Could You Be a Kidney Donor? What to Expect If You Give the Greatest Gift
(If a wimp like me could donate a kidney, you probably can, too!)
National Donate Life Month is nearly over, but of course it’s a topic that we should talk and write about all year long. I’m always happy to debunk myths or highlight little-known facts about organ donation–particularly living donation–so I thought I’d resurrect another Donate Life Month quiz. Let me know how you do–and please share it to spread the word.
As you surely know by now, April is National Donate Life Month. The vast majority of my posts, naturally, are about living donation and transplant and kidneys. I haven’t written much about the more well known topic of organ donation—that is, after death. It’s one of those subjects that make some people uncomfortable (I was one of them, when I was young).
That said, I’m going to give it a try anyway and hope that you’ll keep reading. No matter what I’m writing about, you may have noticed by now, I prefer a light touch and maybe go for a smile or two. So I’m not going to berate anyone who’s not already signed up to be a donor. And I’m not going to drone on about how important it is and how it’s our duty to our community yada yada. You already know that, right? (If not, I might note that more than 100,000 people are waiting for a lifesaving organ in this country—most of them for a kidney—and about 17 people die each day because they didn’t get one in time.)
So what am I going to do here? I’m just going to ask a few simple questions:
1-What percentage of people in this country do you suppose die in a way that even makes it possible for their organs to be donated?
2-If a registered organ donor is dying in a hospital, do you imagine that the doctors and nurses will throw in the towel that much sooner?
3-Are you afraid you might not be “completely dead” when they get ready to recover your organs?
Answers:
So, if you’ve read this far, thank you! If you weren’t already signed up, I hope this post has given you something to think about and maybe you’ll go to organdonor.gov–or any of a dozen or more sites (don’t wait to renew your driver’s license!)–to register. If you’re already registered, please share this post with others who may not be or who might know someone who would like to share it.
For related posts, resources, and information on The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.
Yes, I finally made it! I made it all the way to the Capitol earlier this month for in-person meetings.
During a hectic but fun afternoon of training and getting to know my delightful team members (pictured at right), we got tips not only on the legislative “asks,” but also on the fine points of meeting with congressional staffers. In fact, we even heard from two congressional staffers who knew the topics firsthand: one of them had been a National Kidney Foundation advocate himself, another was a recent living donor!
So what were our asks this time? Alas, if they look familiar that’s simply because we’ve been there before with the same critical requests:
1-Co-sponsor the Living Donor Protection Act (you’ve read a lot about this one both here and elsewhere through the years): To end discrimination by insurance companies against living donors just because of having donated a kidney.
2-Co-sponsor the Improving Access to Home Dialysis Act: A much newer piece of legislation, this would make it easier for those who want to do dialysis in their own home (right now only about 15% of people have dialysis at home because it’s not a simple matter–it requires training and support). The act would provide lots of in-home support for the first 90 days, among other benefits. This legislation would obviously be a boon for people in rural areas who may live well over an hour’s drive from the nearest dialysis center.
3-Support increases in funding for kidney research, innovation, and early detection. We asked for a substantial increase in funding for the CDC’s Chronic Kidney Disease Initiative plus increases on a par with other important diseases in the National Institutes of Diabetes, Digestive and Kidney Disease (NIDDK). While other major diseases have seen dramatic improvements in recent years, kidney disease outcomes, on the contrary, have gotten worse.
Recently, I was excited to receive a very happy update to a long, frustrating quest for a kidney. Stormi Murtie, a North Carolina woman who had contacted me last year when she learned of our book, had been tirelessly trying to get a kidney for a loved one to whom she could not donate. She’s now getting ready to pay it forward by sharing her healthy spare kidney with someone else. I thought reading her moving story might give hope to anyone who has ever despaired of getting “the call.” (I took the liberty of adding emphasis to a few passages that seem particularly important or instructive.)
Stormi writes:
Two years ago my then 32 year old firefighter step-son Brecon contracted a very rare life threatening condition called Goodpasture Syndrome. It did not kill him, but it killed his kidneys. Left in total renal failure, his new normal was 4 hour dialysis sessions 3x’s per week. His body could not tolerate home hemodialysis, so after his work day ended he would spend hours at the dialysis center. It was exhausting. With us in NC and Brecon in FL my husband made countless trips back and forth and we learned everything we could about renal failure, antibodies, point systems, hospital protocols, kidney transplants–and living kidney donors. From books, articles, organizations, we poured over every snippet of info we could. The process can be extremely complicated, and feels frustratingly slow.
We learned that much of the info we received was from a pre-Covid system and did not apply. The medical community had changed and with it many of the systems previously in place were stretched very thin or no longer applicable to our situation. I came to understand the incredible need for living donors of all ages, and I was committed to being healthy enough to be approved.
