Christine Hernandez strikes up conversations with almost anyone she meets, making sure to hand out a business card with a QR code leading to information about how they could donate a kidney to her.
Other times, she has shared her story on billboards visible from Chicago highways. Her family has worn T-shirts to get the word out and she’s also opened up to thousands of people through social media. Her husband even had a graphic emblazoned on the side of his car to find a donor.
Despite her best efforts for years, Hernandez remains without a kidney donor.
“Sometimes you need a break,” says Hernandez, 50, of suburban River Grove. “I just want to think about enjoying my family, because I’m constantly on it, looking and I feel like my life is just passing me by, and all I’m doing is searching constantly for a kidney.”
Across the country, more than 93,000 people — including Hernandez — are awaiting a kidney donor, according to data from the Organ Procurement and Transplantation Network. In Illinois, there’s an estimated 3,753 people waiting for a kidney donor. That can often mean dealing with the health effects of kidney disease — which could include debilitating dialysis — while also becoming a fierce advocate for yourself as you look for someone willing to give their kidney to a stranger.
The practice is so common that the National Kidney Foundation of Illinois created a program that coaches people on how to promote their case through social media or even in more visible ways like a billboard, says Monica Fox, the vice president of government relations and external affairs for the foundation. They also stress the importance of putting potential donors at ease about the transplant process.
“There’s a lot of fear around it,” Fox says about organ donation. “When you think about a person who’s healthy and there’s nothing wrong with them, and they’re going to go have surgery just to help someone else out.”
‘Compared to having a baby, it was nothing’
When Alison Toback heard her childhood friend needed a kidney transplant, she got tested to see if she was a match. The Evanston resident decided to donate one of her kidneys even after finding out she wasn’t a match, undergoing the procedure last December in Chicago. The donation allowed her friend, who lives in the Seattle area, to be bumped up on the waiting list.
Toback saw it as an opportunity to pay tribute to her late father, who worked as a nephrologist.
“I can’t donate enough money to really make a huge difference so when this opportunity came up, it just seemed like a way to honor my friend and also help a stranger and honor my father,” she says.
Getting a kidney transplant through a living donor raises the survival rate. For example, a person who receives a kidney transplant from someone who has died has a five-year survival rate of about 82%. While that five-year survival rate goes up to 92% if the organ is from a living donor, said Dr. Enrico Benedetti, a transplant surgeon at UI Health who is also Hernandez’s doctor.
But being a living donor comes with some costs. Toback, who is self-employed as a licensed clinical professional counselor, does not have paid sick time. The National Kidney Registry stepped in to cover some of her lost wages, which allowed her to take four weeks off to recover from the surgery.
It’s one reason she has pushed for the passage of a congressional bill that would create a pilot to provide refundable tax credits to kidney donors.
Toback has bounced back from the surgery and has resumed swimming and running. She hasn’t experienced any complications and the surgery left her with a minimal scar similar to one from a cesarean birth.
“It was really just not a lot of pain; it was a little uncomfortable getting in and out of bed,” says the mother of two children. “But other than that, compared to having a baby, it was nothing.”
More hurdles for Hernandez
When Hernandez was diagnosed with kidney failure in 2016 she had no symptoms. A nurse at the time, she had pushed doctors to test her after two of her brothers were diagnosed with kidney failure.
The tests revealed she had already lost about 60% of kidney function and she had a rare form of kidney disease known as MUC1. Her health declined to the point that she was later no longer able to work as a nurse.
In 2018, she started looking for a donor, but she was also diagnosed with breast cancer, and underwent a double mastectomy, before continuing her quest for a donor.
Further complicating Hernandez’s case is the fact that she has extremely high antibodies levels. These remove bacteria or toxins from the body but they also create a higher risk for her body to reject a kidney transplant, says Dr. Benedetti, who has been treating her. Higher levels of antibodies can be found in women like Hernandez, in particular, who’ve experienced multiple pregnancies or had a blood transfusion or a previous transplant.
Benedetti said he is looking to a medication known as Imlifidase that can break down the antibodies. It has already gained approval in the European Union and he is hoping it will make its way to the United States.
“She understands that it is still risky and a new and complex procedure, but at least she would have a chance,” he said.
Imlifidase is made by Sweden-based Hansa Biopharma, which just completed a trial in the United States that involved 64 patients, said Renée Aguiar Lucander, the company’s CEO. The trial showed that people were able to accept an organ, she said.
They are on track to file an application with the U.S. Food and Drug Administration by the end of the year. The company is requesting priority review, which would allow the FDA to review their application in eight months versus the typical 12-month review process, Aguiar Lucander said.
‘Fighting for my life’
While the company makes progress to bring the medication to the U.S., Hernandez awaits, undergoing dialysis three times a week for four hours each time to remove waste and extra fluid because her kidneys can no longer perform that vital function.
The five-year survival rate for someone on dialysis is about 40%, Benedetti said. And Hernandez is declining.
“Dialysis takes a big toll on patients,” Benedetti said, noting how it causes them to lose muscles. “Renal failure is a really negative factor for the strength and for the health of the muscle, including unfortunately, the heart, that is the most important muscle in our body.”
Hernandez says she feels herself growing weaker, fatigued and she is also dealing with swelling.
From across the country, Donna Tissot, of New Jersey, tries to encourage Hernandez to continue her search for a donor.
Though they have never met in person, Tissot serves as Hernandez’s advocate by looking for a donor through social media, pitching her story to media, TV stations, writing to Chicago-area churches, baseball teams and businesses.
“I know there’s somebody out there, and I’ll do whatever it takes to get her somebody to come forward,” Tissot said. “I know when she’s down. I can always tell when she’s down, and I write her and I say, ‘Listen, we’re in this together. We can’t give up now.’”
Hernandez continues sharing her story online with her more than 8,000 TikTok followers. She was recently awarded the National Social Media Education and Advocacy Award by the American Association of Kidney Patients.
“I’m fighting for my life,” Hernandez says. “But I need somebody to help me fight.”