As part of National Donate Life Month, I’ve written recently about the public’s preconceived erroneous notions about organ donation–both living and deceased. These myths tragically keep the numbers of donors down and the number of needless deaths up. More than 100,000 people in this country need a lifesaving organ, for most of them a kidney. Thousands die each year while waiting–or are removed from the list because they have become too sick to benefit from a transplant. I just read a memorable novel that’s been on my radar for a long time (I remember meeting the author, Robert Horsey, in 2018 ..read more

If you finished the statement by saying “saints,” then you’re just the reader I’m looking for. I want to dispel that very idea! Please read on. How about living donors are…”risk takers”? That one too. You see, so many people have preconceived notions about us living donors, that I think it gets in the way of more people even considering the possibility of doing it themselves. With nearly 100,000 people waiting years for a deceased-donor kidney, and more than a dozen dying each day while waiting, we clearly need to increase the fairly static number of living donors: roughly 6,000 each year. The ..read more

I just figured out that I’ve now participated in more than thirty advocacy (aka lobbying) meetings for the kidney community, mostly at the federal level. My recent meetings in DC for the National Kidney Foundation’s Kidney Patient Summit definitely stand out. I thought I’d share some observations. At their worst–perish the thought!–such meetings risk being dry, one-sided recitations of our “asks” (often cosponsoring legislation, signing on to a letter, voting to increase research funding) while a well-meaning but harried staffer listens quietly, taking notes, followed by our rushed awkward eff ..read more

Last year at this time I excitedly announced here that I’d be going to Capitol Hill–in person!–for legislative meetings as part of the National Kidney Foundation’s Kidney Patient Summit. Because of the pandemic, the previous several summits had been virtual–important, productive, yes, but no substitute for the real thing. I surprised myself by writing that though the logistics of getting from point A to point B, and so on, made me nervous, I realized that the actual meetings didn’t phase me. I explained that multiple trainings and meetings had driven home the message that personal stories of ..read more

Every year before I make new new year’s resolutions, I try to look back to see how I did on last year’s. Alas, they’re almost always still relevant. I don’t think I’m unusual in that respect. I know that starting next week, for example, my Zumba classes and the workout area of my gym are going to be jammed. I used to be concerned but soon saw that in a matter of weeks, the crowds invariably start to thin, and by late February they’re always back to near-usual levels. So, I thought I’d dust off my old new year’s resolution blog post and share these again. They’re relevant for everyone–if you’re ..read more

My tastes in reading have always been pretty varied. I was never much of a history buff, but I discovered a back door through well-written, riveting memoirs and biographies. Similarly, though I don’t have a science background, I’ve learned so much about organ donation and transplantation through authors’ personal and professional experiences. In recent years I’ve enjoyed reading a wide range of social sciences, which have reminded me how much I enjoyed my college psych, philosophy, and sociology courses. So I thought I’d share here some of my favorite donation-related book titles, in case you ..read more

If you’ve read any of my blog posts about financial assistance for living donors, you know that one of my pet peeves (boy, is that a euphemism!) is the practice of making aid for donors dependent on their recipient‘s income, as has been the policy through the federal National Living Donor Assistance Center (NLDAC). So I was delighted to see a bipartisan piece of legislation introduced in Congress last month that would shift the emphasis and could directly lead to more people becoming living organ donors. The Honor Our Living Donors (HOLD) Act (H.R. 6020) would help more donors qualify for reim ..read more

It’s been more than four years since I launched this kidney donation website. It’s expanded, the numbers of visits and hits have surpassed my wildest dreams—but it still looks the same. Someday I’d really like to give it a fresh look. I’ve learned a lot over the past few years and would love to make it more attractive and functional. But you know what, I feel the same way about our backyard, and, despite my best intentions, it still hasn’t happened. The website won’t take quite as much work—or, fortunately, money—but I know it’s not going to happen anytime soon. In the meantime, though, I thou ..read more

I am very pleased to share this space with a fellow living donor/donation advocate (BTW, her excellent book, Kidney to Share, belongs on your bookshelf right next to The Insider’s Guide to Living Kidney Donation). Beyond direct donation: what if your friends and family don’t match? September 28, 2023 By Martha Gershun, Guest Blogger  As a living kidney donor, I often hear from people who have recently been diagnosed with End Stage Renal Disease (ESRD) or have a relative who is a kidney patient.  These patients have usually been given little information about the advantages of living ..read more

Anyone who’s even casually perused this website or read many of my posts knows that I’m not brave and I’m not a risk taker–nor am I remotely athletic or even especially selfless. A lot of people think that living donors are many if not all of those things. One of the reasons I launched this website, in fact, was because I realized that my story of donating to my son is more relatable than most: we had no family history of chronic kidney disease and no risk factors. And surely there was nothing on my part that would have suggested a propensity for becoming a living donor. When I tell my story t ..read more