The National Kidney Foundation asked us advocates to make a video on Why I Advocate. Now, for me, making a video sounded pretty daunting. The message part wasn’t the problem. I wrote that fairly quickly once I decided to keep it simple. Instead of focusing on living donation, I would just talk about chronic kidney disease awareness and how I came to donate my kidney to my son.
With my son (Paul) and husband (Neil) at an NKF Kidney Walk in Durham, NC, in 2016.
I’ve always thought I have two valuable simple points to add to this discussion. One is that, as you may already know, I’m a wimp. I’m hardly a brave, extroverted natural risk taker. I think that can resonate with a lot of people and maybe belies some myths about living donors.
The other is about my son, who doesn’t fit the image that most people have about those who suffer from chronic kidney disease. For starters, he was young, thin, and otherwise healthy when he developed it in college. A lot of people figure that if you don’t have a family history of kidney disease (we don’t), and you’re not obese or have diabetes or high blood pressure, it’s not something you need to think about. Wrong!
Watch my brief video to see why. (And yes, I even managed to make a video on my laptop!)
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 and others in the kidney community. I hope that you will share the resources below with your friends and family so that they can remain safe and healthy. These materials are provided by the National Kidney Foundation (NKF) and offer advice on keeping healthy during this horrific pandemic. These links will be updated as needed.
Whatever your own health status, and wherever you live, please stay safe and closely follow recommendations and requirements in your area. Also, here’s clear, valuable information on the virus from someone who knows more than anyone on the subject, Dr. Anthony Fauci, interviewed by Trevor Noah. https://youtu.be/8A3jiM2FNR8
Most of my kidney-related milestones mark the number of years since I donated to my son (2006), who was diagnosed with chronic kidney disease when he was in college. This month I get to celebrate a different kind of milestone: one year since I launched this website! I didn’t know what to expect when I set out to lend a helping hand to anyone who might remotely be considering being evaluated as a living donor. I wanted to offer reliable, accessible resources about donation, offering the candid perspective of someone who’d been there.
It’s been a rewarding learning process all the while, and I am fairly pleased with the results and the response. At this point numbers may not mean much, but they’re still pretty interesting. Here’s what the numbers tell us about the response (as of March 2020):
March 12 is World Kidney Day, and it seems fitting to continue our theme of women and kidneys (two of my favorite subjects). In a recent post, I pointed out that neither gets the respect and attention they/we deserve. It’s mostly because most people just don’t know a whole lot about what they do: in the case of women, we hold up half the sky, as the African proverb says. And kidneys do much the same for the body, quietly keeping it functioning as it should, balancing nutrients, eliminating dangerous toxins, regulating fluids and salt content, promoting bone health. I could go on.
Now how do I tie this back to women, you ask? Let’s consider living kidney donors. Not surprisingly, most are women. When I participated in setting the Guinness World Record for largest gathering of living donors in April 2018, it was clear that the vast majority of us donors there were women. Now, it’s tempting to say that’s all due to our natural empathy and nurturing instincts. I do believe that’s partly responsible, but I know it’s more complicated than that.
For one thing, donating a kidney, like any major surgery, usually entails taking off work for at least a couple of weeks, if you have a sedentary job as I did (editor/writer). If you’re a laborer, however, because of a restriction on lifting anything over 10 pounds for about the first 6 weeks after surgery, that obviously could mean a lot longer interruption.
Donors who are lucky enough to have sufficient paid sick leave (or any at all) don’t have to worry about lost pay. But for anyone who doesn’t, that’s a major road block to being a live donor. The reality is that, in a lot of families, it’s still harder to get by without the man’s earnings. The National Living Donor Assistance Center has been offering much-needed financial help with travel and lodging costs for some donors who need to travel to their recipient’s transplant center. It’s a wonderful program, but it hasn’t covered lost pay and other uncovered expenses. Now there’s a plan to significantly expand that assistance to cover a donor’s lost pay and major “incidental” expenses like child care and elder care. But it needs a major boost in funding from the House Appropriations Committee. Please contact your representative and tell him or her to get behind this important effort. Helping living donors helps to save lives.
Yes, March is National Kidney Month and National Women’s History Month. What do kidneys and women have in common, you ask? For starters, both are underappreciated. We can hope that someday we will get to a point where we don’t need to introduce people to integral aspects of our culture and our history (like Black History Month). For now, though, we clearly do need these reminders. Certainly the recent death of the brilliant NASA mathematician Katherine Johnson(remember “Hidden Figures”?) highlighted the ongoing need for both black and women’s history month.
Similarly, this month we highlight the critically important role that kidneys play in our bodies. Do you know what your kidney function is? You may think you know what women contribute to daily life, but do you know what kidneys do? It would be crucial enough if they just removed dangerous toxins from the blood, but they also regulate the amount of fluids in our body, maintain the salt content of those fluids, balance minerals, produce urine, promote bone health, and so much more.
