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Selena Gomez: Are You Vaccinated?

I trust that you are because you’ve spoken out against COVID vaccine misinformation. In the winter, I wrote about the importance of everyone getting vaccinated, particularly transplant recipients like Stevie Wonder, Selena Gomez–and my son. In the spring, we learned that organ recipients, who must take immunosuppressants to keep their body from rejecting the gifted … Continue reading Selena Gomez: Are You Vaccinated?

Who Are We (Living Donors)?

Several months ago, I wrote here about co-writing a Patients’ Foreword for a medical textbook, Living Kidney Donation: Best Practices in Evaluation, Care and Follow-up. The following excerpt from the foreword, addressing transplant professionals, describes us living donors simply and honestly: Who are we? We’re loved ones: mothers and fathers, wives and husbands and partners, … Continue reading Who Are We (Living Donors)?

A Third Shot Could Be the Charm

We suspected—and, of course, feared–that my kidney recipient son’s two COVID vaccine doses hadn’t worked, as is the case for most immuno-compromised individuals. Then he had an anti-spike test, which specifically shows whether a person has developed antibodies in response to a COVID vaccine. His results were negative: he had no antibodies. So we’ve been … Continue reading A Third Shot Could Be the Charm

“Insider’s Guide to Living Kidney Donation”: Take a Peek Inside

As we get so much closer to publication, we’re eager to share another peek at the book. Here’s an excerpt: the opening for chapter 1! AN OHIO COUPLE transform their van into a cruising billboard, a woman in Pennsylvania posts her blood type on Facebook, a man offers thousands of dollars online . . . … Continue reading “Insider’s Guide to Living Kidney Donation”: Take a Peek Inside

We Need the LDPA: Best-Case Scenario Is Hardly Good Enough

The Living Donor Protection Act (LDPA) of 2021 was first introduced in Congress back in 2014 and has been making its way through successive congressional sessions ever since. The act would protect healthy living donors like me from discrimination by insurers (including rejections and higher premiums) and would protect the job of an employee who … Continue reading We Need the LDPA: Best-Case Scenario Is Hardly Good Enough

Have You Heard This One?

As someone who’s always tried to find the humor in serious situations, I can attest that even kidney donation can include some laugh-out-loud moments. I know I’m not alone, as I wrote last year in a blog post on hilarious questions and comments that fellow living donors on Facebook have heard. Example: “OMG, they didn’t … Continue reading Have You Heard This One?

“The Call”!

Big news: My friend and co-author, Betsy Crais, just got “the call” she’s been waiting for ever since her first (live-donor) transplanted kidney failed more than a year ago–after 15+ years. She is now the proud and very grateful recipient of a healthy kidney and a liver from a deceased donor. She is recuperating well. … Continue reading “The Call”!

My Do’s and Don’ts for Advocacy

Had a very full–and rewarding–day of meetings with congressional staffers and fellow National Kidney Foundation advocates last week as part of NKF’s Virtual Kidney Patient Summit, which drew nearly 250 advocates. We shared our personal connections to kidney disease and briefly outlined kidney-related legislative priorities. My group’s first meeting of the day was with Nora … Continue reading My Do’s and Don’ts for Advocacy

Talking about Books

I have so much to report this week as our book The Insider’s Guide to Living Kidney Donation makes its way to publication. Our copy editor is finishing up the detail work, and several people we admire in the donation and kidney community are reading the manuscript in preparation for writing back-cover blurbs! I’ll keep … Continue reading Talking about Books

Living Donors: What Do You Think About COVID Vaccines?

Last week I wrote about issues surrounding kidney recipients’ getting a COVID-19 vaccine. In it I offhandedly mentioned that risks and priority currently aren’t considered particular issues for living donors. So I’ve been trying to get an appointment for a COVID vaccination ever since the eligibility in my state opened up to include people over … Continue reading Living Donors: What Do You Think About COVID Vaccines?

Should Kidney Recipients Take the COVID Vaccine–and When?

This week I attended a National Kidney Foundation webinar that answered questions about kidney patients and the COVID vaccine. As the mother of a kidney transplant recipient (my recipient, actually), I naturally have a particular interest in the topic. As a living donor, though, it doesn’t appear that I have any reason to need or … Continue reading Should Kidney Recipients Take the COVID Vaccine–and When?

“Good News” on Immuno Drug Bill Is Now Great News!

The good news in my last post was that the House had passed the Immuno Drug Coverage bill extending Medicare coverage for kidney transplant recipients’ medications past 3 years. Next step was the Senate. I’m thrilled to report now that after nearly 20 years of advocacy by the transplant community, this bill is finally going … Continue reading “Good News” on Immuno Drug Bill Is Now Great News!

