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The Philadelphia Inquirer
The Philadelphia Inquirer
Lifestyle
Sarah Gantz

Want to donate a kidney or liver? This new Center for Living Donation aims to increase live donors for patients in need

PHILADELPHIA — Penn Medicine has opened a Center for Living Donation, bringing under one roof its services for patients who receive kidney, liver, and uterus transplants with organs donated by living people.

By pooling the resources of these programs, Penn leaders hope to increase the number of live transplants, expedite care for people waiting for organs from deceased donors, and address racial disparities among those who benefit from organ transplants.

An organ transplant is often the only treatment option for people with severe liver and kidney disease. But demand for new organs far outstrips supply, which means patients often spend years on a waitlist, while their health continues to decline. Some die before reaching the top of the list.

A majority of transplants involve organs donated by the families of those who have recently died, such as from sudden accidents like car crashes, but whose organs are still healthy. Yet many people can safely donate organs while they are alive. For example, people need only one of two kidneys to live. Since the liver can regrow, doctors are able to remove a portion for transplantation.

Penn's new center aims to increase donations from living donors as a way to get more patients help sooner.

"Any amount of time they can shave off the wait is a health benefit," said Therese Bittermann, the medical director of Penn's living donor program for liver transplant.

Live donor transplants account for about 30% of kidney transplants and just 5% of liver transplants, according to the Mayo Clinic. Most live donors give to a family member or close friend, though anonymous donations do happen, Bittermann said.

Deceased organ donations are managed by hospitals and national organ donation programs, such as Gift of Life. Patients have little control over their place on the waitlist or when an organ may become available.

Meanwhile, live organ donations are often a product of patients' hustle and social networking skills. Patients who want to consider a live donation may talk to friends and family about getting tested to see if they're a match. Families have set up social media campaigns, GoFundMe drives, and printed bumper stickers to cast a wider net.

Those with more financial resources may be able to take their campaign to the next level. For example, a Bucks County man recently bought dozens of billboards and transit station advertisements urging a kidney donor to come forward.

Janhavi Raine donated a kidney to a good friend in fall 2021. Raine, a 49-year-old dentist from Plainsboro, N.J., said she spent two days in the hospital and was back in the gym four weeks later.

The procedure left her with a single, three-inch scar where her abdomen meets her groin.

Since then, people who've heard about Raine's donation have made a much bigger deal of it than she thinks is necessary — praising her for a godly act and putting her on a pedestal.

"It's not as traumatic as people expect," she said.

The new Center for Living Donation will focus on public health education to dispel myths and help patients advocate for themselves.

Organ donation procedures are considered major surgery, and recovery time varies, depending on the organ. But people who are generally healthy with no underlying health conditions should be able to resume their normal daily routines after weeks to months of recovery, Bittermann said.

"It's a hard conversation to have, to ask your friends and family to be a donor," she said.

Another major charge of the new center is to expand access to live donations, especially for people who have historically been underserved.

Revised eligibility and wait list rules dramatically reduced racial disparities in deceased donor organ transplants several years ago, but Black patients still receive far fewer live donor organ transplants compared to white patients, research has found.

Improving the donor experience — for instance, streamlining tests and providing more recovery assistance — could make it easier for people to donate.

So, too, could expanding to patients who need liver transplants an organ exchange program that Penn has used among kidney patients. Patients with a willing donor, but who isn't a match, can be paired with another patient and donor who are matches. Patient A's donor gives to Patient B, and vice versa.

To be a match, donors and recipients must have compatible blood types and tissue types.

The new center will also grow Penn's emerging uterus transplant program, which performed its first live transplant in 2020. Uterus transplants are relatively new but enable people born without a fully formed uterus to carry and deliver babies.

For her part, Raine plans to raise awareness about live organ donation on an international stage next month, at the Mrs. Universe pageant in Bulgaria.

Raine, who is representing the eastern part of the United States, decided to enter her first pageant after donating a kidney in part because she wanted a platform to encourage others to consider organ donation.

She plans to tell the audience that donating a kidney didn't change anything about her daily life or health — but it made a huge difference "for someone whose life depended on this one organ."

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