR5534 is … Continue reading Getting Closer to Extending Drug Coverage for Transplant Patients
Originally posted on Could You Be a Kidney Donor? What to Expect If You Give the Greatest Gift:
Have you seen this excellent, candid article about the issues a young family man grappled with before making the decision to donate? It’s a very honest, clear-headed portrayal of what it means to be a living donor.
You may have heard that Stevie Wonder had a kidney transplant recently from a living donor, and, fortunately, all is well. There’s been much speculation about the identity of his donor. If you too have been speculating, let’s test a few assumptions–and clarify a few things about living donation while we’re at it. What do … Continue reading Wondering Who Gave a Kidney to Stevie Wonder?
I’ve enjoyed sharing my story of donating a kidney to my son, Paul, with just about anyone who’ll listen, in most every medium available: in person, of course (IRL, as they say); in print; online; on radio; on TV—and, most recently, the coolest yet: an interactive multimedia wall. What, you ask, is a multimedia wall? … Continue reading A Multimedia Tribute to Donation
The idea of meeting with state legislators to push for protections for living donors sounded a bit intimidating at first. I’d often emailed legislators and committee members, of course, and called my members of Congress about a national Living Donor Protection Act, but in-person meetings were a whole new ballgame. That’s what advocates do, though, … Continue reading Bonding with State Legislators
This weekend my husband (Neil), son (Paul, my recipient), and I participated in our umpteenth National Kidney Foundation Triangle Kidney Walk [see my post on our long history of kidney walks], in Durham, NC. We were thrilled to learn that it set a record for donations: more than $97,000, with money still coming in. I … Continue reading A Cold But Successful Kidney Walk
I’ve long been amazed and frustrated that most people know little about kidney disease and are unaware of the public health crisis: nearly 100,000 people in this country are waiting for a kidney from a deceased donor, and most will wait several years. For many, that’s too long, and thousands die every year because they … Continue reading Powerful Push to Promote Public Awareness of Kidney Disease
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 … Continue reading Living Donor Registry and At-Home Test for Donors
A short while ago I came across “The Top 30 Kidney Donor Blogs and Websites to Follow in 2019.” It lists individual personal blogs from donors and recipients, plus from major organizations (nearly half of the websites listed, in fact) like the National Kidney Foundation and the National Foundation for Transplants. Last week I noticed … Continue reading The Top Kidney Donor Blogs
Another Triangle Kidney Walk date is approaching: Sunday, November 17, in nearby Durham, NC. My husband, son, and I (our daughter’s up in Brooklyn) will be there as usual. We’ve walked in more of them than I can count: three or four recent National Kidney Foundation walks starting at the present Durham Bulls Ballpark location; … Continue reading Still Walking after All These Years
I just read a stunning statistic that was extremely reassuring for living donors, so I just had to pass it on. You may already know that living donors have less than a 1% chance of someday developing kidney failure themselves. Did you know that in the “unlikely event” that a living kidney donor ever needs … Continue reading Just How Unlikely Is It for a Donor to Need a Transplant?