Slow motion forward to August 2022: after extensive medical appointments, a new lifestyle, testing at Shands in Gainesville, and 25 lbs lighter, I was approved to be a donor in a “paired donor exchange” program.
While waiting for the computer to uncover any viable options, Brecon was also on the waiting list at 2 Florida hospitals for a deceased donor kidney, and multiple friends and family were being tested to see if they were a match. Wherever a viable kidney could be located first, we were casting as wide a net as possible. Since he was highly sensitized, finding a match was very difficult. Suddenly and unbelievably, after many false starts, on November 7, 2022 Brecon received that call. And after waiting all day for a thumbs up or down, he received a kidney from a selfless family of a deceased donor. He is currently doing well and we are so hopeful he continues to thrive with his new kidney. After two years, the very first trip Brecon was able to make was to us.
Now: It is time for me to pay it forward. Details are still in flux but I have also received the call that a chain donation is on the table. With me as the altruistic first cog in a chain of donations, three wonderful people are in queue to finally receive their transplants (nationwide, over 93,000 are on the kidney transplant waiting list).
One day soon, multiple surgeons, donors and recipients will converge in Gainesville, and like a fine-tuned performance, an intricate ballet of donors and recipients, following multiple operations, lives will be changed. I am honored to be able to donate my kidney to help a stranger in need, to ultimately pay it forward just like the selfless donor family did for Brecon.
For related posts, resources, and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.
If you’re anything like me, you’ll want to read the bad news first. (I’ve never understood why anyone would want to hear good news first, feel terrific, only to then be brought back down and left with sad or depressing news.)
So, first the bad news:
The Living Donor Protection Act, which was first introduced in 2014, still hasn’t crossed the finish line on its way to becoming law. It would provide basic protections against discrimination by insurance companies, as well as job protections for taking time off work to donate. Remember the latest big push during the meetings with lawmakers we had in the fall? We were SO close to finally getting this thing passed. I’m not sure if it’s still technically possible, but it’s as good as impossible. That means we start all over in the next session of Congress. We”ll also need a new House sponsor because Rep. Jaime Herrera Beutler wasn’t reelected.
Now the good news!
Even though it didn’t make it into law, the LDPA had the most cosponsors ever: 158 in the House and 43 in the Senate. That has to translate into increased bipartisan support in the next Congress. In other words, we shouldn’t need to start from scratch. They all know about the act now, and, given that nearly 100,000 people in this country are waiting for a lifesaving kidney, most lawmakers understand its importance.
$$$ for Kidney Disease Awareness and More: Congress just released its final appropriations bill that includes substantial increases in funding for federal programs that promote kidney disease awareness, education, and research. Sure, we need more living donors and must remove obstacles to donation, and yes we need an implantable artificial kidney, but ultimately the best way to meet the critical need for kidneys and save lives by reducing kidney failure, is to PREVENT chronic kidney disease in the first place. So, education and research are absolutely essential.
The Immuno Drug Bill (aka Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act), which finally passed at the end of 2020, goes into effect very soon: January 1, 2023. Believe it or not, this one had been kicking around way longer than the LDPA: 20 years! The kidney community has been fighting to change the law that arbitrarily cuts off Medicare coverage for transplant recipients who don’t otherwise qualify for it–for example, those under 65– after 36 months post transplant. The Immuno bill now ensures that people with no other health plan to pay for their critical antirejection meds will be able to have these drugs covered for the life of the transplant.
Eligible individuals can start applying for the Medicare immuno drug coverage right now. If you have questions, contact the toll-free help line at 855.NKF.CARES (855.653.2273) or nkfcares@kidney.org .
For related posts, resources, and information on my book, The Insider’s Guide to Living Kidney Donation,
please be sure to explore the rest of my website.
Every Thanksgiving at my house, we go around the table after dinner and talk about what we’re each thankful for–a fairly typical American tradition that for us started when my adult kids were little kids.The usual topics come up, of course: being together, good health, good news, good food. Naturally, one not-so-typical topic also has come up every year for nearly two decades: kidneys. So I decided to devote this Thanksgiving blog post to kidneys and living donation.
I’ll start. I am thankful for
So much has happened in the field of living donation since then, and prospective donors can now take advantage of options that didn’t practically exist in the early 2000s. So, even though my family didn’t benefit, I’m thankful that the recent donors I know and the would-be donors who have written to me in recent years can. Here are just a few of those options:
Now it’s your turn. If kidneys and/or living donation is a big topic in your house too, you might want to reflect on these worthy items for thanks giving after you finish your pie. Happy Thanksgiving to you and yours!
