Should Kidney Recipients Take the COVID Vaccine–and When?

This week I attended a National Kidney Foundation webinar that answered questions about kidney patients and the COVID vaccine. As the mother of a kidney transplant recipient (my recipient, actually), I naturally have a particular interest in the topic. As a living donor, though, it doesn’t appear that I have any reason to need or receive priority for a vaccine. Yes, I have just one kidney, but it’s doing a great job and I’m otherwise healthy. Most living donors can say the same.

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As far as transplant recipients, though, the need is clear. They are at greater risk of developing serious complications if they get COVID. Unfortunately, the vaccine trials did not include transplant recipients or people who are immunosuppressed.

That makes it reasonable to ask how the scientists know that the vaccines are safe for chronic kidney patients. Given that it’s not a live vaccine and that the research builds on similar research that goes back a lot farther than the less-than-a-year in which the COVID vaccines have been developed, are valid reasons for optimism.

Still, some say, yeah, but they don’t know for sure. To answer that, most health authorities point to the unknown additional risks of the vaccines vs. well-known risks of COVID. Put another way, they believe that the known benefits of the vaccines far outweigh the known risks of developing severe complications from COVID. On balance, I’d say the argument for taking the vaccine wins hands down.

In fact, in view of chronic kidney patients’ risk of severe illness from COVID, NKF issued a statement last month calling on federal policymakers to bump up priority for them in vaccine distribution plans. Because infected household members and caregivers would pose a significant risk to these people, the statement urges inclusion of their caregivers and kidney care providers as well.

Kidney patients who receive the vaccines are being asked to provide feedback on their own reactions/experience to offset the lack of specific study-level information. As thousands of people receive the vaccine every day, more and more data will be available for study. Johns Hopkins University is currently doing a research study on the vaccine for transplant recipients.

The bottom line, of course, is that every transplant recipient, every dialysis patient—hell, every patient—is different. Discuss your own health risks with your transplant team, kidney specialist, or primary care provider.

Personally, I’m ready and eager to take the vaccine as soon as they get up to my group (65 plus) in my area. Whether you’re a kidney patient or a living donor, or potentially one or the other, I hope you are, too.

*****

Co-author, The Insider’s Guide to Living Kidney Donation: Everything You need to Know If You Give (or Get) the Greatest Gift, to be published in 2021.

A Look Back at 2020 Posts

It seems that almost everybody does a top-10 of something at year’s end, so why should kidney bloggers be left out? Here are my most-viewed posts of the past year (or thereabouts):

1. Did You Know? Pass It On

Whether you’re a donor, a potential donor, or a kidney patient looking for a donor, here are a few intriguing facts everyone should know about living donors:

  1. 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 is rising…. Keep reading.

2. Kidney Donors Don’t Get Paid, But the Rewards Are Very Real

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 points…. Keep reading.

3. Just How Unlikely Is it for a Donor to Need a Transplant?

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 a transplant themselves, they are given priority on the national transplant waiting lists? That would mean they could receive a kidney from a deceased donor in a matter of weeks or months, not years—thus, probably avoiding dialysis. That’s certainly comforting.

But “unlikely event” takes on a whole new meaning…. Keep reading.

4. Celebrity Kidney Recipients: Please Share Your Stories!

They’re athletes, actors, and musicians of different ages, races, and ethnicities. So, what do the celebrities listed below 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 to find a living donor. Sometimes it’s a biological family member who steps up–sometimes it’s a future or former partner. And sometimes it’s a Good Samaritan, who chooses to donate to an unknown person in need…. Keep reading.

5. Why All the Fuss about Finding a Living Donor?

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 puzzled?

If you have a loved one or acquaintance who needs a kidney, you probably have a good idea of why people might go to such lengths to find a live donor.  Aside from the inescapable reality that there simply aren’t enough deceased-donor organs available in general…. Keep reading.

6. Donors Say (and Get Asked) the Darndest Things

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 of sadness. We turn to one another for advice, practical tips…. Keep reading.

7. Donors: Your New-Normal Numbers Are Just Fine

Being well informed about living donation before you donate a kidney is obviously extremely important, but it doesn’t stop there. Continuing to be well informed is not only good for your physical health but your mental health as well.

