She never anticipated donating a kidney – now she works to help others do the same

Carol Offen (L) and UNC Professor Emerita Elizabeth Crais (R) posing with their book The Insider’s Guide to Living Kidney Donation. Photo provided by Carol Offen.

COMMUNITY NEWS

By Fraser Sherman
Correspondent

Donating one of her kidneys to her son Paul two decades ago wasn’t as nightmarish as she’d feared, Chapel Hill resident Carol Offen says. “Two tiny slits, then a bikini incision where they pulled the kidney out,” she told The Local Reporter. “To this day, I think of this as the most ennobling thing I’ve ever done.”

Since giving up her kidney, Offen has co-written a book about the challenges facing donors and kidney recipients. As an American Kidney Fund (AKF) ambassador, she’s also lobbied for laws and policies to make donating easier. According to an AKF press release, North Carolina had 3,700 state residents on the kidney transplant waiting list in 2023 but only 144 living organ donations. Offen said changes to state and federal laws could improve those statistics.

Carol Offen, Kidney Donor

Offen says Paul was a student at NC State when he received a nephritis diagnosis that “came totally out of left field. We didn’t have a family history of kidney disease; he had no risk factors.” It turned out an earlier strep infection had caused the kidney disease, something Offen hadn’t known was possible.

The doctors, she said, were confident the disease would progress slowly. However, in 2004, a couple of months after Paul graduated, routine lab work showed his kidneys were suddenly failing. “They redid the tests – that’s how stunned they were by the results,” Offen said. “To this day, we don’t know why.”

Next came dialysis to keep her son alive until they could find a kidney donor.  Offen said she, her husband, and her daughter were willing to donate. Her daughter, at 15, was too young; her husband had previously had a kidney stone, which knocked him out of the running. Other relatives weren’t compatible with her son’s Type O blood. That left Offen. She said she was ready and willing, even though she faints at flu shots and blood tests.

Instead of an immediate transplant, it took two years of waiting and dialysis. The standard policy is that the recipient’s insurance pays for both the transplant and donation. Paul, however, lost his college insurance when he graduated, Offen said and hadn’t worked enough to qualify for Medicare. By 2006, he’d put in enough part-time work to qualify, and the transplant could proceed.

Offen’s experience led to her writing The Insider’s Guide to Living Kidney Donation with UNC Professor Elizabeth Crais “to offer people something non-technical and practical and personal.” Offen also began working with AKF and other groups to improve the legal, non-technical side of the living donation process.

“Kidney patients are dying needlessly,” Offen said. “There’s not enough kidneys to go around.” She said drawing on her personal experience makes her pitch to legislators and staffers more persuasive: “When it’s somebody’s story, you just get it a lot sooner.”

North Carolina Gets a D Grade

Offen and the AKF say the physical, surgical aspect of donating kidneys is no longer the prime obstacle to live donations. Donors and recipients must be compatible – right size organs, right blood type, suitable antibodies – but paired exchange programs can work around that. Suppose your spouse needs a kidney, and yours isn’t compatible. Through an exchange program, you can donate your kidney to a compatible recipient in return for someone close to them donating a compatible kidney to your spouse. Everyone wins.

However, the AKF says that doesn’t solve other problems, such as taking time off from work for the surgery and post-op recovery. Can the donor afford to take unpaid leave? Will their employer grant them the time off?

Another factor is that kidney donation can lead to problems if you apply for life, disability, or long-term care insurance later. Insurers may jack up premiums because they consider you a high-risk applicant, Offen said, even though her own experience shows otherwise. “My donation was 17 years ago, but I’m 75. I’m healthy and active.”

AKF lists seven legal protections it thinks would help increase kidney donations. North Carolina has only one of the seven, job-protected leave for government employees, earning it a D on the Fund’s 50-state report card.

Offen said if the laws change, the number of donations should increase. She said that donating is life-changing for the recipient, but she knows from personal experience how moving it is for donors. “To think that you can do something that has that kind of an impact,” Offen said. “Even if it had been a stranger, that feeling is unbeatable.”


Fraser Sherman has worked for newspapers, including the Destin Log, the Pensacola News-Journal and the Raleigh Public Record. Born in England, he’d still live in Florida if he hadn’t met the perfect woman and moved to Durham to marry her. He’s the author of several film reference books and has published one novel and several short story collections.

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