Two Chapel Hillians co-authored a book advocating for living kidney donations
By Renee Ambroso | Photography by John Michael Simpson
Carol Offen is a self-professed “wimp.” Flu shots and doctor’s offices once made her cringe, and she’s even fainted after a blood draw. Carol is vocal about her aversion to such things: “If a wimp like me could donate a kidney, you can, too,” she says.
Carol was 58 years old in 2006 when she donated to her son, Paul Offen, who was diagnosed with chronic kidney disease as a college student at N.C. State University. When Paul’s condition worsened and he needed a transplant, Carol called on a family friend and fellow Chapel Hillian Elizabeth Crais, a professor at UNC in the department of speech and hearing sciences, for support. Elizabeth’s first of two kidney transplants took place in 2004, about 10 years after a diagnosis of polycystic kidney disease. Her mother and sister had gone through the same illness. Elizabeth helped Paul cope with his lengthy stint of dialysis by sharing her own experiences while Carol’s family were evaluated as possible donors and they navigated insurance roadblocks.
Carol emerged as the only viable donor, but there were few resources available to help her grasp what donating would specifically entail – would she be deemed healthy enough to do so? Exactly how many needle sticks would be involved? It was the same for Elizabeth back in 2004, when she went to the library in search of practical advice on transplants and found thick medical textbooks and outdated diet plans. “I wish there were more resources out there for people going through this process either on the donor side or the recipient side,” she recalls thinking. It prompted Elizabeth to conceive of a book that would feature personal stories and advice on the ins and outs of organ donation, laid out plainly. She even went so far as to write an outline for it after her surgery, but the idea stalled while she recovered and got back to her full-time job and family.
Carol had come to the same conclusion during her donation. “In the back of my mind, as in the back of [Elizabeth’s], was that someday I’d like to write about this,” Carol explains. “We sure could have used a book that gave us practical advice and details and yet talked about personal issues with family that are just so multifaceted … nothing that we found addressed any of these things.” But, Carol says, “I was very intimidated by the subject; it’s very heavy [and] very serious.”
She started with an op-ed in The News & Observer in 2014 about the modern process of living kidney donation, and the idea of writing a book resurfaced. Carol called up Elizabeth, and both women agreed that they wanted to see the endeavor through. The text was to be not only a recounting of their experiences, but also a no-fuss guide written in laypersons’ terms, paired with personal testimonies from a diverse group of people.
“The Insider’s Guide to Living Kidney Donation: Everything to Know if You Give (or Get) the Greatest Gift” was released in September 2021, nearly seven years from the start of the project.
Today, there’s a wealth of websites and blog posts about living organ donation. Elizabeth describes it as “a fire hose when you’re trying to take a drink of water.” The pair reevaluated the text before publishing to ensure it would remain manageable for readers who were faced with wading through mountains of facts and details before a transplant. “We want the book to be able to funnel all the information,” Elizabeth explains, so that it offers up current, quality resources alongside anecdotal evidence. One section of the book is devoted to answering the most pressing FAQs. Another chapter lays out the extensive pre-donation medical testing process in detail. “I would have loved to have known exactly what [the testing] was going to consist of,” Carol explains. The authors also set out to debunk widely accepted myths, like the idea that kidney disease only affects older adults, and illustrate the impact on someone like Carol’s son, a young person who didn’t have risk factors like a family history of kidney disease.
Elizabeth eventually needed a second transplant, which took place in May 2021. This time around, she followed her own advice from a chapter of the book in which she noted lessons learned from her first transplant, and she took extra steps to prepare family members for the emotional toll before undergoing the lengthy process.
Carol advocates for donors and recipients through the National Kidney Foundation, the Triad chapter of a Cary-based group called Donate Life NC WELD (Women Encouraging Living Donation), and she also maintains a blog and website called kidneydonorhelp.com where she shares stories, answers common questions and connects with other living donors. She and Elizabeth continue to promote their book and share their knowledge wherever they can, like on podcasts – including an episode of the popular science-based “This Podcast Will Kill You,” and the “Donor Diaries” podcast – and during an ABC 11 news feature.
Carol and Elizabeth have been publicly vocal about their experiences since their donation and transplants, respectively, but hope the book will garner awareness on a larger scale and encourage others to consider giving the “greatest gift.”
“Transplant and donation are so much more than a medical experience,” Elizabeth says. “It’s emotional, it’s financial, it’s psychological. … [The book’s] practical parts as well as the personal stories, we really hope that these will resonate with people.”
Signed copies of “The Insider’s Guide to Living Kidney Donation” are available at Flyleaf Books, and copies can be ordered through all major retailers.