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.”
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.
Funny how things take on a life of their own. Less than 3 years ago when I was interviewed at length on “Your Health” radio show and asked to tell my story about donating a kidney to my son in 2006, I was a bit uncomfortable with their description of me as an advocatefor living organ donation. Yes, I was passionate about the subject, never passed up an opportunity to talk about it, and was writing a book on living kidney donation, with a live-donor-kidney recipient (Betsy Crais). I’d also written a couple of op-ed pieces, but “advocate” sounded much more significant (and certainly impressive) than whatever I was doing in my own little ways.
But then I ventured out a bit and spoke at a rotary club and a couple of patient workshops. I started writing blog posts sharing my story. I began to use Twitter and Facebook to talk more generally about the 30 million Americans with chronic kidney disease and the dire need for donors—live and dead. So when two local TV news stations interviewed Betsy and me last year about our book in progress and referred to us as advocates, that time the label felt right.
And now the National Kidney Foundation has made it official, inviting me to join its nearly 200 Kidney Advocacy Committee members nationwide. The NKF advocates
Bring the patient/family voice to NKF’s legislative priorities
Serve on panels and in conferences hosted by various government agencies….
I am honored and deeply humbled to join the ranks of “donation advocates.” There’s work to be done.
I first met Brenda online a couple of years ago through a Facebook living donor support group. We were both so moved by having donated that we became strong advocates for donation awareness and went a step further in deciding to write books about donation (hers for young children, mine for adults). I was excited to meet the warm, energetic Wisconsinite in person last year in Chicago during that memorable weekend when we helped set the Guinness World Record for Living Donors. We’ve followed and cheered on each other’s donation advocacy activities ever since.
My book with Betsy Crais, “The Greatest Gift: The Insider’s Guide to Living Kidney Donation”—in its final stages as we look for a publisher—was conceived to help potential donors and recipients navigate the donation/transplant process and the emotional challenges. If you think we adults have trouble grasping and dealing with donation, transplant, and dialysis in the family, just imagine how bewildering the topic is for little kids. So, I’m delighted to see that Brenda’s children’s series on donation has really taken off. The books, most of which star an adorable little owl named Howl (which stands for Help Others With Love), help kids make some sense of these frightening situations, whether they’re experiencing the condition themselves or, more commonly, a parent or grandparent is.
Brenda’s first book, “My Mom Is
Having Surgery,” was prompted by her daughter’s college application essay
that told how inspired she was by her mother’s donating her kidney a few years
earlier to another mom she’d known only casually. Not long after the first
book, Brenda created Howl to help spread her message of kindness and awareness
of organ donation. Among the titles, which are delightfully illustrated, are “Howl
Gets a Heart” (yup, the little guy is a transplant recipient!) and “Howl Learns
About Kidneys and Dialysis”; her latest is “Howl Goes to the Races,” where he
gets to meet race car driver and organ donation advocate Joey Gase on the
occasion of Organ Donation Awareness Day.
Part of the proceeds from sales of all of Brenda’s donation books, and the popular plush Howls, go to support Donate Life America https://www.donatelife.net/books/. Brenda has taken Howl and his message several steps further: the plush Howl goes along with her to blood donations, reassuring visits to kids in the hospital, educational school fairs, elementary school classroom readings, the biannual Transplant Games, donation walks… he gets around.
In fact, a Howl mascot has become a popular figure at community events in Wisconsin and on Brenda’s travels. She’s incredibly industrious: she ordered a mascot costume online and then had it transformed into Howl. Brenda would love to be able to send it off when events request his presence, but the shipping costs are prohibitive. That’s why she’s looking for a sponsor whose name could be displayed on the back of Howl’s tee shirt, to defray the costs. If you or your organization might be interested in promoting this charming donation mascot and/or helping to get the books into hospitals and transplant centers, you can reach her at Brenda@howltheowl.com
In recent months, Howl has even become a world traveler. Fellow donor (and one of the organizers of the Living Donor Rally) Kate Griggs has helped coordinate sending a little plush Howl on overseas trips with living donors, along with Howl’s very own business cards (much cuter than mine, by the way), and banners promoting living donation.
Thank you, little Howl, for
spreading the word about organ donation and helping to make the world a kinder
place. Can’t wait to meet you in person!
that April is over, so is Donate Life Month. No more special themed
events, signs, and PSAs. But the need for organ donors is hardly over:
about 114,000 people are still spending years on national waiting lists
for a lifesaving organ. Even though it’s at an all-time high, organ
donation still falls way behind the need. About 6,500 people on those
lists die each year simply because they didn’t get the organ they needed
in time. About 16 people die each day because they didn’t get a kidney
in time. Sixteen people.
What can we do about it? First step, of course, is to sign up to be an organ donor after we die. If you’re not already registered, no need to wait for your driver’s license renewal. Just go to registerme.org or organdonor.gov. You can even do it on your iPhone’s health app.
Second step is to tell your family you did. People unfortunately often neglect to make their wishes known to family members, who must confirm the decision and, if there is any ambiguity, at a time of grief, can sometimes overrule the registration.
Third step is to spread the word. Donate Life Month or not, tell everyone you know about the need. I’m always surprised at how little the general public is aware of the crisis.
Fourth step is obviously the hardest, but it’s on the rise and holds the key to shortening the wait for thousands of patients: consider becoming a living donor. A healthy person can donate a kidney (by far the most common living donation), as I did, or a part of their lung, liver, intestines, blood, or bone marrow. I’m not suggesting such a decision be made lightly. Just take a small step and educate yourself on the subject–check out the Resources on this site–and see where it goes.
I just bet you’ll find a number of surprises, so then share what you learn with everyone you can. Maybe you’ll prompt someone else to donate.
Here are a few important “facts” about organ donation. Test yourself—and let me know how you did! (Not to worry–I’ll grade on a curve.)
1-Most of the 113,000+ people on the national waiting lists for an organ from a deceased donor are waiting for a heart.
False. More than
80% of them are waiting for a kidney.
2-In the United States, the wait for a kidney from a
deceased donor is a matter of months.
False. In many
areas of the country, it’s 5 to 10 years.
3-Every year a few hundred people die because they didn’t
receive a lifesaving organ in time.
6,500 people on the lists die while waiting for a kidney each year.
4-A large percentage of people in the United States can be
organ donors when they die.
False. Only about
3 in 1,000 people die in such a way that they can be organ donors: generally, in a hospital following a trauma
such as a car accident. That’s just 0.3% (yes, I had to look it up).
5-Most living donors are men.
False. Nearly 2/3 of living donors are women.
So, if you’re not already a registered organ donor, you needn’t wait till you renew your driver’s license. You can do it online right now at registerme.org. (There you’ll also find more facts about donation.) And if you’d ever wondered why the wait for a deceased-donor organ is so long, and why donation advocates hope that more people will consider being live donors, now you know the bottom line. There simply aren’t enough organs available.
As part of National Donate Life Month events, I joined Donate Life NC exec director Deanna Mitchell Sunday at Rush Cycle in Morrisville, NC. In keeping with the month’s theme of Life Is a Beautiful Ride, Rush was offering free cycling classes and gave us a prominent spot to talk about organ donation and share our story of being living donors. I was delighted at the enthusiastic reception and animated conversations with the cyclers (I’d wondered if they’d just ignore us, frankly). See the back of our tee shirts–we’re also proud WELD members: that’s Women Encouraging Living Donation. And check out the photo from our WELD meeting in Durham Tuesday https://tinyurl.com/y2fvbe8x! One of the members had just donated a couple of weeks before!