I’ve had a healthy respect for kidneys ever since my son was in dialysis. For nearly 2 years, dialysis machines, doctors, nurses, and technicians did a masterful job of trying to approximate what healthy kidneys manage to do every day. Yet even with doing their damndest to get this juggling act all right, dialysis can achieve only about 20% of normal kidney function. One-fifth.
Like women, kidneys pull off much of their heroic daily work quietly, often without calling attention to themselves. That’s why when kidneys are starting to fail, we usually don’t notice. More than 30 million Americans have chronic kidney disease—meaning they’re gradually losing kidney function—and most of them don’t know it. It’s called “the silent killer” because people usually don’t feel sick (and often look fine) until it’s dangerously far along. I know of people who just had a routine screening at a health fair, or went to the ER for a broken arm, or just didn’t feel right—only to learn, to their shock, that their kidneys were failing significantly and they needed to start dialysis ASAP.
My son knew he had kidney disease ever since it was diagnosed following a strep infectionwhen he was in college. He was otherwise healthy and was told to monitor the condition with routine blood tests, which he did, never showing or feeling any symptoms. It was only at a routine checkup soon after his college graduation that the tests showed a precipitous decline in his kidney function. Within a month he was having surgery to put in an access point for dialysis, in 3 months he was undergoing dialysis 3 days a week, and close to 2 years later, he was welcoming my left kidney into its new home. It’s lived there happily since 2006, by the way. (My right kidney is managing just fine without it.)
So, this month, please make an appointment to have your kidney function checked with a simple blood test. (And be sure to thank a woman every day!)
In my last post I wrote about celebrities who’ve been given a shot at a fuller, healthier life because of a living kidney donor. If you thought they mostly led quiet restricted lives, along comes David Ayres, the emergency goalie who won the game for the Carolina Hurricanes hockey team against the Toronto Maple Leafs!
Ayres received a kidney from his mother (like my son did!) 15 years ago. Since then the 42-year-old kidney transplant recipient has been happy to be a practice goalie, Toronto arena operations manager, and sometime-Zamboni driver. He never dreamed he’d get his turn in an NHL game, an always-physical and sometimes brutal sport. But on February 22, when a string of injuries left the Canes without a goalie, he was called to the ice with 28:41 to go in the game. He stopped eight shots and helped earn the team a dramatic 6-3 victory in his NHL debut.
The Canes are selling No. 90 Ayres tee shirts, for which he will receive royalties. A portion of the proceeds will go to a kidney foundation in his honor. The Canes are working with him to determine which foundation. There were a lot of winners that night in Toronto. The donation and the increased awareness of kidney transplants means that there will be even more.
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.
Fortunately, some of these famous live-kidney transplant recipients have become spokespersons for National Kidney Foundation campaigns, and some, like former NBA star Alonzo Mourning, comic George Lopez, and former NFL star John Brockington have gone so far as to launch their own kidney disease awareness foundations. (Did you know that my dear WELD [Women Encouraging Living Donation] started as an offshoot of the John Brockington Foundation before joining forces with Donate Life?)
Other celebrities have individually turned to the media to share their personal transplant experiences. Singer Selena Gomez and her donor, actress Francia Raisa, gave several helpful major interviews in 2019 about Gomez’s transplant, shedding light on the donation process and the aftermath. And actress Sarah Hyland candidly shared details of her two kidney transplants, first from her father and most recently from her brother, and of her struggles with depression.
Even though chronic kidney disease is more common than breast cancer or prostate cancer, the general public knows very little about it. If more celebrities who’ve been touched by kidney disease and transplant would openly talk about their life-changing stories, it could encourage more people to have their kidneys checked, register as organ donors, and even consider being living donors. All those actions would go a long way toward reducing the years-long wait for a kidney and ultimately saving more lives. By the way, celebrity status and money offer no privileges on the national waiting lists for a deceased donor.
How many of these celebrities did you know had had kidney transplants (the year of their transplant is next to each name)?
Happy Valentine’s Day AND National Donors Day! You don’t need to be a living donor like me to be able to someday save a life–or several, in fact. If you don’t have that little heart on your driver’s license and haven’t already registered as an organ donor, please don’t wait to renew your license: go to organdonor.gov, among other sites.
More than 113,000 people in the United States are waiting for a lifesaving organ (most of them for a kidney). Only about 3 in 1,000 people die in such a way that organ donation is possible–for example, in a hospital following a car accident–so the pool is very small. That’s why it’s critical that everyone register. But those that can be organ donors can donate up to eight organs: two kidneys, two lungs, a pancreas, a liver, a heart, and intestines. Plus eyes and tissue–even hands and face.
