Kidney for Life? “Eplets” Is the Key Word

One of the biggest myths about a kidney transplant is that it’s a cure for kidney failure. A new, healthy kidney–problem solved, right? Alas, that’s hardly the case even though transplant is the gold standard for the “treatment” of kidney failure (far better than dialysis). The better the match, the better the person’s overall health, and the patient’s diligence in safeguarding that kidney, the longer the new kidney will last.

Statistically, that’s an average of 10 to 15 years for a deceased-donor kidney and 15 to 20 for a living-donor kidney. Statistics and averages never give the whole picture, so, fortunately, many kidney recipients have been able to keep their transplant for 25, even 35 years or more.

The National Kidney Registry has a mission not only to increase the number of kidney transplants and improve the matches, but to work toward a long-lasting transplant. Last year I attended a fascinating symposium on important research and developments in donor-recipient matching, sponsored by the National Kidney Donation Organization, or NKDO. Invariably one or two strong takeaways emerge from any important presentation. This time it was a single word and dramatic new concept for me: eplets.

They’re the key to what NKR calls the “Kidney for Life Initiative.”

After the symposium last year I wrote a blog post on this game-changing concept of low-eplet mismatch. The rest of this post is mostly excerpted from that one.

It turns out that compatibility is way more nuanced than I ever imagined. You may have heard about HLA antigens (you know, the 6-out-of-6 match being the so-called “perfect match”?) . Well, apparently, “matching” antigens may look the same, but they differ by their eplet pattern (think of them as “immunologic hot spots”).

Fair warning: I am not a transplant surgeon, a scientist, or a medical writer, so please do not quote me on this. Rather, use the occasion to go ask someone who is–or, better yet, google Kidney for Life.

Dr. Dorry Segev, NYU Langone transplant surgeon (photo by Carol Offen)

I’d seen the word eplet on charts and even heard it referenced at the NKR Gala presentations the night before. I got the basic gist from the context, but it wasn’t until Dorry Segev, transplant surgeon at NYU Langone, explained it so well at the symposium that I “got it.” From what I understand, it’s time that potential donors and transplant recipients started using the term, as in “Do you test for eplets?”

Yup, Dr. Segev says “everyone should ask” that before a donation/transplant, so if you’re a donor candidate be sure to add it to your list of questions. Not all transplant centers do the necessary “high-resolution typing” that can see how many eplets are in the antigens. The number of eplet mismatches can make the difference between a kidney transplant that starts to deteriorate months later, and leads to rejection, and one that can conceivably last “for life,” requiring a lower level of immunosuppressants.

Wow–what a potential game changer! Though “eplets” are new to me, and probably to you, they’re hardly new to transplant professionals, who have been studying this “latest generation in DNA sequencing technology” (per the NKR website) for years. Dr. Segev thinks that within about five years, we’ll all be talking about eplets. I know I will and I hope you will too.

If you’re sufficiently intrigued now and wonder if waiting for that “low eplet mismatch” is really worth the wait, here’s Dr. Robert Montgomery, director of NYU Langone’s Transplant Center, explaining why it is worth waiting a little longer for an ideal match.

For related posts, resources, and information on The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

A Very Productive Day on Capitol Hill

I just figured out that I’ve now participated in more than thirty advocacy (aka lobbying) meetings for the kidney community, mostly at the federal level. My recent meetings in DC for the National Kidney Foundation’s Kidney Patient Summit definitely stand out. I thought I’d share some observations.

At their worst–perish the thought!–such meetings risk being dry, one-sided recitations of our “asks” (often cosponsoring legislation, signing on to a letter, voting to increase research funding) while a well-meaning but harried staffer listens quietly, taking notes, followed by our rushed awkward efforts to “tell our stories” before the staffer, obviously distracted by more pressing obligations, moves to end the meeting early.

Fortunately, the only ones I’ve ever had that were close to that scenario occurred years ago on Zoom, because of COVID, often without video. (I kept hoping that the disembodied voice was more engaged than it sounded and wishing desperately for a little eye contact to have a better idea if our message was “getting through.”)

At their best, though, such as one our North Carolina team had recently with a seasoned Senate staffer, Garrett Daniel (Senator Thom Tillis’s legislative assistant), they can be exhilarating. Here are a few illustrations.

Instead of being one sided, they’re natural interactive conversations that happily go off script. I’d been in several excellent Zoom meetings with Garrett since 2020, but this was our first in-person meeting. He’s always engaged, well informed, and often alludes to other ideas in the senator’s pipeline–such as a plan for a framework for paid leave for caregivers–that dovetail with our efforts.

LA Garrett Daniel, standing next to name plaque, with our NC team this year (left to right: Alan Levy, me, Wendy Glod, Dre Roundtree, kneeling, and his wife, Necole Roundtree.