Last week I had a day of back-to-back virtual meetings with congressional staffers–plus one congressman!–to talk about the Living Donor Protection Act and kidney health in general. Hard for me to believe that this was my fifth such event. Unlike most of the others I’ve been a part of, this one represented a partnership of 22 kidney-health organizations–including the National Kidney Foundation, of course–led by the American Society of Nephrology.
The good news: The LDPA is closer to being passed than at any time since it was first introduced in 2014.
The bad news: With Congress adjourning soon, if it doesn’t make it across the finish line now, we’ll have to start all over in the next session of Congress. (That thought is not only depressing but overwhelming because of logistical issues that I’ll save for another post.) Consequently, our “ask” was not just for cosponsorship of the bill by those members who hadn’t yet signed on but for help from all of them to get the bill to the floor.
As I related here after one such day of meetings, I’ve come to understand what the trainers have told us repeatedly: it’s the personal stories that will stay with and move a staffer or member of Congress. They’ve had a gazillion meetings and heard all the appalling numbers before: that nearly 100,000 Americans are waiting for a kidney and at least 13 die every day because they didn’t get one in time. They know all that on an intellectual level. It’s not the same as hearing what it means for a mother to see her son grow more and more listless and depressed as he struggles through long months of dialysis.
I was joined by an impressive group of fellow advocates who represented an interesting range of perspectives: Brenda Johnson, from the Veterans Transplantation Association, who told of veterans struggling with kidney failure or having to fight with insurance companies to get life insurance if they donate; Lauren Drew, NKF’s very savvy governmental affairs director, who’s been my mentor for such meetings since I first became a Kidney Advocacy Committee member; Dr. Hostensia Beng, a pediatric nephrologist, who shared heartbreaking stories of parents trying desperately to find a kidney donor for their young child; and Dr. Gentzon Hall, a nephrologist/genetics researcher at Duke Medical Center (just down the road from me), whom I’d met last year when we were on the same advocacy team. He emphasized the dire need for more research funding.
The highlight of the day had to be our meeting with Rep. Gregory Murphy, a former transplant surgeon. He knows firsthand how transplant transforms lives, and he promised not only to cosponsor the Living Donor Protection Act but to do all he could to help move it across the finish line before Congress adjourns.
It’s soo close. C’mon, LDPA!
For related posts and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.
When I launched this website in early 2019, my goal was simple: to raise awareness of living donation by sharing my story of donating to my son, along with timely posts and practical resources to help donors and would-be donors–and anyone interested in supporting people with chronic kidney disease. I threw in a dose of self-deprecating humor because I’ve seen how well it helps information go down.
I had no sense of how many people I could reach. The website’s following has certainly grown but continues to be a modest audience. And if I don’t spread the word on social media about each new post, far fewer people see it (after all, if a tree falls in the forest and there’s no one there to tweet about it, how in the world does anyone know it fell?).
So, I’m excited, honored (and downright tickled) to announce that the National Foundation for Transplants discovered my blog and wants to amplify the sound of the falling trees–I mean, blog posts!
NFT has asked me to be a guest contributor and run one of my posts once a month on its site. Partnering with such a large, respected organization to spread the word about the importance of living donation–all kinds–is a fantastic opportunity.
An individual donor advocate–particularly a nontech-savvy one like me–can’t hope to make much of an impact alone. Certainly, for government-related aims, having a major, moneyed organization behind you is essential. Being an active kidney advocate for the National Kidney Foundation, and to a lesser extent, a UNOS Ambassador, has been extremely gratifying.
But I’ve also wanted to reach out personally to potential donors because I believe that my story is more relatable than most: I donated to my son, not a stranger; our family had no history of kidney disease; and, maybe this most of all, I’m not an adventurous person, I’m a wimp (I faint at flu shots). And, for goodness sake, I’m no saint or heroine. Most anyone in my situation would have done the same if they could.
I hope that NFT can help me share my perspective and my insights with a wider audience. When you join forces with dedicated, like-minded people and organizations, anything’s possible. Thank you, NFT, for helping this donor advocate amplify her passionate but quiet voice.
For related posts and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.
Many people assume that you have to be a blood relative to donate your kidney to someone. And in the early decades of living donation, that was pretty much the case. Family members are still the largest single group of living donors, but the percentage of unrelated donors has been growing. This contributor spotlight highlights two of our book’s contributors who learned firsthand that a donor might actually be someone you know from work. (Afterward they often do feel like family.)
One of our contributors–Linda Watson–chose to donate to a colleague friend (my co-author, Betsy!). Another, Joe Reichle, instead received his kidney from a former student’s spouse.
Linda had worked with Betsy for years before she learned how serious her friend’s health problems were. Still, as Linda relates in her chapter, like many people back in 2003 she didn’t realize that she herself could possibly be eligible to donate. But when she saw several other colleagues step up to be tested, she knew that this was what she wanted to do.