Good News on Immuno Drug Bill

So glad to have good news to report on the Immuno Drug coverage bill that would extend Medicare coverage of anti-rejection meds for people not otherwise eligible for Medicare. The bill passed the House last week with strong bipartisan support (that alone is worth cheering) as part of the BENES Act (Beneficiary Enrollment Notification and … Continue reading Good News on Immuno Drug Bill

It’s Great to See More Financial Aid for Donors…But

The news this week that the National Living Donor Assistance Center, or NLDAC, had expanded its eligibility and its benefits is certainly welcome and long overdue. I remember submitting (and later posting here) my public comment on its proposals back in May 2019. The changes are well worth cheering about: for starters, the income-level cutoff … Continue reading It’s Great to See More Financial Aid for Donors…But

Kidney Donors Don’t Get Paid, But the Rewards Are Very Real

In previous posts, I’ve described some of the enormous benefits of a live vs. deceased-donor kidney transplant for the recipient, but did you know that there are many very real benefits to the living donor, too? For family members or couples, the benefits are nothing short of dramatic. And I’m not just talking about feel-good … Continue reading Kidney Donors Don’t Get Paid, But the Rewards Are Very Real

Wear a Mask! The Life You Save May Be My Son’s

As a kidney recipient, my son, Paul, and other transplant recipients have to take essential anti-rejection medications to keep their bodies from rejecting the precious new organ they were given. Unfortunately, to avoid rejection, the meds have to lower the body’s natural immune system. The trick is to do that without the recipient’s getting an … Continue reading Wear a Mask! The Life You Save May Be My Son’s

Real Funds and Real Sun for a Virtual Kidney Walk

Well, my husband, son, and I participated in the 2020 North Carolina virtual kidney walk this weekend. Yes, it was different from all the others we’ve walked in, but many things were familiar. Most important was the opportunity to raise sorely needed funds for kidney disease research and awareness. By the end of the day, … Continue reading Real Funds and Real Sun for a Virtual Kidney Walk

Still Walking After All These Years–But Virtually

Another Kidney Walk date is approaching: Sunday, November 15. My husband, son, and I (our daughter’s up in Brooklyn) will be “there” as usual. Because of the pandemic, this year everyone will be walking in their own neighborhood or location of their choice in the 2020 North Carolina Virtual Kidney Walk. That’s a first. We’ve … Continue reading Still Walking After All These Years–But Virtually

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 … Continue reading Rewrapping the Greatest Gift

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, … Continue reading Celebrity Kidney Recipients: Please Share Your Stories!

Zooming into DC for a Unique Virtual Kidney Patient Summit

Instead of flying to Washington, DC, in March with other advocates for the National Kidney Foundation Kidney Patient Summit as planned pre-COVID, we Zoomed and Hopped in last week for virtual meetings on Capitol Hill. Admittedly, virtual was less of a kick than the real thing, but it was surprisingly effective in garnering cosponsors for … Continue reading Zooming into DC for a Unique Virtual Kidney Patient Summit

Helping Donors and Would-Be Donors, 1 Visitor at a Time

Well, this is exciting: I just hit the 5,000-visitors mark–and more than 7,000 views! I launched this site officially last year with a blog post, fittingly, on National Kidney Month and National Women’s Month–and what these amazing specimens have in common. As a living kidney donor myself (I donated to my son in 2006), my … Continue reading Helping Donors and Would-Be Donors, 1 Visitor at a Time

Don’t All Donors Deserve Donor Shield?

I’ve been emailing, calling, and visiting state legislators and members of Congress for a long time about supporting and protecting living donors. I don’t mean the feel-good kind of support that calls us “heroes” and “awesome folks” but takes no action. I’m talking about finding meaningful ways to remove hurdles that can be deal breakers … Continue reading Don’t All Donors Deserve Donor Shield?

A Time to Celebrate

I think it’s only fair to warn you that this short post has absolutely nothing to do with kidneys, organ donation, or advocacy. But today is a special day, and attention must be paid. Today, amazingly, marks 50 years since my husband and I got married on a rainy Friday night in New York City. … Continue reading A Time to Celebrate

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 … Continue reading Preparing The Greatest Gift

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 … Continue reading Reimburse Living Donors’ Lost Pay–and More

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 … Continue reading Celebrating Milestones

Happy National Kidney Month and National Women’s Month!

Yes, March is National Kidney Month and National Women’s History Month. What do kidneys and women have in common, you ask? For starters, both are underappreciated. We can hope that someday we will get to a point where we don’t need to introduce people to integral aspects of our culture and our history (like Black … Continue reading Happy National Kidney Month and National Women’s Month!

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, … Continue reading Celebrity Kidney Recipients: Please Share Your Stories!

Happy National Donors Day!

Happy Valentine’s Day AND National Donors Day! You don’t need to be a living donor like me to be able to someday save a life–or several, in fact. If you don’t have that little heart on your driver’s license and haven’t already registered as an organ donor, please don’t wait to renew your license: go … Continue reading Happy National Donors Day!