Helping Hands for Those Who Give the Gift of Life

By Daphne Sashin

How Penn Medicine’s New Center for Living Donation Is Helping More People Give and Receive Lifesaving Organ Transplants 

Nancy Rowe isn’t sure what it was about turning 47 that put her on the path to donate one of her organs while she was still alive. But she woke up on Sept. 20, 2017, with the distinct feeling that she would not be having children, and wanted to give life another way. After some research, Rowe, an ultramarathon runner who had been healthy her whole life, decided she could spare a kidney. The following August, following months of testing by the team at the Penn Transplant Institute (PTI) to make sure she was suitable to donate – medically, psychologically, financially, and otherwise – Rowe underwent surgery at the Hospital of the University of Pennsylvania (HUP) to part with her right kidney.

Hers was a “non-directed” donation, in that she used the National Kidney Registry (NKR) – which facilitates living kidney donation – to match her kidney with one of the tens of thousands of people in need of a transplant. Hours after her surgery, it was doing its job for a 30-year-old California woman Rowe had never met. And apart from one rough week post-surgery, Rowe, who now works as a surgical technologist regionally and on-demand at Penn Presbyterian Medical Center (PPMC), says having one kidney has not negatively affected her life at all.

“It wasn’t that hard. It’s very doable,” Rowe said. “If more people knew how easy it was – relatively – I think more people would do it.”

Transplant leaders at Penn Medicine agree. Earlier this year, they announced the creation of the Penn Center for Living Donation to centralize and expand the resources of Penn’s kidney, liver, and uterine living donor programs, with the goal of supporting and encouraging more people to give the gift of life while they’re alive and healthy. 

A Crucial Alternative

The need is dire, especially for kidneys. Currently in the United States, most kidney transplants involve deceased donor organs, but there aren’t nearly enough. Last year, about 20,000 transplants were performed with deceased donor kidneys, and about 6,000 with living donor kidneys, according to the Organ Procurement & Transplantation Network. Yet more than 90,000 people are registered on the national waitlist for kidneys. In the Philadelphia region, the gap between people in need and available deceased donor kidneys means patients can wait up to 10 years.

It’s a crisis that can be solved, said Ashley Aloba, MSN, RN, one of the Penn Center’s four living donor kidney transplant coordinators. She serves as a clinical liaison for potential and actual living donors, reviewing their medical histories and coordinating the referral, evaluation, and post-donation phases.

“We are a very solution-oriented team. There are not enough deceased donor kidneys for all these people who need a kidney, and what are we doing to fix that problem? We are what we’re doing to fix that problem, and it’s really cool,” Aloba said.

Those lucky enough to receive a kidney from a living person also have better results. Since patients most often find a suitable donor on their own, they spend much less time waiting for a transplant, avoiding further deterioration of their health. They tend to have fewer complications after surgery, and the organs they receive last up to twice as long as organs from deceased donors.

Out in the community, the Penn Center is working to build awareness about the safety and impact of living-donor transplants through community events, informational sessions, partnerships with local organizations, and marketing campaigns. A key priority is reducing racial disparities in living organ transplantation; while people of color make up a little less than half the people waiting for a kidney transplant in Philadelphia, very few receive a living donor’s kidney.

To that end, PTI Transplant Outreach Coordinator Melissa Coleman, a Penn kidney transplant recipient herself, has been working closely with social workers at local dialysis centers to provide resources for Penn patients. These include free, personalized websites, or “microsites,” that they can use to find a living donor. Penn has partnered with the NKR to create these microsites and even has a dedicated NKR coach who can help patients write their stories. “We want to make sure that everybody has an equal opportunity to tell their story to find a donor,” said Coleman. 

Focus On the Donor

Once donors step forward, the Penn team is focused on making their experience as efficient, positive, and convenient as possible. They’re aware that donors are a unique patient population, typically active people with busy lives. A lot of the initial appointments can be done virtually, and the on-site evaluations are blocked together to minimize the need for travel and time off from work.

“The donors are concerned about their recipients, but I tell them, ‘I’m here for you. I am your provider, and while our goal is to save lives and get people transplanted, the most important thing to me is donor safety and donor-centric care,’” said Mary Cate Wilhelm, PA-C, a physician assistant on the living donor kidney team. “They’re taking on a surgery they don’t need to have, that does not physically benefit them, for the betterment of someone else. So we really need to cater to their needs and wishes.”

