Hundreds of living organ donors gathered Saturday at Millennium Park in hopes of setting a world record and, in the process, inspiring others to consider becoming living organ donors.
Among them was Kendra Perpich, who in 2015 helped save the life of a Lombard teenager by donating a portion of her liver for transplant after learning on Facebook about the boy’s plight.
But Perpich had a very different agenda than most of Saturday’s participants.
Her goal was to raise awareness of the potential downside of organ donation for living donors, which in her case has included ongoing medical complications she never expected.
In short, Perpich has regrets about being an organ donor despite the excellent medical outcome to date for the boy who received the transplant.
“No, I wouldn’t do it again,” Perpich told me Friday, albeit reluctantly and only when pressed.
Perpich, 49, of Phoenix, Ariz., said she still suffers near-constant nausea and pain that have prevented her from returning to work as a flight attendant. She soon will need a third hernia operation related to the transplant surgery. And she doesn’t believe she was properly informed in advance of the risks.
Perpich knows that’s not a particularly popular message in the organ donation world, especially during April, National Donate Life Month.
The United States continues to have vastly more people waiting for kidney and liver transplants than there are organs available for them from deceased donors. Healthy individuals serving as living donors are seen as an important way to close the gap.
The Millennium Park event, which aimed to set a Guinness World Record for bringing the most living organ donors together in one place (they were hoping for 250), was a way to promote organ donation with people offering testimonials about their positive experiences.
But dissatisfied donors such as Perpich, who have connected through the Facebook group Living Donors with Complications, say they should be heard, too, even if the statistics place them in a small minority.
I certainly don’t want to discourage organ donation, which I have always supported personally and professionally.
Still, I also feel a responsibility to share Perpich’s story, having participated in the original upbeat coverage of her selfless act.
Perpich believes the statistics understate the actual incidence of complications because living donors, who are often relatives of the transplant recipient, don’t want to complain.
“The ones that have had complications are afraid to actually tell people about the complications because nobody wants to hear that there’s a bad side of donation,” Perpich said. “Everyone wants to think it’s a miracle cure or to save someone.”
She participated in one of those miracles.
It was Dec. 20, 2015, when doctors at Northwestern Memorial Hospital and Lurie Children’s Hospital held a news conference to introduce Perpich and Anthony Parello, who was then a pale and undersized 14-year-old suffering from biliary atresia, a rare liver condition that afflicts infants.
Perpich explained she had agreed to donate her liver to Anthony after answering a Facebook plea from his mother, Kimberly Parello. Perpich thought she had met the mom as a young adult while living in Chicago. Parello had turned to Facebook after Anthony developed a tumor.
Now, more than two years later, Anthony “is doing great,” his mother said.
She said her son’s growth has “pretty much caught up” to kids in his age group, and he recently got his driver’s license.
“He’s a normal teenage boy,” she said joyfully.
Parello said she was sorry to hear of Perpich’s ongoing health issues.
“I feel like I owe her so much for what she did,” Parello said.
Perpich remains proud of helping save Anthony’s life. It’s one of the reasons she is attending the Millennium Park event.
But it’s complicated by the unexpected decrease in her own quality of life.
“Nobody ever told me it would be a lifetime complication,” Perpich said of the nausea that causes her to throw up multiple times a day despite her medication.
She criticizes doctors at Northwestern for not giving her proper support. She’s particularly upset they advised her at one point to see a hypnotist for her problems.
A Northwestern spokesperson said the hospital could not comment.
Perpich she has no desire to stop living organ donations but only wants to make donor candidates more aware of the risks. She also said she has no intention of filing a lawsuit.
“I’m going public because I would like the process to change,” she said.
Back in 2015, reporters asked Perpich why she agreed to donate her liver to Parello.
“People ask, ‘Why would you?’ My question is, Why wouldn’t you?” Perpich said then.
Today, she could answer her own question.