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 wait till you died?!”

In my own experience as a donor (and mother of my recipient), moments that didn’t seem remotely funny at the time have since emerged as gems. Example: A young technician did an ultrasound to try to locate my adult son’s internal bleeding a week after his transplant. After the surgeon and radiologist came in and concluded that he needed exploratory emergency surgery, everyone headed out somberly. The tech sent them on their way with a perky “Have a nice day, y’all!”

Photo by Teona Swift on Pexels.com

Then there was the time, while my son was recuperating from the surgery at our house and I was being super careful to protect him from exposure to germs. I’d hidden my bouquet of flowers in our bathroom and thought everything was going great–till I discovered that he and our teenage daughter had unwittingly been sharing a toothbrush for a week.

If you have some real-life donation-related chuckles to share, please let me know!

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 episode, Living Kidney Donation: The Greatest Gift. It was exciting to hear a radio host say for the first time, “We’re talking with Carol Offen, co-author of The Insider’s Guide to Living Kidney Donation.

Just as exciting–and far more significant–was that a popular live radio show was devoting 31 minutes of airtime to talk personally and informally about kidneys and living donation: vitally important subjects that deserve lots of attention.

The host, Lesley McClurg, asked me to share my story of donating my kidney to my son nearly 15 years ago. That I would donate again in a heartbeat is a testament not only to the dramatic difference it made in his life, but in my own as well. It’s an extraordinary feeling to know that you’ve enabled another human being–whether a loved one or a stranger–to live a fuller, normal life. The experience made me passionate about raising awareness of living donation and chronic kidney disease.

I was honored to share the Zoom stage with Dr. Nancy Ascher, a prominent UCSF transplant surgeon (for starters, she’s the first woman to transplant a liver) and a living kidney donor herself. It was great that she could speak to both the medical and the emotional aspects of donation, and the host engagingly integrated our overlapping perspectives.

I was surprised to hear Dr. Ascher say that she hadn’t thought about the risks when she made her decision to donate to her sister. In retrospect, I realized that, even though I’m a wimp, I didn’t really think about those things either (though I strongly advise prospective donors to fully inform themselves). Sure, I was scared, but I was just as freaked out about the battery of tests for the donor evaluation as I was about the surgery.

The Forum is a morning call-in show, and several listeners shared their own stories of donation or transplant. Some were very powerful. I’ll never forget the gentleman who called to thank Dr. Ascher for performing a liver transplant 20 years ago that gave his wife 17 additional years of life. His voice broke as he described the special experiences she’d enjoyed during those gifted years.

A kidney recipient, Tameez Sunderji, also joined the show to tell about receiving a kidney from his sister eight years before. His kidney failure, like so many others, was discovered by chance before he had any symptoms. He was very fortunate to be able to have a preemptive transplant–that is, before he ever needed dialysis. Both he and his sister are doing well.

A few other callers who were living donors themselves described their active lifestyles since donation and what a gratifying experience it had been for them. Some listeners called in to ask Dr. Ascher whether they could be donors despite being over 60 and whether insurance would pay for a mother-daughter liver transplant (short answers: yes, if very healthy; yes, recipient’s insurance pays for both).

A couple of months after participating in a podcast episode on transplantation, I was blown away when a Facebook commenter told me that “Your story on This Podcast Will Kill You was the final push I needed to register to donate. I find out today if I’m approved! THANK YOU!!!!” I teared up when I read it, of course–and even moreso a few hours later when she announced that she’d been approved to be a nondirected donor (for someone she may never meet).

I like to think that learning about the compelling need for living donors and hearing our personal, candid stories on The Forum spurred some listeners–including host Lesley McClurg–to consider the idea of being a living donor in a new, encouraging light.

“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.

Just the week before, she and her husband were en route to the beach, nearing the end of a 3-hour drive from home, when she also got the call. They excitedly turned the car around and headed back, arriving at the hospital a few hours later. She knew there was a chance she might not get those organs, because she was cautioned that she was an alternate in case the primary candidate wasn’t an acceptable match. The main candidate was fortunate that day, and Betsy went home empty handed, so to speak.