I’ve long thought that living donors are a special breed. Whether we live in Iowa or North Carolina, the United States or India, Australia or France, I fully believe we have more in common than what separates us. As I discovered so vividly at the Living Donor Rally at the Bean in Chicago last year, … Continue reading DonorPlus, the App for Potential Living Donors
Last week was the first local NC WELD (as in Women Encouraging Living Donation) meeting of the year, and I’d looked forward to seeing the Triangle group again. The last meeting, held at my house in May, featured two Duke transplant surgeons. Unfortunately, September’s meeting drew a very small group. We met at the home … Continue reading NC WELD: Time, Passion, and Commitment
This week Betsy Crais and I spoke at another terrific Living Donor Champion workshop. I’ve written about the one we did in the spring at UNC Transplant Center plus the National Kidney Foundation’s Big Ask, Big Give in June at Rex Hospital in Raleigh, NC. It’s funny that I’m starting to feel so comfortable at … Continue reading Living Donor Champion Redux
I just discovered an embarrassing glitch (aka technological error) in this brief post, so I’ve corrected it and reposted. There are still many myths about what’s involved in donating a kidney, and here are a few. I first included these in an article in 2017 and have already needed to update a couple of them … Continue reading 5 Truths about Becoming a Living Kidney Donor
As a volunteer UNOS Ambassador, I was excited to participate in a focus group recently on using plain language in proposals about how lifesaving organs are allocated in this country. UNOS (the organization that manages the organ transplant waiting lists) was proposing changes to the current distribution system. It was seeking public comment from people … Continue reading Health Materials in Plain English
Funny how things take on a life of their own. Less than 3 years ago when I was interviewed at length on “Your Health” radio show and asked to tell my story about donating a kidney to my son in 2006, I was a bit uncomfortable with their description of me as an advocate for … Continue reading A Donation Advocate by Any Other Name
Ever hear of the Immunosuppressive Drug Coverage for Kidney Transplant Patients Act? I didn’t think so, but we need to make sure that members of Congress hear about it. You already may know that virtually all (yes, I know of one exception) kidney transplant patients, unless they got the new kidney from their identical twin, … Continue reading Covering Anti-Rejection Meds Should Be a No-Brainer
My last post, “Kidney Swaps and Vouchers and Chains, Oh My!” got a very positive reaction. It was a real feel-good story about a living donor I know who made a new kidney possible for her son even though she couldn’t donate to him directly, thanks to a voucher system. Several people outside the kidney … Continue reading Kidney Vouchers Are Even Cooler Than You Thought
I was delighted to hear from fellow WELD (Women Encouraging Living Donation) member, Michele Hughes, that her son Dan had just had a successful kidney transplant, at New York-Presbyterian/Weill Cornell Medical Center. Like me, Michele had wanted to donate her kidney to her 20-something son with kidney disease. In their case, though, it wasn’t possible. … Continue reading Kidney Swaps and Vouchers and Chains, Oh My!
I hope everyone knows that no one is too old in principle to be an organ donor when they die. And that’s becoming truer of living donors, too. When I donated my kidney to my son 13 years ago I was 58, which is hardly ancient (actually, it seems downright young to me now!) but … Continue reading New Record: 84-year-old Living Kidney Donor
I first met Brenda online a couple of years ago through a Facebook living donor support group. We were both so moved by having donated that we became strong advocates for donation awareness and went a step further in deciding to write books about donation (hers for young children, mine for adults). I was excited … Continue reading Howl the Owl and Brenda Cortez Help Kids Grasp Organ Donation
It’s hard to overstate what a big deal this is. I hesitated to post anything on it till I’d had a chance to digest it and try to learn if it’s as great as it seems. Frankly, even if it’s less than it appears—some of it rests on the continuation of the Affordable Care Act, … Continue reading White House Kidney Health Initiative—Wow!
So glad that ABC News (WTVD) did a piece on Betsy Crais’s need for a second transplant (see the video), as I described in a post about my book’s co-author last month. Betsy initially thought she had four possible kidney donors in her immediate family. A few weeks ago she received a call from the … Continue reading Betsy’s Need for a Donor Makes Local TV News
Thirteen years ago this week, my son and I went into UNC transplant center with four kidneys between us. When we left a few days later, we still had four, but he had most of them. He still does. I’ve written here and elsewhere about “our” story, so this is his chance to share his … Continue reading Transplant Anniversary: Notes from My Son (My Recipient)
I really hoped I would never need to write this post. If you’ve checked out my story or many of my blog posts, you know that Betsy Crais, the co-author of my book in progress* and a dear friend, is a kidney recipient from a live donor. Betsy had her transplant 15 years ago and … Continue reading 15 Years Is Not Long Enough!
After a terrific workshop for kidney patients and their families and friends on Sunday, I was initially inspired and encouraged at all the valuable resources and options available for finding a donor: paired donation (aka “kidney swaps”), social media vehicles for spreading the word, financial assistance for travel and lodging, and sophisticated fundraising plans. These … Continue reading The Big Ask, The Big Give
In my last post, I shared how the idea for our book came about and promised some information on what’s inside and why. Our ultimate goal in writing The Greatest Gift: The Insider’s Guide to Living Kidney Donation, of course, is to highlight the desperate need for living donors and to encourage people who might … Continue reading The Greatest Gift: What’s Inside?