Through social media donor support groups, I continue to hear of some donors being told that they have stage 3 chronic kidney disease, purely on the basis of their eGFR (an estimated formula for kidney function). One stunned donor said she cried all night. Before you conclude that her “disease” was a result of kidney donation, I hasten to add that she and other such donors…. Keep reading.

8. Coronavirus, Kidney Patients, and Everyone Else

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 high risk of contracting COVID-19–whether they are transplant recipients, are undergoing dialysis, or contemplating treatment–this is a particularly important issue for all of us… Keep reading.

9. Kidneyversary, No Matter What

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 event every year at this time.

Like everyone else, we had to change a few things this year–even more than you might think because my arm is in a long cast (see photo)…. Keep reading.

10. Wear a Mask! The Life You Save May Be My Son’s

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 infection. With the horrific surge in COVID-19 cases throughout the country and around the world, this is not a theoretical point. When transplant recipients contract COVID, they have a higher risk of severe complications. My son’s immune system just isn’t protecting him enough, but your mask can help…. Keep reading.

Can “B Positive” Earn a B+?

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 misconceptions about kidney disease, donation, dialysis, and transplant.

So far, I’m pleasantly surprised but still on the fence. I give it a B+ for some of the key interactions, like his difficulty processing the news from his doctor that his kidneys are failing; his hesitance and difficulty in telling his 12-year-old daughter that he needs a transplant; his almost-ex-wife’s shock and “surprising” (to him) concern to learn that he needs a kidney. Honestly, they all ring true and have just the right measure of realism and humor. Of course his zany donor’s unorthodox lifestyle and dangerous tendencies drive him up the wall, and his over-the-top behavior in tracking her movements must surely feel tempting to lots of dialysis patients in that situation.

Viewers unfamiliar with the subject of living donation may think it far fetched that anyone would immediately offer their kidney to someone they hadn’t seen in 20 years or so, on hearing of their plight. Obviously, it doesn’t happen very often, but the truth is, lots of living donors who have donated to someone they didn’t know will tell you that they somehow just knew they wanted to do it or felt “a calling.” They read a story or met someone or just heard about someone’s urgent need. So, no, the offer from Drew’s flaky donor Gina, isn’t the problem either.

Where it falls down is in giving the patently false, harmful impression (1) that all you need is a compatible blood type and a warm body, and poof, you too can donate your kidney. Transplant centers make sure that a donor is not only healthy enough to donate but that doing so wouldn’t jeopardize the potential donor’s own health. I don’t remember seeing any reference to Gina’s undergoing an extensive medical evaluation plus interviews with a psychologist. Seems like there’s plenty of room there for both humor and education, given her issues with alcohol and drugs; and (2) that dialysis is anything more than an inconvenient appointment he’s always late for, and where he’s cooped up with vaguely annoying people.

What about the “inconvenience” of being stuck with needles, the lethargy, the dietary constraints of dialysis? Again, the show could still educate with plenty of humor. I can already see Drew trying to resist cravings for forbidden high-potassium foods like tomatoes and bananas and cantaloupes and brussels sprouts.

So…that’s where we come in.

It would be great if everyone with an interest in kidney disease and living donation would follow the show and give feedback to keep it honest. I watched a recent Q&A with the show’s creator, Mark Pennette, whose own experience inspired B Positive. He had a kidney transplant from a living donor 7 years ago and spent 5 months on dialysis while waiting. In the interview, he said, “I really do want to be realistic.” That said, we all recognize that there has to be some dramatic license and sitcom exaggerations and such. But he did say “I really hope we’ve struck a balance between reality and entertainment.”

So let the show’s creator and writers know what you think and hold them accountable. Donate Life Hollywood’s Activate App makes it easy. Here’s a perfect opportunity to make our voices heard. I’d love to see the show succeed, wouldn’t you?

“Good News” on Immuno Drug Bill Is Now Great News!

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 to become law. The Senate has passed it, again with strong bipartisan support, and Trump is expected to sign it.

That means that kidney patients who qualify for Medicare only through the ESRD–kidney failure–category (and have no other coverage) will be able to afford the critical, very expensive, antirejection meds that recipients must take for the life of the kidney. Patients who stop taking their meds because they can’t afford the few thousand dollars a month cost usually lose that new kidney and end up back on dialysis. Many of them die.