Still, it was very encouraging to get that close, after fearing that a second transplant could be years away for her. Thankfully, this time Betsy was the primary candidate and was a good match.

Recovery will take time, but Betsy always has her eyes on the prize, and she’s mainly thinking about getting stronger, leaving dialysis behind, and enjoying an infinitely better quality of life. She’s also looking forward to finally taking that beach trip or a mountain getaway this summer. In the meantime, she’s “coming along slowly but surely.”

And I sincerely hope that the grieving donor family somehow knows, as I do, that Betsy will take excellent care of their loved one’s precious organs.

This was taken at a National Kidney Foundation patient workshop we spoke at a few years ago, when Betsy’s first kidney transplant was still going strong.

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 former colleague Barbara Williams Ellertson is a special bonus. Barbara gave me my first job in book publishing at a small press, back in the 1980s. Before then my experience was in magazines and in feature writing, so book publishing was a whole new world. Barbara set the high standards that stayed with me.

I’ve been thinking about those days this week as I find myself, decades later, navigating digital page proofs of the book when I long for the comfort of galleys and repros. (On the other hand, I never would have been able to share the cover this way back then!)

In recent years Barbara and I have each followed our passion. You know about mine, of course: advocacy for kidney donation through this website, the upcoming book, and activism. Barbara’s passion combines her love of books with her love of art history, and she’s made a significant contribution to the field with the BASIRA (Books as Symbols in Renaissance Art) Project.

The Insider’s Guide to Kidney Donation will be out this summer and I hope will have a lasting impact, as will the BASIRA project. It’s funny where an idea, a passion, and a long reach can lead.

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 still aren’t real options. Yes, he’s fully vaccinated, but the big unknown is whether he’s fully protected. His immune system, tamped down to coexist with his precious kidney, which used to be mine, doesn’t quite get the difference. That means it might not be protecting him the way it does most people following vaccination.

Photo by Alena Shekhovtcova on Pexels.com

According to new studies by researchers at Johns Hopkins, about half of transplant recipients developed antibodies to COVID following the requisite post-vaccination period. That’s the good news. The bad news is that half didn’t. And even those who did, usually produced far lower levels of antibodies than someone with a typical immune system.

Researchers are looking into the other ways the body can protect itself (B cells and T cells, for example), additional options like a third shot, and much more that I don’t understand. But in the meantime, the bottom line is that unless a given transplant recipient is confirmed to have an adequate level of antibodies, they should behave as if they’re unvaccinated–that is, they may still be vulnerable. After the long months of waiting his turn to get the vaccine, and then counting down to the full-protection stage, the news was heartbreaking.

I guess it shouldn’t have come as a surprise to me, but I honestly don’t recall ever hearing or reading any cautionary statements on that point. The focus, understandably, was on safety: it’s safe for transplant recipients to get the vaccine because it’s not a live vaccine, and the known risks of kidney patients’ developing a severe case of COVID are far worse than any risks of the vaccine. I echoed that advice here too.

For now, the best protection against COVID for my son and other transplant recipients–or anyone with a weakened immune system–is for the rest of us to be fully vaccinated. If you are not vaccinated, please honor the honor system and continue to wear your mask and to social distance. At-risk people like my son need to continue to take the old precautions. So the next time you see someone wearing a mask in public, don’t just assume that they’re not vaccinated. That person may well be fully vaccinated–but still not fully protected.

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 of a living donor later needing a kidney transplant.

Apparently, that surprises people, particularly living donors. My post on the subject received the highest number of views of any of my posts. Needless to say, the news made a lot of people, including me (now nearly 15 years post donation), very happy and eager to share the good news.

Photo by Andrea Piacquadio on Pexels.com

“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 several episodes I’d missed, a major public health campaign came along last month (National Kidney Month), and I was delighted to see B Positive in the spotlight.