Linda explains that her decision also coincided with a time in her life when she very much needed to “do something life affirming.”
Receiving Linda’s kidney enabled Betsy to get off dialysis; produce urine once again (“I never thought I’d get so emotional about seeing a bag of urine,” Linda writes, describing her first visit to Betsy’s hospital room); and return to her position at the university full time. (About 17 years later Betsy would need another transplant–while our book was in production, in fact. Happily, she’s back to working full time again.)
Today Linda, who is in phased retirement from her work in speech and hearing sciences, clearly leads a full life. Besides gardening; traveling with her husband, Joel, albeit limited by COVID; singing in the choir and participating in other activities at her church, she recently tried her hand at voice lessons. She looks forward to traveling more extensively as the pandemic eases.
Joe Reichle has polycystic kidney disease, like many in his family, several of whom died relatively young. He begins his chapter by explaining that as a young man, he’d always figured that that would be his fate too. Instead, Joe, a retired university professor in the Midwest, led a normal adult life for 30+ years before the word transplant ever surfaced.
When Joe learned that the wait for a deceased donor kidney could be five years, he considered a live-kidney transplant in the hope of getting a kidney before he needed dialysis: a preemptive transplant. Knowing too that a living donation typically has a better outcome, he reluctantly let it be known that he needed a transplant (“I’m a person who doesn’t like to ask for things”). Joe relates in his chapter how surprised and moved he was to see colleagues and former colleagues seek him out, wanting to donate to him.
Many would-be donors were eliminated, and when a former student volunteered but later became pregnant, her husband fortunately volunteered to donate in her stead. Since his transplant, Joe says, despite other health issues, “for the most part, my health has been very good.”
He and his wife enjoy a comparatively quiet life in northwestern Michigan on East Grand Traverse Bay, where they enjoy photographing the wildlife, which includes bald eagles, red foxes, deer, chipmunks, raccoons, and the occasional bobcat.
They are less sedentary, he says, since the arrival of a lively two-year-old weimaraner-lab mix, named Rosie, who enjoys the water. Joe also still “dabbles” in intervention research for children with communication delays.
Even though Joe’s donor, Robert Drager, and family live far away in Pennsylvania, the two families often shared special occasions in the first several years and have stayed in touch.
Nearly 20 years post transplant, Joe has some words of advice to anyone considering a transplant, which he calls “one of the best decisions that I have made. Your quality of life will be significantly enhanced,” he says. And, as for your family, “they will spend less time worrying about you.”
We think those are both awfully good reasons.
For related posts and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.
In my last post I promised information about living donation-related protections and benefits, by state. As I mentioned, while awaiting passage of a federal Living Donor Protection Act, more than half of states now have their own version (28 at last count). In fact, like the one we’re supporting in North Carolina, some actually are more generous than the federal version (by including paid leave for state employees who donate).
But the LDPA is just one way that states can encourage living donation. Financial supports and job protections are other critical ones. Are you considering being a living donor, or have you donated recently? Do you know what the relevant tax provisions and protections are in your state–or in a state you may be looking at? It’s worth doing your homework.
The National Kidney Foundation has a terrific resource in a map you can click on to find out what donation-related laws and protections a particular state offers. Does it have a Living Donor Protection Act, or similar insurance-discrimination protections? Does it also have job-protected living donor leave for private employees? How about for state employees? What about paid leave? What about tax deductions? Even better, what about tax credits?
The American Kidney Fund website also features an invaluable resource: a state report card. It rates each state based on important donation-related measures and provides an overall rating on how well that state encourages living donation and removes barriers. Not surprisingly, only a few states merit an A: Arkansas, Connecticut, and Louisiana. Glad to see that more than a dozen at least get Bs, but nearly as many have Cs, a few get Ds (including, alas, North Carolina).
Unfortunately, nine states rate an F–that is, these states failed miserably because they have no donation-related measures in place: Alabama, Michigan, Montana, Nevada, New Hampshire, South Dakota, Tennessee, Vermont, and Wyoming.
The tragedy is that none of these donation measures is really controversial–they shouldn’t be so damn hard to pull off. They are simple, reasonable, common sense ways that a state can demonstrate its support for people who help save a life in this way. In fact, not only does encouraging living donation save lives, for kidney patients it reduces costs by reducing the number of people on dialysis (Medicare pays about $90,000 a year per dialysis patient).
With 106,000 people in this country on the national transplant waiting list (most of them needing a kidney), it seems that the very least we can do is remove the barriers to living donation.
For related posts and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.
Could You Be a Kidney Donor? What to Expect If You Give the Greatest Gift 