In February 2021, pandemic restrictions were just starting to ease in Hawaii, and Leila Mirhaydari was finally able to see her kidney doctor. This was a huge relief after being unable to get in-person health care for so long. But Leila was also anxious: Transplanted organs need diligent care, and Leila had been looking after her donated kidney all on her own for a year. So a lot was riding on that first batch of lab results.
“Immediately, all my levels were just out of whack and I knew that I was in rejection,” she says. “I’ve had to work through a lot of emotional pain, of feeling like I failed my donor. Like, why couldn’t I hold on to this kidney?”
Leila’s own kidneys had failed when she was just 27. She spent the rest of her 20s on nightly dialysis, a mechanized process where a machine does the kidney’s job, while waiting for her turn on a very long list of people in the U.S. whose lives depend on a transplant. She also began a long-shot search for a living donor, and was overjoyed when one stepped forward: Miles Landis, her step-cousin. On Sept. 9, 2014, Leila received her donated kidney.
“I’ve fondly named it The Hulk” Leila said a few months after her surgery. “And it’s funny because it’s in the front, so I feel it. And sometimes I just kind of hold it and say, ‘Thank you.'”
The Hulk had allowed Leila to be free of dialysis, to travel the world and live her life for eight “beautiful years.” Now, in a state of rejection, it seems their time together is ending. So Leila has begun preparing to go through the arduous journey again.
The immune system’s ‘snowball effect’
When a person receives a transplanted organ, the body’s natural response is to attack the foreign tissue. To prevent this “rejection,” a recipient must take medications to tamp down their immune system; otherwise, the foreign cells will trip the body’s alarm. Once that happens, it’s very hard to undo.
“We think about it as a snowball effect,” says Nicolae Leca, a professor at the University of Washington and medical director of UW Medicine’s kidney and pancreas transplant program.
“It’s always going to be potentially recognizable by the immune system. Our immunosuppression keeps that snowball from moving. But if the immunosuppression is too low, or someone doesn’t have access or has stopped taking their medications, that snowball starts to roll faster and becomes bigger. In other words, that will lead to a clinical rejection.”
The National Kidney Fund says kidneys from a living donor, on average, last 15-20 years. But Nicolae says it’s not unusual for an organ recipient to go into rejection much sooner.
The high cost of immunosuppressive meds
In March of 2020, like much of the world, Hawaii was bracing for the novel coronavirus. The restaurant where Leila worked had shut down, and she was out of a job.
“And, like millions of people in the U.S., our health insurance is tied to our employer,” she says. “I have to take my immunosuppressants every day, and I came up against some pretty big barriers to just afford my medications.”
As the months went on, Leila did her best to make it work. And then she made a tough call.
“I made the very big mistake of trying to elongate my medications because I couldn’t afford them,” she says. “It was extremely scary because I knew I was doing something that I probably shouldn’t be doing, but I didn’t have the finances.”
Leila suspects reducing one medication in particular, tacrolimus, by one pill per day is what allowed her immune system to strengthen and start attacking the kidney.
‘Back in the game’
Leila says she’s likely to go back on dialysis in the coming months, while she waits for a donor.
“I recently just was placed active on the UNOS list through the United Network for Organ Sharing, which is a very big leap and something that I was mentally having some blocks on moving forward with — feeling the guilt, the shame of rejecting and not knowing if I’m ready to get back in the game and do this all over again,” she says.
There are more than 100,000 Americans waiting for a life-saving organ transplant, according to UNOS – most of those for kidneys. About 17 people die each day in the United States waiting for a transplant.
As she awaits a deceased donor through the UNOS waiting list, Leila is also beginning to put out feelers for another living donor. In 2022, more than 6,400 living people donated an organ, also known as a “living organ donation”.
Meanwhile, the federal government passed a law in December 2020 that directs Medicare to cover the costs of immunosuppressive medications for the life of the transplanted organ. The change has been welcomed in the community of transplant recipients, but it was too late to help Leila.
“Anyone who’s in need of immunosuppressants will be able to receive them regardless of their insurance status,” Leila says. “It does bring me comfort knowing that, you know, whatever I’m going through, hopefully no one else will have to experience that.”
You can find more information about living organ donations from the United Network for Organ Sharing.