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):
Views: nearly 5,000
Countries: 41; the vast majority of visitors are naturally from the U.S., but Canada, the U.K., India, and Australia each had more than 50.
Ranking: no. 9 of “Top 30 Kidney Donor Blogs, Websites & Influencers in 2020”
Just read another wonderful piece about the kidney recipient/hockey goalie, David Ayres, who helped win the game for the Carolina Hurricanes last month. The fascinating stories have brought much-needed attention to kidney disease and transplant. In his honor, the Hurricanes sold No. 90 shirts, and part of the proceeds is going to the National Kidney Foundation in North Carolina.
Now Ayres is using his newfound fame to promote organ donation generally, with a different kind of shirt: a month-long campaign to support “Green Shirt Day” in Canada. The campaign honors the memory of Logan Boulet, a young Humboldt Broncos ice hockey player killed in a team bus crash in 2018. His organ donation prompted thousands of Canadians to register as organ donors. They call it the “Logan Boulet Effect.”
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.
What do the celebrities listed below—among them, athletes, actors, musicians, of different ages, races, and ethnicities—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.
Some of these live-kidney transplant recipients have been spokespersons for National Kidney Foundation campaigns, and some, like former NBA star Alonzo Mourning, comic George Lopez, and former NFL star John Brockington have even launched 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?) Other celebrities have turned to the media to share their transplant experiences. Selena Gomez and her donor, Francia Raisa, gave several major interviews in 2019 on Gomez’s transplant.
Chronic kidney disease is even more common than breast cancer or prostate cancer–yet the general public knows very little about it. If more celebrities who’ve been touched by kidney disease and transplant would tell 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 successful kidney transplants (the year of their transplant is next to each name)?
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.
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.
Before my son was diagnosed with chronic kidney disease in 2004, I knew as much as most people about the subject—which is to say, almost nothing. Not sure if I even knew you can live a normal life with one kidney. Before he developed kidney failure, and I started the evaluation process for donating my kidney to him, I knew almost nothing about living donation. Now, fortunately or unfortunately, I know more than most people about these things and have made it my mission to help people learn before a crisis hits—in the hope, ideally, of preventing more such crises.
So now I find myself in a similar situation concerning liver disease and liver donation. No, thankfully, it’s not my own family this time, and I’m not considering being a living donor again in my 70s, but as always, it’s because of someone I care about. You may have read here that my friend and co-author, Betsy, needs another kidney transplant after 15 years. That was bad enough. For a while though, a few months later, there was good news when she’d found a living donor and was scheduled to have the transplant in December. Unfortunately, the good news gradually became more tentative as her health began to deteriorate and the transplant was postponed.
And now the biggest shock of all came last week when she/we learned that she also needs a liver transplant. After being stunned and saddened, I began my new education about livers and liver donation. All I knew was that, since the majority of people on the deceased-donor waiting lists need a kidney, the wait for a liver is much shorter: about a year versus 3 to 5 years (often 5-10). As for living liver donation, I knew you can donate part of your liver because it grows back but that it’s a bigger deal than donating a kidney–it’s a more serious surgery, with a longer recovery.
However, by reaching out to the Facebook donation/transplant community, reading articles, and searching online, I’ve already learned some very encouraging information. Did you know that you can donate two-thirds of your liver and it regenerates so much that within a few months, both you and your recipient have a healthy-sized liver?
I also learned that the donation surgery is easier than it used to be and that some centers have started to use minimally invasive laparoscopic surgery as is done for kidney donors. That means a much smaller incision, far less pain and blood loss—and a quicker recovery. That should make it a little easier to think about asking people to consider donating.
That’s all good news, not just for Betsy and her friends and family, but for all patients and their families and friends. Betsy certainly has a lot to deal with and is facing many difficult decisions and waiting periods. But she’s an amazingly positive person and is learning all she can and asking questions so she’ll be as informed as possible. As we always say, information is power—never more so than in matters of health.