Family ties

By Michaela Gibson Morris/NEMS Daily Journal

For sisters Sunni Sanders Stupka of Baldwyn and Paulette Sanders Behan of West Chicago, Ill., the most important gift wasn’t under the tree in their parents’ Tupelo home.
It was a new kidney restoring Paulette’s good health, and one kidney working well for Sunni.
“This is the greatest gift at Christmas,” said their mom Shirleen Sanders.
Sunni, who is a stylist at Hair Tailors in Tupelo, and Paulette are links in a special chain of survival.
Sunni, 42, was able to help her sister Paulette receive a kidney through a paired donation chain that links kidney patients who have a willing donor, but don’t have a match. In September, Paulette, 45, received a kidney from a woman in Philadelphia. Five days later, Sunni’s donated kidney went to a man in California.
“There are 30 donors and 30 recipients in our chain,” Sunni said. “It’s the largest living donor chain so far.”
This is the second time the Sanders clan has celebrated a new kidney for Paulette. Her first kidney, which came from her husband Richard Behan, lasted longer than the average 15-year life span for a donated kidney.
“It would have been 21 years Dec. 27,” Paulette remembered sitting at the kitchen table of her parents’ Tupelo home, smiling across at her husband.
Essential organ
Kidneys are essential, but delicate organs. They filter the body’s trash from the blood. When they don’t work, it sets off a chain reaction.
“If the kidneys shut down, the heart shuts down,” Richard said.
However, people who are healthy can live well with just one kidney, and kidneys from living donors often last longer than kidneys from cadaver donors.
The Alliance for Paired Donation, a nonprofit organization founded in 2000, works with 52 kidney transplant centers around the country – including the University of Mississippi and Loyola Medical Center in Maywood, Ill., where Paulette and Sunni went through surgery.
The National Kidney Registry helps connect willing donors with the compatible patients. Most are like Sunni and Paulette, but there are Good Samaritans who are offering to donate a kidney out of a desire to help a stranger in need.
“There are thousands in the database,” Paulette said.
The alliance cites estimates that paired donation will one day allow for an additional 3,000 living donor renal transplants per year in America by greatly increasing the number of living kidney donors.
A New England Journal of Medicine editorial supported paired donation as a way to expand the number of available kidneys for all kidney patients.
Transplant journey
Paulette’s journey started 23 years ago. When she was 22 and living in Dallas, she started getting nauseated. After a series of doctor’s visits, she was diagnosed with glomerulonephritis, a disease that attacks the part of the kidney that filters blood. It can be a complication from a bad case of strep throat. It can be caused by trauma. But in most cases, they just don’t know what causes the disease, Paulette said.
“I called my parents and said, ‘I’m OK, I’m going to be OK, but I’m going to need a kidney transplant,’” Paulette said.
Parents Jake and Shirleen Sanders where ruled out because of health issues. Brother Don Sanders was willing, but as an Air Force officer, he wasn’t permitted to donate.
Sunni, who was 19 at the time, was a match, but doctors ruled her out because of her age.
“I was devastated,” Sunni remembers.
Thankfully, Richard Behan stepped up as a donor after Paulette’s family was ruled out. Paulette had just met Richard a few months before she was diagnosed. A Chicago-based certified public accountant, he had hired Paulette as part of a team of local CPAs to run an audit in Dallas. They became fast friends, and he was a steady source of support.
“I needed someone to talk to who wouldn’t fall apart,” Paulette said.
And because Richard worked with a number of physicians, he had a network of information to pull from in the days before the Internet. Early in the process, Richard told her he wanted to be tested as a possible donor if her family members weren’t eligible donors.
“My father had only one kidney; he was born that way,” Richard said. “So, there was no fear factor.”
The first transplant went well, and Paulette and Richard, who had fallen in love along the way, married a year later. Like all kidney transplant patients, Paulette took anti-rejection medication and was followed closely.
Thankfully, the disease that took Paulette’s first kidney didn’t attack the new one. But donor kidneys don’t last forever. About five years ago, the kidney started showing signs of failing.
Nausea, migraines, anemia and rising blood pressure slowly took their toll. As her kidneys failed, Paulette became weaker and weaker. But patients have to wait until they are ruled in end-stage renal disease before they can begin the transplant process.
“Every day things got really hard to do,” said Paulette, who remembers she couldn’t walk to the mailbox.
Sunni, now married to Paul Stupka with whom she has two sons, Abram, 10, and Shepherd, 8, was ready and waiting to donate as soon as the doctors gave the green light.
But the testing showed that Paulette’s immune system had been sensitized by the first transplant, and Sunni was no longer a match.
“We assumed all this time I was a sure thing,” Sunni said. “You wait all this time to do it again,” Sunni said. When they told her she wasn’t a match, “I started squalling.”
Brother Don was ruled out because of slightly elevated blood pressure. In all, 10 Sanders and Behan family members were tested without any match for Paulette.
Then the staff at Loyola asked Sunni if she would consider donating her kidney to a stranger so that another kidney would come to Paulette through the paired kidney donation.
Sunni said she was amazed by the program.
“It could be more than just giving to her,” Sunni said. “It could help out lots of people.”
Instead of a swap, the donor “pays it forward” sending a kidney down the line to help someone else. It increases the chances of finding the best possible match. Usually a Good Samaritan, who isn’t donating to help a particular patient, starts or closes the chain, Paulette said.
Paulette received her kidney on Sept. 23. Sunni’s surgery was five days later.
The program is completely voluntary; it would have been possible for Sunni to back out after Paulette received her kidney.
“If Paulette’s kidney worked or didn’t work, I was prepared to go ahead,” Sunni said.
But Paulette’s kidney worked beautifully, and Sunni came through with no problems.
When Richard donated 21 years ago, they had to make a large incision and take out a rib to remove the kidney.
Sunni’s kidney was removed using minimally invasive surgery techniques and a small incision. She was back at work at Hair Tailors in 10 days.
“I just have four holes and a tiny cut,” Sunni said.
Paulette has regained her old vigor. Richard surprised her with a 20th wedding anniversary trip to San Antonio.
“That wouldn’t have been possible,” before the transplant, she said.
Even with advances in anti-rejection medication, the rest of the family knows Paulette will likely need another kidney.
“I’m just keeping it warm for her,” said brother Don.
But he’s not the only one.
“Abram’s planning on being the next one to give to her,” Sunni said of her 10-year-old son. “He considers Paulette his second mom.”
Sunni says she would do it all again for Paulette, just like the merchant in the Biblical parable who sells all he has for one perfect pearl.
“She is my pearl of great price,” she said.
michaela.morris@journalinc.com

Learn More
• National Alliance for Paired Donation
www.paireddonation.org

• National Kidney Foundation
www.kidney.org