We all participated in the lively discussion, often, in response to his questions, mentioning additional aspects of our asks that we hadn’t touched on in our elevator pitch. After hearing comments from a kidney transplant recipient’s wife, Garrett was the one to raise the subject of the burden on the caregiver not just in the home but in terms of job issues.

He listened to our personal stories and then often gently asked questions to get a clearer picture of what our experiences entailed. In fact, when he prompted one of our team members to elaborate on her long journey to get a kidney transplant, she shared important and wrenching details that the rest of us hadn’t heard.

Because her insurance company would only cover her numerous appointments for essential tests if she went to a center three hours each way from her home in Charlotte–instead of one just fifteen minutes away–she had to wait more than two years before she could move ahead with the transplant she desperately needed. Then, after she went through all her testing and was just one test away from being listed for a transplant, she got a peritonitis infection–so the transplant was further delayed.

At the end of the meeting, in addition to concern, Garrett also offered critical pragmatic support. For example, Senator Tillis is already a cosponsor of the Living Donor Protection Act, so our ask in his case was to help us get a committee hearing for the bill. Garrett’s boss is not on one of the committees in question, so Garrett offered to reach out to his counterparts in the office of NC Senator Budd (who is) to bolster our efforts. He planned to do the same with other offices regarding another bill the kidney community is supporting, to help expand access to home dialysis.

It was late afternoon when we left the office, and in between meetings we’d been walking up and down long, imposing corridors and all over Capitol Hill for hours. Our feet hurt. But after meetings like this, everyone on our team left feeling energized.

For related posts and information on my book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

Transplant Anniversary: Notes from My Son (My Recipient)

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 perspective on this momentous experience, which had begun 2 years earlier.

Thirteen years ago I received a kidney transplant from my mother. I appreciate this kind act, but knew she would not disappoint. I also am glad to know that she has benefited from this act, and has become an activist for living kidney donation.

Here’s some background: when I was in college, I was diagnosed with IgA nephropathy. It was discovered in lab work after I had gotten sick with strep. Years later I learned that that was often a trigger for my type of kidney condition. I had no symptoms, though, and was otherwise healthy—I didn’t have diabetes or high blood pressure, which are common causes of kidney failure—and I was thin, with no family history, so the nephrologist said it was something to monitor and take seriously, but wasn’t expected to get much worse, at least not in the foreseeable future. I had regular lab work throughout college.

At my first post-college appointment, the blood test results showed that my kidneys were failing; I learned I would soon need dialysis and then would have to be on it until I could receive a kidney transplant. The doctor first told me I might have to start dialysis in a year, but it ended up being only 3 months. I had just graduated college, and I was nervous but hopeful about the future. Before that appointment I had no idea I had kidney failure, let alone that I’d be on dialysis in 3 months.

Dialysis was the worst experience of my life. It began with two painful insertions of needles into my arm, followed by being connected to a dialysis machine 3 hours at a time 3 days a week. With prep time and post-time, plus another hour for transportation, it was more than half a day. When I got home I just didn’t feel like doing much of anything. I didn’t feel like myself and couldn’t relax. I had time for little else. I felt like my life was under a microscope.

My parents began the process of applying to be donors. My dad was eliminated for having had a kidney stone and my sister was too young at the time. My mom made it through the first round, but the hospital wouldn’t allow her to begin the actual testing because I did not have health insurance that would cover the donor, which is usually part of the recipient’s insurance. Because I was no longer a full-time student, I wasn’t covered by my parents’ health insurance. Had the Affordable Care Act been in effect then, since I was under 26 I could have remained on my parents’ plan. Medicare has an ESRD category for kidney failure patients, but it required a certain amount of “work quarters” to qualify. This was particularly upsetting because having just been in college and now with my health suddenly failing, I didn’t yet qualify. I then had to earn work quarters while on dialysis, which limited how much I could work.

I felt horrible about the awful luck that put me in this situation. I was angry at a health care system that puts such policies in place. I believe I have a right to health care. Had insurance not been an issue, I could have spent 1 year less on dialysis and gotten my transplant a year earlier. And if, instead, my kidneys had failed a year later, this policy might have been moot because I probably would have earned enough work quarters by then.

Meanwhile, for more than a year my family made countless phone calls and wrote pleading letters to the hospital and anywhere we could, hoping I could somehow get a transplant soon. After a lot of advocacy, the hospital finally agreed to take on the costs and allowed my mom to begin the testing. It even agreed to pay for the donation surgery itself if Medicare did not come through, but I accumulated enough work quarters by then.

Paul and my husband, Neil, with me at the 2016 Triangle Kidney Walk in Durham, NC.

I knew that if my mom couldn’t donate to me, there were no other potential donors at the time. So I was really crossing my fingers after each of her tests, knowing that she could be disqualified at any point.

I checked into the hospital the day before the transplant and had dialysis there. When I prepped that night I was mistakenly told I could use the special soap for my hair, and it got in my eyes. They were still stinging the next morning, which naturally increased my nervousness about the transplant.

