A short while ago I came across “The Top 30 Kidney Donor Blogs and Websites to Follow in 2019.” It lists individual personal blogs from donors and recipients, plus from major organizations (nearly half of the websites listed, in fact) like the National Kidney Foundation and the National Foundation for Transplants. Last week I noticed that there was a way to submit a blog, and I did. So, guess who’s #10 on the Top 30 list now?
Sure, the Top 30 is a marketing vehicle, but it’s also a convenient way to find interesting donor-related blogs; you can click to see their latest posts. Each listing also tells how frequent the blog posts are (mine average four a month), the number of Twitter followers (I have a modest but growing 280), and such.
This blog went live just several months ago, in March 2019. I’ve been delighted to see how well it’s been received. I didn’t know what to expect in terms of number of views and visitors, but I’m pretty pleased to have surpassed the 3,000-views mark (and more than 1,700 visitors).
I’ve enjoyed sharing my living-donor experiences and recipient-family insights with you; helping to encourage living donation–not by proselytizing but by offering candid, clear, practical information; and fighting to protect the rights of kidney patients and donors (for example, check out these blog posts). I’m very glad that more people may find their way here.
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 hope everyone knows that no one is too old in principle to be an organ donor when they die. And that’s becoming truer of living donors, too. When I donated my kidney to my son 13 years ago I was 58, which is hardly ancient (actually, it seems downright young to me now!) but seemed “old” at the time. Now, more than a third of donors are over 50. Donors in their 60s are increasingly common, and I’ve known of many people who donated in their 70s. The common wisdom has always been, it’s not the donor’s age that matters but the kidney’s health and the donor’s overall health. So I’m happy to say that the record for oldest living kidney donor was set recently when an 84-year-old man in Texas kindly donated his kidney to his neighbor. Admittedly, it wouldn’t have been a great option for most 30-year-olds, but it was a perfect gift for his grateful 72-year-old recipient with lupus. Read more in this very touching and informative story.
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.
1-People with kidney failure have dialysis every few weeks.
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
advanced as it is, dialysis accomplishes only about 20% of normal kidney
4-People on dialysis can skip a few sessions if they’re
busy or go on vacation.
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.
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.*