B POSITIVE stars Thomas Middleditch and Annaleigh Ashford encourage people to consider becoming a living kidney donor in a new PSA produced by CBS and the OneLegacy Foundation. (Photo: Business Wire)

CBS teamed up with One Legacy Foundation to raise awareness of living donors, with BelikeGina.org. A brief PSA featuring the show’s two stars directed viewers to the site, which provided facts and personal stories about being a kidney donor. The site had links to several organizations that partnered for this wonderful effort. The result was an array of thorough information for everyone from the curious to the fully committed–and most people in between.

Dozens of the people who clicked on the link actually filled out an interest form about living kidney donation (the link is still live)–and a few even began the process to donate their kidney. Not bad!

Getting back to the sitcom itself: I’m happy to report that I think the writers have come a long way. So, does it earn a B+? You tell me.

First of all, the characters are much more multidimensional than they were in those first few episodes. Drew shows even more vulnerability. Over-the-top Gina, though still zany, has become more nuanced. Even Drew’s dialysis mates have fleshed out as real people. The aloof, cynical Samantha now occasionally shows a softer side; Jerry is more relatable; and Eli, the former NFL star, shows that he cares about more than his championship ring. In short, they are no longer reduced to punchlines.

I’m also glad to see that Dwayne, the flamboyant gay dialysis tech who typically has one-liners, is capable of rising to the occasion. We’ve seen him react responsibly and even empathetically when his patients needed that TLC.

I’d initially criticized the seeming routineness of Drew’s dialysis sessions, but a few scary and realistic events occurred and became teachable moments. They led to a terrific double episode that combined some realistic consequences of missing dialysis with hilarious sitcom humor.

No, kidney failure isn’t funny, but people in most any situation can do and say funny things. I, for one, am glad to see viewers exposed to–and yes, laughing about–some of these unusual but important topics. They’re more likely to remember what they “learned.” Yes, the show is still uneven, but what series isn’t? I look forward to more episodes.

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 need them in this country (more than 100,000 people are waiting for a kidney–most of them for several years).

You may also have read here and elsewhere that living donors represent the best option for people with kidney failure. They are usually better matches, typically last longer, and have better outcomes than kidneys from a deceased donor. But if you’re in need of a kidney, you may be wondering just how to start what is euphemistically referred to as “the conversation”–for the biggest ask of your life.

Let’s face it, people who have trouble asking for a ride to the airport don’t even begin to know how to ask for a bodily organ.

The good news is that you don’t have to ask. People who have succeeded in finding a kidney will tell you that the key is just to make it known that you need a transplant and provide basic information. Ask everyone you know to simply spread the word–whether by email, social media, in person, or shouted from the rooftops.

Photo by Kaboompics .com on Pexels.com

Granted, for some people, even this ask can be very challenging. A lot of people don’t like to draw attention to themselves and especially not when the focus is on their being in need. But viewing it as an opportunity to educate people about kidney disease and living donation may help make the quest more palatable and certainly meaningful.

The other piece of good news is that you also don’t need to figure it all out on your own. The National Kidney Foundation, among other organizations, offers workshops and resources to guide you. The Living Kidney Donor Network, founded by two-time live-kidney transplant recipient and active donation advocate Harvey Mysel, created a program called “Having Your Donor Find You.” LKDN is a nonprofit dedicated to educating both the public and kidney patients about living donation. Its online program consists of a series of helpful videos, so you can take advantage of it no matter where you live–and it’s free.

When I donated my kidney to my son in 2006, ours was an obviously compelling situation. Since then though I’ve encountered many living donors who had no objective need or pressure to take action. They simply learned of a story of need that touched them and made them want to step in. That’s where social media and old-fashioned, low-tech word of mouth come in.

Some people even choose to donate to an unknown recipient whom they may never meet, initiating a swap or a chain. Multiple transplants are the awesome result. Paired donation and all the exciting variations weren’t available back when my son needed a kidney. They open up extraordinary possibilities today!