Transplant day finally came after 1 year and 8 months of dialysis. I vaguely remember being wheeled into intensive care after the surgery. From what I could tell, the doctors thought it had gone successfully. When my dad and sister came in to see me and asked me how I was, my response was “could be worse.”

I recovered at my parents’ house for more than a month. I still had several things attached to my body. I had frequent doctor’s appointments and usually would have something removed/disconnected each time: a stent one day, a catheter another. Slowly, I began to regain my life and at a point feel like I did before the transplant and then, eventually, feel better than I had on dialysis.

By no means is being a transplant recipient easy—there are a lot of things to keep track of, like medicines, appointments, protection from getting sick. There will always be potential hazards, and I’ll always need to take extra precautions. I check expiration dates a lot more closely than before and cancel get-togethers with family and friends if one of them is sick even with a cold. My immune system will always be suppressed to keep it from rejecting my mom’s kidney.

But life as a transplant patient is so much better than the traumatic experience I went through as a dialysis patient. –Paul Offen, Chapel Hill, NC

For related posts and information on my book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

15 Years Is Not Long Enough!

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 had been doing really well until the last several months.

I am so sad to say that Betsy’s kidney function has declined to the point that she now needs another transplant. I’ve always said that Betsy was the poster child for living a full and productive life with a kidney transplant: not only does she work full time as a university professor and researcher, shunning retirement, but she’s active on grant review panels, committees, and national organizations–on top of being a devoted wife and mother and a lovely person (not to mention a co-author and a donation advocate, of course).

Because Betsy, like her mother and two of her sisters, has polycystic kidney disease (PKD), her two adult children are at risk of developing it themselves. They can’t be considered as donors until they’re well into their thirties, when the disease typically manifests itself. Betsy had fervently hoped to avoid dialysis, but in the absence of a living donor for now, she is having an access port put in soon and expects to start dialysis this summer.

If you know anyone who has ever remotely considered donating their kidney (or maybe the idea of doing it yourself is what brought you to this site), please contact me (carol.kidneydonorhelp@gmail.com). I’ll provide the contact info for the donor nurse coordinator at UNC Hospitals. Betsy is blood type A, but as you may already know, these days it’s not essential to have a matching blood type (see the FAQs). There are lots of options now.

Thanks for anything you can do to help spread the word!

*The Greatest Gift: The Insider’s Guide to Living Kidney Donation.

How “The Greatest Gift: The Insider’s Guide” Idea Originated

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 its origins with you.

Betsy and I met nearly two decades ago when our daughters were in the same Girl Scout troop (we bonded when we shared a pup tent during a camping trip). Some years later we discovered that we also shared a passion for encouraging living organ donation, which has resulted in this book.

the 2 authors, women, sitting in front of a sign that says "Ask the Expert" — Elizabeth (“Betsy”) Crais, left, and me at the University of North Carolina’s Live Donor Champion program, Chapel Hill, NC, on March 24, 2019.

How did we go from tent-mates to co-authors? I’m glad you asked. Read on.

When Betsy first faced declining kidney function and had to consider dialysis and ultimately a transplant about 15 years ago, the only books she found to inform her were renal-focused cookbooks or medical texts about kidney diseases, with short chapters about her condition (polycystic kidney disease, or PKD). There was little available on what to expect before and after dialysis or transplant, and certainly nothing that delved into topics related to emotions or family relationships.

Fortunately for Betsy, she at least could talk about her disease with her mother and two of her siblings, who also had PKD. Through them, she could at least get some of her personal questions answered. Later her sisters also came to help her when she had her surgeries. Although her siblings’ care was a great blessing, the best part was having someone there who had been through the experience and could guide her expectations.

In contrast, when I faced the opposite situation a couple of years later—contemplating being a living donor for my 25-year-old son, Paul—I knew no one who had donated a kidney. I had dozens of questions and could ask the professionals some of them but had no one to advise me who’d been through the experience. For Paul’s questions, fortunately our family could call on Betsy, who talked to Paul to help allay his and the rest of the family’s concerns. Most important, Betsy shared some encouraging examples of how her quality of life had improved post transplant compared with her time on dialysis.

Not long after Betsy’s transplant and recovery, she began thinking about her difficult experiences and the silver lining of having family members with PKD who could be her own invaluable support group. The awareness that most people, like me, do not have that critical support prompted us both to want to write a book that could help others be more informed about what to expect in the donation and transplantation processes. Both of us had been surprised and frustrated to find so little practical, nontechnical information and support in those pre-Google days.

Early on Betsy drafted an outline and started thinking of people who might contribute various chapters, and Carol wrote an occasional op-ed piece on being a living donor. But because of day-to-day obligations it would be several more years before Carol reached out to Betsy to talk concretely about an idea for this book.

Neither of us knew that the other had already been thinking along the same lines.

Next time I’ll provide some specifics about The Greatest Gift: The Insider’s Guide to Living Kidney Donation and share with you our goals for the book.