Howl the Owl and Brenda Cortez Help Kids Grasp Organ Donation

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.

Brenda and Howl pose with a visitor to her table at an event. Howl has helped kids of all ages make sense of organ donation.

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!

Who Says Donate Life Month Is Over? It Needn’t Be!

Now 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.

Donate Life Month Quiz: 5 True or False about Dialysis

True or false?

1-People with kidney failure have dialysis every few weeks.

False—For hemodialysis at a dialysis center, the standard is 3 times a week; patients who have some form of dialysis at home may do it 4 to 7 times a week.

2-Dialysis sessions usually last 3 to 4 hours at a time.

True—The average session at a dialysis center is 4 hours on the machine. (That’s not counting the weigh-ins and pre- and post-blood pressure readings. ) Again, people who do it at home may vary the amount of time, including an option of doing it overnight while they sleep.

3-Dialysis can approximate about half of kidney function.

False—As advanced as it is, dialysis accomplishes only about 20% of normal kidney function.

4-People on dialysis can skip a few sessions if they’re busy or go on vacation.

False—Skipping a session very occasionally is not usually a problem, but skipping several sessions is extremely dangerous and can be fatal as toxins build up in the blood. Patients who go out of town can try to arrange in advance to have sessions at a dialysis center at their destination.

5-Dialysis is an equally effective alternative to transplant for someone with kidney failure.

False—When possible, a kidney transplant is by far the better option. After one year of treatment, patients on dialysis have a 20-25% mortality rate, with a 5-year survival rate of 35%. People who receive transplants have a 3% mortality rate after 5 years.*

*University of California at San Francisco. The Kidney Project, https://pharm.ucsf.edu/kidney/need/statistics

Guinness Living Donors Record!

Woohoo! Got my commemorative living donors rally tee shirt in the mail, and it has my name on it with the other Guinness record holders! If you zoom in, you just may be able to find my name in the upper left quadrant–alphabetized under “C.”

What a memorable weekend that was! Several living donors gathered at the Bean again this year for an informal reunion. On one hand, I was sorry to miss it–I would have loved to see so many people I met last year. On the other hand, though, I’d kind of like to keep that warm memory special. A reunion couldn’t possibly capture the excitement and the emotion, which I tried to describe in a Facebook post soon after it.

Donate Life Month Quiz: 5 True or False

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.

False. About 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.

5 (Big) Benefits of Live Donation–for the Donor

In my post last week, I explained some of the enormous benefits of a live vs. deceased-donor kidney for the recipient, but did you know that there are real benefits to the donor, too?

For family members or couples, they are nothing short of dramatic:

1-To see a loved one who’s been pale, weak, and often listless for many months or years gradually become their old self again is pretty powerful. And a partner who wasn’t interested in intimacy during the period when he or she was on dialysis may now discover a new bond.

2- A spouse or parent whose ability to work was limited for a long period may soon resume a full-time schedule–or even launch a new career–to substantially improve the family’s finances.

3-Couples that have been uncomfortable for a long time about socializing—whether because of specific obstacles or simply due to the patient’s lack of energy or interest—will soon be able to enjoy evenings out with friends or family.

4- If the donor has been the caregiver, the reduced stress and no doubt improved sleep can have considerable benefits in mood, overall outlook, and even job satisfaction.

For family members or anyone who donates a kidney—even to a stranger–the benefits are universal:

5- The feeling of personal gratification is indescribable. Knowing that you’ve helped give someone—anyone—a chance at a healthy, productive life—is an extraordinary feeling. 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 nearly all 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 risk might do well to acknowledge the undeniable benefits for certain donors as well.

“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.