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 donate is extremely important, unfortunately, it’s not sufficient to meet the need. That’s why I’m an advocate and the reason I created this website: to encourage and support people to consider living donation.

This year for the first time, Donate Life Month includes a special day to salute living donors: April 7 is Donate Life Living Donor Day! The large photo below–the same one that graces the front page of this website–was taken almost exactly three years ago at the Bean in Chicago. We were quite a mixed bunch, mostly kidney donors but a few liver donors as well–such as the woman from India who donated to her husband (they were there with their two beautiful children, in fact). That weekend I met donors of all ages and regions. Some had given to family members, to friends, to someone they barely knew, and several even gave to someone they’d never met and still hadn’t years later. It was an inspiring, emotional, and extremely fun weekend.

Living Donors Rally, April 21, 2018, in Chicago–we set a Guinness World Record for largest gathering of living donors! Do you see me?

In addition to adding to the number of available organs, living donation has several bonuses. Having a living donor typically produces a better outcome for the patient. It’s usually a better match, the surgery can be scheduled under optimal conditions, and, most important of all, it lasts longer. For a kidney recipient, that can be double the lifespan they might have after a transplant from a deceased donor. And even though living kidney donation is definitely major surgery, virtually all donor surgeries are done with minimally invasive laparoscopic surgery, which makes a big difference in both pain and time to bounce back. It was much easier than this self-described wimp had ever expected.

Another bonus: every time someone who’s on the national waiting lists for a deceased donor finds a living donor and is removed from the list, that obviously shortens the list accordingly. So, in addition to helping the recipient, donors are indirectly helping countless others as well.

So here’s to you/us living donors! Please think about learning more on the subject, ask questions, think some more, and consider joining our ranks. Studies find that the vast majority of living donors have no regrets. I know it was the proudest day of my life.

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 this blog post to that unsung hero, my remaining kidney.

It (he? she?) has worked solo ever since its partner moved to my son’s body so many years ago. Is it lonely? Does it feel abandoned, I wonder.

I’m a bit ashamed to admit that she (yes, I’ve decided it’s a she) doesn’t even have a name. After an informal contest among friends and family, my son’s (formerly my) kidney was dubbed the Comeback Kidney.

But my righty has never clamored for attention or tried to claim the spotlight from her perch above my waist toward the back. She’s been doing a masterful job, taking up the slack ever since her partner upped and left, with nary a complaint.

Initially, as was expected, I lost 25% to 35% of overall kidney function. But my little fist-sized pal gradually got a little plumper, and my kidney function built up to a normal level. As I’ve written before, even if she hadn’t managed her own “comeback,” a slightly higher new normal for a living donor is just fine.

Not only did she rise to the task, in fact, she exceeded expectations. Filtering waste from my blood, reflected in creatinine level, is probably her biggest job.  A “normal” creatinine reading for most women is under about 1.0. At my last check-up, mine was .75, enviable at any age. Even my GFR, a formula that uses creatinine plus age, sex, race, and weight to estimate overall kidney function, is an impressive 80 (anything over 60 is normal). It’s common for anyone’s kidney function to decline with age, so at 72, I’m very proud of that reading.

If keeping toxins out of my blood were all that she did, I’d still be justifiably proud of her. But she does so much more. She keeps my blood pressure down, removes extra fluid, makes urine, balances nutrients, makes red blood cells to keep me from being anemic… I could go on. Think about it: she’s been doing all that alone. You’d never know it from my lab work, of course, which would be impressive for a healthy nondonor of any age.

Thank you for all that you do, righty! (True, it’s not the most original name, but I think I’ll use it till I can think of something more creative.)

I’ve never seen a lung-shaped swimming pool, have you? Or a pancreas bean? Other than the heart, can you think of any bodily organ that’s so recognizable and endearing enough to inspire cuddly plush toys? Obviously, there’s good reason for that honor.