Preparing The Greatest Gift

My co-author, Betsy Crais, and I have been busy making revisions and updates to our book manuscript (The Greatest Gift: The Insider’s Guide to Living Kidney Donation). With the pandemic necessarily dominating the news and publishing world, this seemed like a good time to concentrate on honing our manuscript rather than sending out proposals. As we prepare the final chapters, we’re noticing some key trends since we started working on it 5+ years ago (back when we were both working full time and unable to devote much time to it):

Social media is playing a bigger and bigger role in kidney patients’ search for donors. I get requests every week to “like” a page to help someone find a donor. The National Kidney Foundation’s Big Ask/Big Give workshops, which Betsy and I have addressed in Chapel Hill and Raleigh, NC, encourage and train kidney patients and their families and friends in how to get the word out that way.

Potential donors are learning that they don’t have to be related to their recipient. Perhaps because of the social media involvement, more nonfamily members are volunteering to donate to a friend, neighbor, or colleague. Antirejection meds have come so far that, though well-matched pairs still offer the best chance of long survival, the so-called “perfect match” is far from being a requirement for a kidney transplant.

Paired donation (aka “kidney swaps”) have really taken off. Let’s say, you want to donate to Alice but you’re not a match; maybe Jane, who wanted to donate to Bill but couldn’t, can donate to Alice and you can donate to Bill. Computer formulas and kidney registeries make it all possible. In 2006, when I donated to my son, paired donation wasn’t even on our radar, and no wonder: there were only 72 such transplants in the United States that year. In 2019, there were 1,118! It doubled just in the past 5 years.

Nondirected donors are playing a bigger role. These rare individuals (a few hundred each year in the United States) make the selfless decision to donate to someone they don’t know–and may never meet. Sometimes their donation can initiate a domino chain of kidney transplants across several transplant centers.

As we start to wrap up The Greatest Gift, I may post a few samples here from time to time.

Donation and Hollywood Endings

When we see a movie or TV show on a medical topic we know a lot about, we may roll our eyes when they take dramatic license, but we often just shrug it off. When the subject is something people are less familiar with, like organ donation and living donation, a flawed story can make a lasting and dangerous impression. Donate Life Hollywood is trying to do something about it.

Story lines that mislead and even scare people (like a macabre thriller about an organ recipient) from registering as donors can cost lives. With 112,000+ people usually waiting years for an organ from a deceased donor in this country, every time someone decides not to register as an organ donor, the wait is that much longer. Donate Life Hollywood wants to hold Hollywood accountable and offer filmmakers accurate, real-life stories from donor families, recipients, and living donors.

You can download the free app, which offers an easy, convenient way to “report-a-myth.” The app lets me know when a new movie or TV episode with a donation-related story is about to air, so donors and advocates like me can check it out and let them know if the writers got it right. The app also includes up-to-date information on organ, eye, and tissue donation, with FAQs, and resources. C heck out the Activate App here.

Admittedly, some exciting aspects of medical dramas are comparatively innocuous. One of my favorite TV shows years ago was “ER.” My heart would race as my favorite docs ran out to the parking lot when an ambulance pulled up. I think I knew that wasn’t happening much if ever in real life. (That certainly wasn’t the case when we came tearing up to the hospital 30 years ago as I was giving birth to my daughter in a Subaru—but that’s another story.)

There are already plenty of harmful myths about organ donation and living donation—we can’t afford to let Hollywood perpetuate them. Let’s help educate the story makers and be part of the solution!

Did You Know? Pass It On!

Whether you’re a donor, a potential donor, or a kidney patient looking for a donor, here are a few intriguing facts everyone should know about living donors:

More than a third of living kidney donors are over 50 years old (I was 58 when I donated to my son 14 years ago), and the proportion is rising.

That’s me, right before a memorable 2018 trip to “the Bean” in Chicago to help set a Guinness World Record for largest gathering of living donors.

2. Most living donors, like me, say they would do it again (often adding “in a heartbeat”).

3. Many living donors were inspired to donate to someone they didn’t know because of an eye-opening article they read or a moving Facebook post that resonated with them.

4. Nondirected donors–empathetic people who choose to donate to someone they don’t know and may never meet–now represent about 3% of living donors in the United States, but the percentage is on the rise.

5. Nondirected donors can save multiple lives by initiating a swap (aka a paired donation, as a friend did in advance for her son)–or even a chain of transplants. If Donor A isn’t a match for their intended recipient (Recipient A), but the nondirected donor is, he or she donates to Recipient A, and Donor A donates to someone else who wasn’t a match for their recipient, and so on.

6. Most living donors (in an informal survey) own rescue pets. (A shout-out to WELD San Diego for that interesting statistic!)

7. And, of course, most living donors are women (another shout-out to WELD, which, by the way, stands for WoMen Encouraging Living Donation–yes, they now include men in their growing ranks).

Donors Need to Know All the Good News, Too

I just saw that this site’s views for April were the second highest since I launched the website 14 months ago. I noticed something else: the record month, October, happened to feature the same blog I posted about last week on Twitter and in a couple of living kidney donor support groups on Facebook: “Just How Unlikely Is It for a Donor to Need a Transplant?” (spoiler alert: very!). The obvious explanation here is that everyone loves good news, but the less obvious realization was that so many kidney donors didn’t already know that.

It’s important for living donors and potential living donors to have all the facts, including the bad, of course. But informed consent means it’s just as important that everyone know the encouraging news about living donation without sugarcoating it.

Another example of “neglected good news” is that the lower kidney function that’s common among living donors does not mean we have stage 2 or 3 kidney disease. eGFR, the scale that estimates overall kidney function and level of chronic kidney disease, really speaks of people, usually with two kidneys, whose kidney function is in decline. Donors, on the other hand, once they stabilize after donation, hit a new normal, which, in the absence of other indicators, is perfectly fine.

More important is the creatinine reading, which indicates level of toxins and reflects how well the kidney is working. For example, nearly 14 years after donating to my son, I still have an excellent creatinine level (0.85 on a recent test)–not just excellent for a donor, excellent for anyone!

I’m all for learning all the information that’s out there, and hope to see long-term lifetime follow-ups on all living donors. But in the meantime, we can all use a little reassurance these days. Let’s take it where we can.