Honor the Gift is the name of the most recent ambitious campaign to get this long-overdue legislation passed. Safeguarding the precious gift of life is the best way to honor that gift and save lives. This great news is a big win for kidney patients and advocates–not to mention decency and common sense (it even saves Medicare money).

My fellow National Kidney Foundation kidney advocates and I spread the word about the merits of the immuno drug bill and others when we met with members of Congress during NKF’s virtual kidney patient summit in September. One of the bill’s co-sponsors is my own congressman, Rep. David Price. (That’s him at the bottom of the photo from one such zoom meeting.)

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Good News on Immuno Drug Bill

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 Eligibility Simplification Act of 2020). It now awaits action in the Senate.

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Currently, Medicare drug coverage for people who qualify only through the ESRD–kidney failure–category ends, bizarrely, at 36 months. No, that doesn’t correspond to any medical milestone. Transplant recipients require special meds for the life of the kidney, and this bill applies only to people with no other coverage. It’s been in the works for a few years now even though it would seem to be a no-brainer.

By ensuring that all patients can afford their critical (and expensive) anti-rejection meds, the bill saves both lives and money by safeguarding the health of the transplanted kidney. Incidentally, when we lobbied members of Congress about this in September, the estimated savings (through reducing the need for more costly dialysis) was thought to be $73 million over 10 years. The official Congressional Budget Office projection is now $400 million savings to Medicare over 10 years!

So, please tell your senators! Anyone who had been unswayed by the compelling moral argument and previously thought respectable savings should now be persuaded by the revised, equally compelling, economic argument. Why risk jeopardizing anyone’s precious gift?

It’s Great to See More Financial Aid for Donors…But

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 was raised from 300% of the federal poverty guidelines (about $38,000) to 350% ($45,000); even better, the assistance now covers lost wages and related expenses like childcare and eldercare, which are often a deal breaker for prospective living donors; and, for the first time, NLDAC covers nondirected donors, who don’t even know their recipient. Unquestionably, that’s great news.

Okay, here’s the “but”: I can’t help feeling frustrated that the changes don’t do still more. Advocacy groups had lobbied for at least a 500% increase in income eligibility, which would be $64,000. Most disappointing of all is that the income guidelines are still based on the recipient’s income (fortunately, an exception is now made for nondirected donors). Evidently, the federal agency that had to approve any of NLDAC’s requests thinks that a kidney patient in failing health, struggling to pay his or her own bills, with a reduced ability to work, and unimaginable stress should be expected to pay for the donor’s lost wages, and sometimes travel and lodging.

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To be fair, the agency is not totally without a heart. Potential transplant recipients whose income is above the limit but can’t manage this financial challenge can always apply for a “financial hardship waiver.” But the burden is on the recipient and, by extension, the donor. A living donor transplant typically means a far shorter wait for a kidney (for a deceased-donor kidney in some states, it’s up to 5 to 10 years), a better outcome, and a welcome end to dialysis (ultimately, at a significant cost savings for Medicare).

With an ongoing shortage of organs, why not remove as many disincentives to living donation as possible? Why should living donors and/or transplant recipients, already contending with life-and-death matters, have to deal with all the paperwork and time-consuming, exhausting, budget- and soul-searching to see if they can even afford this lifesaving gesture?

It’s not right.

Kidney Donors Don’t Get Paid, But the Rewards Are Very Real

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 points.

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For a family, the practical benefits can be as concrete as money in the bank. A spouse or parent whose ability to work was limited by dialysis for a long period may gradually be able to resume a full-time schedule–maybe even launch a new career. That can substantially improve the family’s ailing financial health as well.

For family caregivers, particularly, donating a kidney to the loved one you’ve been caring for can bring huge relief. The reduced stress and no doubt improved sleep can have considerable benefits in energy, mood, overall outlook, and, as a result, even job satisfaction.

Then there’s the extraordinary motivation of saving a loved one’s life or turning it around. A living donor I know who’d donated to her husband described her decision as “purely selfish. I wasn’t about to lose him,” she insisted. I know the feeling.

Seeing someone you love–in my case, my adult son–who’d been pale, weak, and listless for months or years gradually become their old self again is pretty powerful. And a donor whose partner wasn’t interested in intimacy during a long period of ill health may see a positive change in their relationship.

