Rewrapping the Greatest Gift

If you’ve been following this blog and are familiar with my site, you already know that I’ve been writing a book on living kidney donation with a live-donor kidney recipient, Betsy Crais. It’s long been tentatively titled The Greatest Gift: The Insider’s Guide to Living Kidney Donation. Now that we’re down to the review process and planning for publication in 2021, we’ve made a big decision.

This book has never been just for people considering donating a kidney. We’ve always looked at our task as lending readers a hand before, during, and after the actual surgery. Similarly, there’s plenty in there for people living with end stage renal disease (kidney failure), throughout the transplant process (including dialysis) and beyond, as we touch on delicate family dynamics and relationships.

Anyone who has experienced donation or transplant–or has a loved one who has–knows that both are so much more than medical decisions and events. That’s why we wanted the title to reflect the book’s broader role. So, drum roll please, our new title is The Insider’s Guide to Living Kidney Donation: Everything You Need to Know If You Give (or Get) the Greatest Gift.

Watch this space for more news. We’ll let you know when we have a specific publication date.

Donors: Your New-Normal Numbers Are Just Fine

Being well informed about living donation before you donate a kidney is obviously extremely important, but it doesn’t stop there. Continuing to be well informed is not only good for your physical health but your mental health as well.

Through social media donor support groups, I continue to hear of some donors being told that they have stage 3 chronic kidney disease, purely on the basis of their eGFR (an estimated formula for kidney function). One stunned donor said she cried all night. Before you conclude that her “disease” was a result of kidney donation, I hasten to add that she and other such donors usually have normal kidney function and no kidney disease. In other words, as researchers have demonstrated, in the absence of other factors, donors’ slightly low readings are just the new normal for them. That’s particularly true in the months following donation, and their readings may well improve.

These donors’ primary care providers—and sometimes even nephrologists—were referring to a scale based on people with two kidneys and/or diseased kidneys. 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. However, at my last check-up, 14 years after donating my kidney to my son, my eGFR was 69 (normal for anyone 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 my creatinine?), and always remind your provider that you have one kidney. If they’re still unconvinced, refer them to a paper that makes it clear that low GFR does not mean kidney disease in donors.

Celebrity Kidney Recipients: Please Share Your Stories!

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)?

Stevie Wonder, Dec. 2019 (he says he feels “40 right now”!)

Ed Kranepool, 2019

Selena Gomez, 2017

Tina Turner, 2017

Sarah Hyland, 2012 and 2017

Tracy Morgan, 2010

George Lopez, 2005

Alonzo Mourning, 2003

John Brockington, 2002

Sean Elliott, 1999

I wish them all continued good health with their adopted kidney. My son has had more than 14 years with his (that is, mine).