Wilhelm and her colleagues make sure donors know they can plan their operations for a timeframe that works best for them. Thanks to innovative voucher and paired-donation programs by the National Kidney Registry, donors can give on their own timetable, without regard to the recipient, and still benefit a friend, loved one, or acquaintance in need. Penn donors who don’t have an identified recipient but want to donate a kidney to a stranger, can receive vouchers for immediate family members that can be activated for a living donor kidney if one of them ever needs a transplant. And living kidney donors who donate via the NKR are prioritized for a living donor kidney transplant should they develop kidney failure later in life.

Donors are assured they can back out right up to the moment of anesthesia, no questions asked, and will be provided with a medical alibi to give their intended recipient, Wilhelm said. And by way of the National Kidney Donation Organization’s Donor Connect program, every prospective donor can talk to an independent mentor who also donated a kidney at Penn.

Colleen Gielda Smith, a Penn kidney donor herself, was excited to join the team as the Penn Center’s new living donor patient navigator. She does everything she can from a non-clinical standpoint to minimize stress for potential donors, from letting them know where to get their parking validated, to connecting them with the Clyde F. Barker Penn Transplant House for housing reservations if they’re coming from out of town, to physically walking them to their various tests and appointments on the day of their on-site evaluation.

By the time prospective donors get to their evaluation day, they are typically invested in donating – even if, like Rowe, they don’t know their recipient. But just 25 percent of those who start the evaluation process for kidney and liver donations are approved.

Individuals interested in living donation undergo a comprehensive medical assessment. Potential donors may be considered high risk for several reasons, including medical conditions such as obesity, diabetes, or hypertension; incompletely treated mental health conditions; or financial limitations, according to Amanda Leonberg-Yoo, MD, medical director of the kidney living donor program. “Our job is to assess individual risk and make sure organ donation is the right choice for that person. Protecting their safety, health, and well-being is the primary goal of the evaluation process.”

Smith knows the anxiety that donors feel that day, worrying they might not make the cut. “If a test doesn’t look good, if something doesn’t go right, then they could be eliminated as a potential donor,” Smith said. “’I always ask the donors, as we’re walking from one appointment to the next, ‘How are you holding up?’”

Depending on how they respond, Smith often tells them she was once in their shoes. Seven years ago, she donated her left kidney to her husband at HUP.

“One of the things I feel I can do to help is to let them see a living donor who is, I always say, hopefully looking healthy that day,” Smith said.

Making It Happen

While there are some non-directed, anonymous living donors like Rowe, most recipients of living organ transplants must find their own donors. Thus, social media is a powerful tool in living organ donation, the PTI staff say.

About a year ago, Alvin Fisher of Dover, Delaware, decided it was time to start looking for a kidney donor. Diagnosed with kidney disease in 2012, the busy retiree had no intention of letting his disease progress to the point where he had to go on dialysis while waiting for a transplant. Fisher created his own website to not only find his own donor, but also spread awareness about kidney disease and living organ donation. The day after he posted the link on Facebook, he got a message from Alyssa Middleton-Hall, who lived in the same town and had seen his story shared on a local Facebook page. Not long before, she had started the testing process to donate on behalf of a friend in need, but was told by another medical center that she wasn’t a suitable candidate for kidney donation.

“I cried that I had been turned down,” said Middleton-Hall, 48. “I thought, ‘I have to give my kidney to someone.’ My mind was like, ‘I have to do this now.’”

Penn’s team did their own evaluation and determined that Middleton-Hall not only could donate, but that she was a suitable match with Fisher, 65. They had their surgeries at HUP on Sept. 1, 2022, and both are doing well.

“I am so grateful for Penn. The team was so thorough, I felt well-informed, and the people on the floor after the surgery were phenomenal,” Middleton-Hall said. “I just feel we should do what we can, if we can do it, to save someone’s life or make it longer.” 

Small – and Large – Acts of Kindness

The morning of Rowe’s operation, surgeon Ali Naji, MD, PhD, thanked her for her donation and asked if she was sure she wanted to proceed. Then he held her hand until the anesthesia kicked in, “a small act of kindness that I will never forget,” she recounted in an essay for the PTI website.

Nearly five years later, Rowe keeps a photo of her former kidney on her desk as a reminder of the gift she made.

“I am still shocked how it could come out of my body in the morning, get on a flight, and, after I had it for 48 years, it was now in another body doing its job,” said Rowe. “It was the greatest thing I ever did.”

Ready to see if you’re qualified to become a living organ donor? Visit PennMedicine.org/LivingDonor