Registering as a donor is important, but sharing your wishes with your family is just as important. When in doubt, at a very difficult time, a family in grief may choose not to donate the person’s organs. Many grieving families take lasting comfort in knowing that their loved one’s organs will help save someone’s life and bring relief and joy to another family. Most families will want to honor your wishes, if they just know what they are.
I always tell potential kidney donors to keep an open mind but to do their homework and be as well informed about living donation as they can be. Turns out that that advice even applies years later.
Through social media donor support groups, I recently was stunned and outraged to learn that some donors have been told that they have stage 3 chronic kidney disease. One donor said she cried all night. Before you conclude that their “disease” is a result of kidney donation, I hasten to add that these were people with normal kidney function. In other words, as researchers have demonstrated, those living donors DO NOT HAVE CHRONIC KIDNEY DISEASE! Their slightly low readings are perfectly normal for them.
Apparently, their primary care providers—and, unbelievably, sometimes even nephrologists—were referring to the eGFR (estimated glomerular filtration rate) scale based on people with two kidneys and/or real kidney disease. Donors lose 25 to 35% of their pre-donation kidney function, but that’s still sufficient to lead a healthy normal life. It’s meaningless and patently wrong to look at the numbers in a vacuum and say that these people have chronic kidney disease.
As we get older, no matter how many kidneys we have, our kidney function declines. It’s especially common for people over 70, like me, to have a slightly low eGFR. At my last check-up, though, 13 years after donating my kidney to my son, my eGFR was 69 (normal is over 60).
So, if you are a kidney donor, don’t be alarmed at news of a slightly high eGFR. Ask questions (how long has it been in that range? what’s your creatinine?), and always remind your provider that you have one kidney. You may well be relieved to know that your new normal is just fine!
This week I met with North Carolina Rep. Verla Insko, my state legislator, and Katey Cipriani, the National Kidney Foundation’s regional community outreach director. The topic was living donation, of course. We were seeking Rep. Insko’s support for a Living Donor Protection Act in our state, as we had with other legislators just a few months ago at the legislature. The General Assembly is between sessions now, so this meeting was more informal, a pleasant chat in a quiet local coffee house in Chapel Hill. I was there to share my story of donating to my son and offer some personal insights into why we need to protect living donors from discrimination.
Katey (far right) and I (far left) with fellow donor Dolores McGrath and Young Bae, Rep. Insko’s legislative assistant, who set up our meeting with Rep. Insko.
So why might donors ever be discriminated against for saving a life? Let me give you an example. To be approved as a living donor, I had to pass numerous tests that looked at my heart, lung, kidney, general fitness, myriad blood tests… Thirteen and a half years post donation, my kidney function is fine and I’m still in excellent health at 71. I’m active, enjoy Zumba a few times a week, and walk regularly. Nothing remarkable there, but I have donor friends in their 50s and 60s who run marathons. And yet…
If we apply for a life insurance policy tomorrow, there’s a chance an insurer could either deny coverage or up the premiums. Some cap coverage much lower than requested. Doesn’t make sense, does it–not to mention that it’s morally indefensible? It doesn’t happen often, but a study found that about one in four living donors had experienced some type of insurance discrimination–mainly due to misinformation about the negligible impact of living with one kidney. Did you know that many healthy people were born with one kidney? Donors do lose some kidney function, but the other kidney gets plumper and takes on part of the job of the “missing” one. As a result, donors have sufficient function to live normal productive lives.
Among other things, a state Living Donor Protection Act would prohibit insurance companies from denying or limiting coverage–or charging higher premiums–for life, disability, or long-term care insurance for living donors. The proposed federal LDPA, which has been reintroduced in Congress and has dozens of sponsors, would also address job protections and a few other issues that can be disincentives to donation. With nearly 100,000 people waiting for a kidney from a deceased donor, removing those disincentives is critical.
Most people don’t realize how widespread chronic kidney disease is–it’s more common than breast cancer or prostate cancer. As I told Rep. Insko, I really think most people are no more than two degrees of separation from someone who’s had or needs a kidney transplant: a friend of a friend, a neighbor’s cousin, a PTA member’s spouse…
Rep. Insko listened attentively and asked how other states have approached the task of protecting living donors: How many have relevant laws (11, but several more are in process)? Which one do we want to model North Carolina’s on? Did those states encounter any pushback? What concessions did they have to make to get it passed?
She also had several helpful suggestions of people in the General Assembly to approach, including those who had some ties to health care. She promised to take a close look at the related materials Katey had brought and was interested in learning more. As it turns out, we have time–most new legislation can’t be introduced until the 2021 session of the General Assembly.
I’m learning that advancing legislation is a slow, stop ‘n start process. But we’re making progress, gathering support, and picking up some tips along the way.
Could You Be a Kidney Donor? What to Expect If You Give the Greatest Gift 