Want to improve your social life? Give your partner a kidney! Couples who have been uncomfortable for a long time about socializing—whether because of physical obstacles or simply due to the dialysis patient’s lack of energy or interest—may soon be able to enjoy evenings out with friends or family.

For anyone who donates a kidney—even to someone they don’t know—the benefits are nearly universal:

The feeling of personal gratification is indescribable. Knowing that you’ve helped give someone—anyone—a shot at a healthy, productive life—is an extraordinary feeling. Living donors in studies report a boost in self-esteem, and 9 out of 10 say they would do it again. Through donor-support groups I’m active in on Facebook, I’ve been struck by how life changing the experience has felt for most of us, including the few who have later had complications or whose recipient didn’t fare well for as long as expected.

A fascinating journal article inspired this post. The researchers argue that for the above reasons and more, transplant centers considering a potential donor’s relative risk might do well to acknowledge and give weight to the undeniable tangible benefits for certain donors.

“Van Pilsum Rasmussen, S. E., M. Henderson, J. Kahn, and D. Segev. “Considering Tangible Benefit for Interdependent Donors: Extending a Risk–Benefit Framework in Donor Selection.” American Journal of Transplantation 17, no. 10 (Oct. 2017): 2567-2571.

Wear a Mask! The Life You Save May Be My Son’s

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 infection. With the horrific surge in COVID-19 cases throughout the country and around the world, this is not a theoretical point. When transplant recipients contract COVID, they have a higher risk of severe complications. My son’s immune system just isn’t protecting him enough, but your mask can help.

When I read reports of people insisting on their right not to wear a mask or to social distance, it makes me sadder, angrier, and more scared by the day. Scared, of course, for my immuno-suppressed son, to whom I donated my kidney in 2006, and scared, too, for my friend and co-author, Betsy, who is on dialysis; and for old friends with cancer. And for new friends in the kidney community; for anyone who’s a health care worker; for my husband and me and our healthy peers–all at high risk because we’re in the well-over-60 set–and for the otherwise healthy 30-somethings, like my daughter, who are at risk if their friends and neighbors don’t wear masks.

I could go on.

I’m reminded of the controversy over secondhand smoke. I can recall heated arguments with smoker friends when I thought we should sit in the nonsmoking section of the restaurant. As a society, we decided years ago that your right to smoke in public ends with my right not to have to breathe that dangerous air. It took decades of research, lawsuits, prosecutions, and, of course, far too many deaths, to get to that point. We don’t have the luxury of years or months or even weeks to debate this one. We need to help protect one another’s health right now–whether or not we love (or even know) the person next to us. If not my son, someone else’s.

When I wrote my original blog post on COVID-19 resources for kidney patients, back in March, I was naively certain it would be less relevant by this past summer. When I updated it in July and reported that things were hardly back to normal here in North Carolina, I was still watching for a light at the end of the tunnel.

A glimmer of light came in the fall, so my son went back to work after taking a months-long leave because he works with the public. But now we’re nervously watching cases rise again, though fortunately still not as dramatically in our area as they are in other parts of the state and country.

On the bright side for the kidney community, as I noted in July, many U.S. transplant centers that had suspended living-donor kidney transplants since the pandemic have resumed them. And that’s critical because kidney failure and the need for a transplant don’t stop just because there’s a pandemic going on. Naturally, the coronavirus adds a few extra layers of complexity to an already delicate process. But with proper precautions and an abundance of skill and care, live donations and transplants are proceeding and succeeding.

If your donation to a kidney patient was put on hold because of the pandemic, don’t hesitate to contact the transplant coordinator for an update. Also, periodically be sure to check this link for current COVID-related information about living donation and upcoming transplant evaluations. And, oh yeah, wear the damn mask! My husband, son, and I proudly did on the recent kidney walk in North Carolina.

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And happy Thanksgiving! Even though the holiday may look and feel different this year, most of us have something to be thankful for. For starters, I’m thankful for my excellent health 14 years after donating my kidney.

Real Funds and Real Sun for a Virtual Kidney Walk

Well, my husband, son, and I participated in the 2020 North Carolina virtual kidney walk this weekend. Yes, it was different from all the others we’ve walked in, but many things were familiar. Most important was the opportunity to raise sorely needed funds for kidney disease research and awareness. By the end of the day, with fundraising still going on, they’d already raised more than $100,000!