As you may know, some of the information for this site comes from the book The Greatest Gift: The Insider’s Guide to Living Kidney Donation, which I am writing with Betsy Crais, a live-donor kidney recipient. As we come into the final lap of the book’s marathon preparation, I thought it was time to share … Continue reading How “The Greatest Gift: The Insider’s Guide” Idea Originated
Though the idea was uncharted territory for him, this proud husband describes in a moving article how he came to see his wife’s selfless decision as natural and logical.
May 20 was a big day. The committee that advises the federal agency with the power to expand financial aid to living donors held a meeting and heard a dramatic plan from the National Living Donor Assistance Center (NLDAC). The plan would not only markedly expand eligibility but would extend coverage for significant living donor … Continue reading Expanding Aid to Living Donors: Dear Committee Members
When living donors (women) and transplant professionals (men and women) get together, what do they talk about? Well, if a recent meeting of a local WELD (Women Encouraging Living Donation) chapter at my house is any indication, assorted animated discussions could cover the following: Spreading the word of the urgent need for living donors to … Continue reading WELD-What Do Living Donors and Transplant Folks Talk About?
You may already know that the costs of the donor testing and surgery are covered by the recipients’ insurance. That’s true whether they have Blue Cross or any private insurance, Medicare, or Medicaid (usually—every state is different). That’s great, right? Absolutely, particularly if you have adequate paid sick leave and no additional childcare or travel … Continue reading Good News for Living Donors: Financial Assistance!
Now that April is over, so is Donate Life Month. No more special themed events, signs, and PSAs. But the need for organ donors is hardly over: about 114,000 people are still spending years on national waiting lists for a lifesaving organ. Even though it’s at an all-time high, organ donation still falls way behind … Continue reading Who Says Donate Life Month Is Over? It Needn’t Be!
True or false? 1-People with kidney failure have dialysis every few weeks. False—For hemodialysis at a dialysis center, the standard is 3 times a week; patients who have some form of dialysis at home may do it 4 to 7 times a week. 2-Dialysis sessions usually last 3 to 4 hours at a time. True—The … Continue reading Donate Life Month Quiz: 5 True or False about Dialysis
Woohoo! Got my commemorative living donors rally tee shirt in the mail, and it has my name on it with the other Guinness record holders! If you zoom in, you just may be able to find my name in the upper left quadrant–alphabetized under “C.” What a memorable weekend that was! Several living donors gathered … Continue reading Guinness Living Donors Record!
Here are a few important “facts” about organ donation. Test yourself—and let me know how you did! (Not to worry–I’ll grade on a curve.) 1-Most of the 113,000+ people on the national waiting lists for an organ from a deceased donor are waiting for a heart. False. More than 80% of them are waiting for … Continue reading Donate Life Month Quiz: 5 True or False
In my post last week, I explained some of the enormous benefits of a live vs. deceased-donor kidney for the recipient, but did you know that there are real benefits to the donor, too? For family members or couples, they are nothing short of dramatic: 1-To see a loved one who’s been pale, weak, and … Continue reading 5 (Big) Benefits of Live Donation–for the Donor
As part of National Donate Life Month events, I joined Donate Life NC exec director Deanna Mitchell Sunday at Rush Cycle in Morrisville, NC. In keeping with the month’s theme of Life Is a Beautiful Ride, Rush was offering free cycling classes and gave us a prominent spot to talk about organ donation and share … Continue reading Donate Life Month Fun
If you have a loved one or acquaintance who needs a kidney, you might be wondering why there’s such an emphasis on finding a live donor. Aside from the inescapable reality that there simply aren’t enough deceased-donor organs available (more than 100,000 Americans are waiting for one), live donation offers very real advantages. Here are … Continue reading 5 (Big) Benefits of a Live vs. Deceased-Donor Kidney
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 … Continue reading A Donate Life Month Quiz
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 … Continue reading April Is National Donate Life Month!