Every year in November, Rachel Bennett Steury gives a gift to someone else for her birthday.
Sometimes she donates blood or attends a charity auction – anything, she says, to give back.
In July, Bennett Steury, a healthy 30-something from Auburn, celebrated an earlier birthday by giving a kidney to a stranger in Pennsylvania.
After watching a CBS “Evening News” report about the National Kidney Registry, the largest online database of living organ donors in the country, Bennett Steury decided to become what the registry calls a good Samaritan donor – a person who donates a kidney to someone they don’t know.
The news report featured a donation chain in which a good Samaritan donor donated a kidney to a 25-year-old woman, whose brother donated his kidney to a 45-year-old man, whose wife donated her kidney to an 83-year-old man, and so forth, for a total of 20 people.
As of midweek, the registry’s website reported it was responsible for 536 transplants.
“I was the 501st transplant facilitated,” Bennett Steury says.
Enlisting her support
After watching the TV news segment around her birthday in 2008, Bennett Steury started to do some research, and she learned how hard it is to be on a waiting list for a kidney.
The Living Kidney Donors Network, a program similar to the National Kidney Registry, estimates that there are more than 80,000 people waiting for a kidney transplant. Many of those people wait more than five years to receive a kidney, often from someone who has died.
“If someone needs a kidney, the family and community will try to find one,” says Bennett Steury, 35. “Then (the patient will go on a) waiting list. That’s where they sit, and sometimes, that’s where they die.”
When Bennett Steury first shared her idea with her husband, Mathew Steury, he was nervous, he says. He worried about the procedure, but his wife explained the process enough that, going into the surgery, he was comfortable and supportive of her decision.
“I think she’s an amazing woman, but I thought that before the operation,” Steury says. “This just amplifies the feelings I have for my wife.”
Most family members mirrored Steury’s support, while others were more hesitant. “What if you need that kidney later in life?” is a question often asked of living donors.
When kidneys fail, Bennett Steury says, they tend to fail together. It’s uncommon for one to fail and one to remain viable, so if a donor has kidney failure later in life, that kidney donated years before wouldn’t have helped – it would have likely failed, too. In addition, those who donate kidneys and need one later in life are moved to the top of waiting lists, right below children, she says.
“All the research tells me it’s pretty safe,” she says. “And I’m healthy already.”
Before a donor is permitted to donate, the National Kidney Registry has a series of steps to follow, including undergoing a series of tests and finding a match, which is the hard part.
Ideally, doctors want a donor and recipient to match on six antigens, which is considered a perfect match. An antigen is a substance in the body that causes the immune system to produce antibodies to fight. When four or five antigens match, it is considered a good match, Bennett Steury says. The fewer the matched antigens, the greater the likelihood that a body will reject its new organ.
Bennett Steury did not pay for any part of her surgery. In the case of such donations, the recipient’s insurance or Medicare covers the cost. A lifetime on dialysis, Bennett Steury says, costs about $1 million, but a transplant is about $200,000.
She also didn’t have to pay for the stay in Chicago, where her surgery took place. Though she was released from the hospital on a Saturday, doctors wanted her to stick around until Wednesday so they could monitor her progress. The National Kidney Registry covered Bennett Steury and her husband’s hotel stay, food and pain medications.
Sometimes, however, the good Samaritan donor will turn down the registry’s aid, says Garet Hil, CEO of the National Kidney Registry. He’d like to see the recipient’s insurance cover all costs, including travel and hotel stays.
“We just think these are wonderful people,” he says. “If anybody’s ever questioning the world today and the goodness in the world, all they need to do is look to these good Samaritan donors. That’s evidence that there are amazing people in the world who are willing to do amazing things.”
More than three years have passed since Bennett Steury learned about the National Kidney Registry, and she had her surgery two months ago. Her experience with the donation process went well: Her kidney went to a patient in Pennsylvania, and the patient had a loved one who then donated to a man who had stayed down the hall from Bennett Steury.
The petite woman checked into her hospital suite at Loyola University Medical Center near Chicago – which has done surgeries on close to 20 good Samaritan donors, Hil says – on July 25. When she signed up for the registry, no Indiana hospitals were listed as participating medical centers; today, the Indiana University Health Transplant in Indianapolis is included on the list.
“Everything went great,” Bennett Steury says. “They said I lost less blood than you would give donating blood,” which is roughly 1 pint.
She felt groggy after the surgery, she says, and a little tender. Her belly was puffed up, but by 5 that evening, her kidney had already landed in Pennsylvania. The patient down the hall from Bennett Steury received his kidney in return the following day.
As of mid-September, the only remaining signs of the surgery are her scars and tape she says is still stuck to her leg from the catheter.
Cutting it close
Much has changed in kidney donation over the years. As Bennett Steury tells her story, her friend Tim Musser listens. Musser, of Waterloo, received a kidney and a pancreas transplant on March 19, 1999, before the National Kidney Registry existed.
For Musser’s surgery, doctors cut him from the backbone around to the belly button.
Bennett Steury, meanwhile, shows off four small incisions to the left of her belly button, where the doctors inserted cameras and tools for the laparoscopic surgery, and a larger, 3-inch mark a few inches below her belly button, where surgeons removed her kidney. Instead of using staples or stitches, doctors glued their incisions. Bennett Steury will have minimal, if any, scarring.
After his surgery, Musser was in the hospital for eight days and took three weeks off work. Bennett Steury, meanwhile, stayed in the hospital for three nights and took a week off work.
As a long-time friend of Bennett Steury and a kidney recipient, Musser has nothing but admiration in his voice when he speaks of his friend.
“It’s one thing to step up and donate to a friend or relative, versus if you step up and donate to a stranger,” he says.
Throughout the entire process – the tests, the waiting, the surgery – Bennett Steury has never regretted her decision.
“Something made me sign up, right?” she says. “There wasn’t anything that came up that made me not want to do it. So I was good.”