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.

Photo by Pixabay on Pexels.com

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. Check 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?

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

  1. More than a third of living kidney donors are over 50 years old (I was 58 when I donated to my son), and the proportion is rising.
That’s me, right before a memorable trip to Chicago to help set a Guinness World Record for largest gathering of living donors.

2. Most living donors 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–represent only about 3% of living donors in the United States, but the percentage is on the rise.

5. Nondirected donors often save multiple lives by initiating a swap (aka a paired donation) 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 dogs. (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).

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.

Reimburse Living Donors’ Lost Pay–and More

Several months ago I was excited to learn that financial assistance for living donors was going to be substantially expanded—encompassing more people and for more kinds of noncovered expenses, like lost wages, childcare, and eldercare. As a living donor and advocate, last year at this time I provided public comment on the subject and followed up with emails to members of Congress. In July the incredible Executive Order on Advancing Kidney Health touted a major expansion of reimbursement for donor expenses, in addition to efforts to improve early detection of chronic kidney disease, encourage medical innovation, and lots more.

The devil is always in the details, which take time. Ever since, I’ve been eagerly awaiting the good news. The current financial eligibility limit, at 300% of poverty line (or $38,000), has long been way too low. Advocates have argued persuasively for increasing that to 500% ($64,000)–ideally 600%–to be able to serve the majority of living donors rather than a small fraction. For donors who don’t have paid sick leave, these extra expenses are often a deal breaker for people who might otherwise volunteer to save a life by donating their kidney.

Photo by Skitterphoto on Pexels.com

The proposal they came back with this week offers just pocket change: a tiny increase in the eligibility cutoff to 350% (or $45,000)!

Also, wait for this: the assistance is still tied to the recipient’s income, not the donor’s. So it does an injustice to both potential donors and recipients by putting the onus on the latter to reimburse the donor for nonmedical expenses (testing and surgery are covered by the recipient’s health insurance, be it private, Medicare, or Medicaid). The government apparently thinks it reasonable that the family of the recipient, desperately trying to find a living donor and incurring all sorts of costs themselves, when they’re facing major surgery, should have to worry about trying to reimburse their potential donor.

There’s another glitch in tying eligibility to the recipient’s income—what about nondirected donors (those who decide to donate to an unknown recipient they may never meet)? They’re out of luck here. Now, wouldn’t you think you would want to roll out the red carpet for these Good Samaritans instead of shutting an aid door in their faces?

The Executive Order was clear in its intention to expand assistance to encourage living donation. So if you’re a donor or are considering donating–or you’re a kidney patient looking for a donor…please email Frank Holloman at donation@hrsa.gov and tell him that HRSA (the federal Health Resources and Services Administration) needs to go much further in supporting living organ donors. Come to think of it, no matter what your connection to living donation is, contact HRSA, please!

“Why I Advocate” (the Video)

The National Kidney Foundation asked us advocates to make a video on Why I Advocate. Now, for me, making a video sounded pretty daunting. The message part wasn’t the problem. I wrote that fairly quickly once I decided to keep it simple. Instead of focusing on living donation, I would just talk about chronic kidney disease awareness and how I came to donate my kidney to my son.

With my son (Paul) and husband (Neil) at an NKF Kidney Walk in Durham, NC, in 2016.

I’ve always thought I have two valuable simple points to add to this discussion. One is that, as you may already know, I’m a wimp. I’m hardly a brave, extroverted natural risk taker. I think that can resonate with a lot of people and maybe belies some myths about living donors.

The other is about my son, who doesn’t fit the image that most people have about those who suffer from chronic kidney disease. For starters, he was young, thin, and otherwise healthy when he developed it in college. A lot of people figure that if you don’t have a family history of kidney disease (we don’t), and you’re not obese or have diabetes or high blood pressure, it’s not something you need to think about. Wrong!

Watch my brief video to see why. (And yes, I even managed to make a video on my laptop!)