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!

Coronavirus, Kidney Patients, and Everyone Else

If you’re reading this, chances are you’re considering donating a kidney or have already done so–but you also very likely know and care very much about someone who has chronic kidney disease (in my case my son, Paul, and my friend/co-author, Betsy, for starters). Or maybe you have it yourself.

With kidney patients at a high risk of contracting COVID-19–whether they are transplant recipients, are undergoing dialysis, or contemplating treatment–this is a particularly important issue for all of us and others in the kidney community. I hope that you will share the resources below with your friends and family so that they can remain safe and healthy. These materials are provided by the National Kidney Foundation (NKF) and offer advice on keeping healthy during this horrific pandemic. These links will be updated as needed.

Photo by rawpixel.com on Pexels.com

The latest information and best practices to be prepared for COVID-19: https://www.kidney.org/…/be-prepared-kidney-patient-prep-co…
Information to help kidney patients and their families respond to emergency situations: https://www.kidney.org/help

And a blog post from NKF’s CEO Kevin Longino on Covid-19 and the kidney community: https://nkfadvocacy.blog/…/supporting-you-during-the-coron…/

Whatever your own health status, and wherever you live, please stay safe and closely follow recommendations and requirements in your area. Also, here’s clear, valuable information on the virus from someone who knows more than anyone on the subject, Dr. Anthony Fauci, interviewed by Trevor Noah. https://youtu.be/8A3jiM2FNR8

Celebrating Milestones

Most of my kidney-related milestones mark the number of years since I donated to my son (2006), who was diagnosed with chronic kidney disease when he was in college. This month I get to celebrate a different kind of milestone: one year since I launched this website! I didn’t know what to expect when I set out to lend a helping hand to anyone who might remotely be considering being evaluated as a living donor. I wanted to offer reliable, accessible resources about donation, offering the candid perspective of someone who’d been there.

It’s been a rewarding learning process all the while, and I am fairly pleased with the results and the response. At this point numbers may not mean much, but they’re still pretty interesting. Here’s what the numbers tell us about the response (as of March 2020):

Photo by Black ice on Pexels.com

Visitors: 3,000+

Views:  nearly 5,000

Countries: 41; the vast majority of visitors are naturally from the U.S., but Canada, the U.K., India, and Australia each had more than 50.

Ranking: no. 9 of “Top 30 Kidney Donor Blogs, Websites & Influencers in 2020”

Top Posts:

Just How Unlikely Is It for a Donor to Need a Transplant?

            Wondering Who Gave a Kidney to Stevie Wonder?

            Kidney Swaps and Vouchers and Chains, Oh My!

            What Do These Celebrities Have in Common?

            5 (Big) Benefits of Live Donation—For the Donor

Here are a few posts that I wish had gotten more attention:

            Howl the Owl and Brenda Cortez Help Kids Grasp Organ Donation

            Kidney Vouchers Are Even Cooler Than You Thought

            Health Materials in Plain English

            Health Information Is Power!

Thanks so much for reading my posts and following me. Please let me know what topics or features you’d like to see on this site.

Kidney Recipient/Goalie Goes for the Green

Just read another wonderful piece about the kidney recipient/hockey goalie, David Ayres, who helped win the game for the Carolina Hurricanes last month. The fascinating stories have brought much-needed attention to kidney disease and transplant. In his honor, the Hurricanes sold No. 90 shirts, and part of the proceeds is going to the National Kidney Foundation in North Carolina.

Now Ayres is using his newfound fame to promote organ donation generally, with a different kind of shirt: a month-long campaign to support “Green Shirt Day” in Canada. The campaign honors the memory of Logan Boulet, a young Humboldt Broncos ice hockey player killed in a team bus crash in 2018. His organ donation prompted thousands of Canadians to register as organ donors. They call it the “Logan Boulet Effect.”