All laced up, and masked up, of course, and ready to walk! That’s Paul on the end and my husband, Neil, in the middle.

And it’s always special to have an opportunity to hear moving stories from kidney recipients and donors, even if they had to do it online. It would have been great to meet them in person. A few takeaways:

A familiar, sobering one, came in hearing from transplant recipients and dialysis patients and learning that, like my son, Paul, their kidney disease diagnosis had come as a shock. One young woman said she’d felt sick one day and gone to the ER, and learned that she had only 15 percent of kidney function. Another was a seemingly healthy, young fitness instructor who developed baffling and serious symptoms. After multiple biopsies she was diagnosed with a rare kidney disease, FSGS. She was fortunate to receive a transplant 4 years ago.

It bears repeating–the symptoms of chronic kidney disease are usually not apparent until it’s advanced nearly to kidney failure and the need for dialysis or transplant. That’s why prevention is so critical and early detection so important. And when a kidney is needed, living donation is the key to shorter waits and better outcomes.

When a couple of the donors spoke, I found myself nodding in agreement, as always, at what a positive experience donation is for the donor, not only the recipient. Eerily, one of them used almost the exact words I’d used a couple of weeks ago in a video I filmed for Donate Life/WELD: I was surprised at how incredibly gratifying it was for me personally…I never expected the impact it would have on my own life…

Luckily, this walk may have offered the best weather we’ve ever had for a kidney walk: a breezy, sunny day in the 70s. And that was real, not virtual.

Still Walking After All These Years–But Virtually

Another Kidney Walk date is approaching: Sunday, November 15. My husband, son, and I (our daughter’s up in Brooklyn) will be “there” as usual. Because of the pandemic, this year everyone will be walking in their own neighborhood or location of their choice in the 2020 North Carolina Virtual Kidney Walk. That’s a first.

We’ve walked in more kidney walks than I can count: four or five recent National Kidney Foundation events starting at the Durham Bulls Ballpark location (including last year’s coldest one ever); maybe another four or five NKF walks in Research Triangle Park, which wove through the campus of my long-time employer, RTI International, often a sponsor; plus a few Kidney Kare run/walks in Carrboro, NC, sponsored by the University of North Carolina Transplant Center, where I donated a kidney to my son in 2006.

Just a small sample of my collection of tee shirts from many years of Kidney Walks in North Carolina.

We’ve walked in blistering heat, when the water bottles the helpful volunteers were distributing were downright hot; in chilling cold, with our hoods up and gloved hands clutching thermoses; stepping gingerly over deep puddles, dripping wet as we shunned umbrellas (so far never in snow). Still, the events are usually fun and always inspiring. In the midst of the upbeat music, entertainment, and snacks, there are of course speeches, information, organizations with handouts (so excited that Donate Life/NC WELD–Women Encouraging Living Donation–had a table last year), and health screening booths.

I remember the middle-aged man who spoke to the gathered walkers before the start of the walk a couple of years ago. He described being at one such walk a few years before and deciding to do the screening. There he’d discovered to his shock that he had stage 4 kidney failure. That Kidney Walk saved his life: he began dialysis within a few months and was able to have a transplant a couple of years later.

It bears repeating: chronic kidney disease is a silent killer. Most of the more than 30 million people in this country who have it don’t know it because they don’t have symptoms yet—and may not until it’s too late. The transplant center and NKF have mobile units that do screenings around the state throughout the year. Education, screenings, and research all cost money.

That’s why we walk, wherever. Proudly wearing bibs that say DONOR (me), RECIPIENT (my son), or DONOR FAMILY (my husband), we chat with other walkers (this year it will be through masks). We’ve met hopeful families of kidney patients desperately in need of a kidney, transplant recipients happily walking with a bounce in their step for the first time in years, patients who’ve been on dialysis for more than a decade and may never have a transplant because they have too many other serious health conditions–some are not strong enough for the walk but come out to volunteer and help raise funds for awareness, education, and research.

Please consider donating whatever you can or just share this post on social media or email it to your families and friends. But whether or not you donate to this virtual kidney walk, or to any kidney disease organization, please spread the word about the importance of kidney health—and be sure to get your kidneys checked.