Young Man Becomes First in World to Be Cured of FSGS With New Treatment

Combined stem cell transplant and kidney transplant prove a winning combination against autoimmune FSGS

Imagine spending a good share of your childhood hooked up to a machine. While your friends are traveling on a bus to a school game or hanging out at the mall, you are at home or at a dialysis center tethered by cords, every day for at least three hours. A lot of kids would give up trying to keep up with life. Not 21-year-old Traejen Kingston. 

“Dialysis for kidney failure was a killer, but I refused to give up school, choir, or tennis, even though I was always very tired. I functioned at half the energy of a healthy person,” says Traejen.  

Not only did Traejen play tennis; he played it well. He became captain of his high school tennis team and won tournaments. During high school, he had college coaches offering him a place on their teams. On top of that, he was a good student and graduated with high marks. He enjoyed singing in his high school choir and was even able to travel to New York, thanks to his amazing choir teacher, Ron Curtis.

FSGS: A devastating kidney disease

At age 2, Traejen was diagnosed with a rare autoimmune form of focal segmental glomerulosclerosis (FSGS), where the immune system produces a chemical that causes the filters in the kidneys to leak. His type of FSGS is prone to kidney failure, which happened to Traejen by age 9. That was when his mom, Krista Kingston, donated one of her kidneys, and he underwent a transplant in Oregon, the closest major pediatric transplant center near their home in Boise, Idaho.

“The first week after that initial transplant, things were looking really good,” says Krista. “Shortly after, they started seeing problems and confirmed that FSGS had infiltrated the new kidney.”

Unfortunately, traditional kidney transplants fail in children with autoimmune FSGS over 90% of the time. That’s because the immune system is still programmed by the FSGS, and it aggressively attacks the donor kidney and destroys it, usually within a few weeks.

Dialysis works, but it can’t replace kidneys

While dialysis keeps people in kidney failure alive by doing the job of the kidneys—cleaning the blood and turning waste into urine—it is not a great substitute for the real thing.

“A sad fact about kidney failure treated with dialysis is that it wears down the body over time. Traejen was racked with pain and fatigue; yet he refused to live a life defined by his illness,” says Paul Grimm, MD, medical director of the Pediatric Kidney Transplant Program at Stanford Medicine Children’s Health.

Despite his symptoms from long-term kidney failure, which were fatigue, headaches, itchy skin, a poor appetite, and vomiting, Traejen still didn’t give up. He and his parents learned how to do dialysis at home to give him the best quality of life possible. He spent nearly a decade on home dialysis, from ages 9 to 21.

“I was so sick of dialysis. It was cutting into my free time and stopping me from being able to do a lot of the stuff. And I was living with constant pain. I wanted to play college tennis, and with dialysis I knew I couldn’t do it. I was ready to try anything,” Traejen says.

Dialysis is tough for anyone to endure. So tough that Dr. Grimm says nearly 30% of adults who live on dialysis choose to stop because the wait time for a kidney is too long, their body is too ravaged by disease, or, despite dialysis, living can become too much to bear and it can feel like simply surviving rather than thriving.

“Traejen’s body had taken a severe toll. When we saw him a few years back, his kidney failure had caused several complications, including bone pain, seizures, chronic infection, and deep fatigue that could not be relieved by dialysis alone. He was feeling like he was at the end of his rope,” Dr. Grimm says.

“Yet in the face of despair, we didn’t give up hope,” Krista says.

Hope comes in the form of a revolutionary dual-transplant approach

In 2016, Traejen’s nephrologist (kidney doctor) put the family in touch with Dr. Grimm to talk over solutions. At the time he didn’t have any, but five years later, he did: a groundbreaking procedure called dual immune/solid organ transplant (DISOT). It’s a two-transplant approach, pioneered at Stanford Medicine Children’s Health for certain kidney diseases, including autoimmune FSGS.

DISOT requires a stem cell transplant followed by a kidney transplant, ideally five to 10 months later. The stem cells create a new immune system, and the kidney from the same donor is accepted and flourishes. The idea has been around for decades, yet it has been difficult for researchers to implement. Until now.

“When I met Traejen at 19 years old, he literally told me, ‘I can’t keep doing dialysis.’ He was very clear in his wishes. He said, ‘If you can give me a chance, I am going to take that chance, even if there’s a chance I might die,’” says Alice Bertaina, MD, PhD, a stem cell transplantation specialist and Stem Cell Transplantation and Regenerative Medicine section chief for the Bass Center for Childhood Cancer and Blood Diseases.

“He wanted to take the chance of living a normal life rather than go on with what was happening,” says Dane Kingston, Traejen’s dad. “And we supported him.”  

Lucile Packard Children’s Hospital Stanford is the only hospital in the world that is currently offering the dual immune/solid organ transplant (DISOT). The team earned FDA approval for DISOT in 2022 and was recently featured in the The New England Journal of Medicine. The hitch for Traejen was that he would be the first ever to receive it for autoimmune FSGS. It took incredible courage to say yes.

“Traejen and his family are truly pioneers, as he willingly undertook this process knowing there was no guarantee of success,” Dr. Grimm says.

The first hurdle: Stem cell transplant

Traejen was admitted to Packard Children’s in January 2021 to undergo his stem cell transplant. The hospital has performed more than 1,000 stem cell transplants, and it takes a groundbreaking approach. Dr. Bertaina is the worldwide pioneer and foremost expert in a revolutionary strategy called alpha/beta T-cell depleted haploidentical stem cell transplantation. This method of transplant lets doctors use cells from a partially matched donor by selectively eliminating “bad cells” (alpha/beta T cells) to reduce the risk of graft-versus-host disease. Dr. Bertaina engineered a unique alpha/beta T-cell depleted formula specifically for Traejen.

“What makes the alpha/beta T-cell depleted approach so groundbreaking is that it expands options for children and young adults who don’t have a fully matched donor. We can use virtually any partially matched related or unrelated donor,” Dr. Bertaina says. “In this case, Traejen’s dad.”

The steps in a stem cell transplant (also called a bone marrow transplant) include collecting stem cells from a donor, conditioning the recipient’s body so it is ready to accept the new stem cells, and then transplanting the stem cells by infusing them into the vein. Conditioning requires bone marrow to be eliminated to make room for the new stem cells and avoid rejection. For Traejen, this meant very intense chemotherapy and radiation.  

An added battle: Graft-versus-host disease

Despite the advanced transplant approaches, there was still a small risk of graft-versus-host disease (GvHD). Unfortunately, Traejen developed it. 

“His GvHD was very severe and unusual. I believe it was at least partially related to his autoimmune FSGS and the fact that he had a prior failed kidney transplant,” Dr. Bertaina says.

It proved to be the biggest hurdle that Traejen faced in his care journey. It was one of the worst cases the team had ever seen, and there were times when he, his parents, and his caregivers were not sure he would make it through.  

“I didn’t sleep for two weeks because I was afraid that if I closed my eyes, I might not open them again,” Traejen says. “I was in constant pain, which made me pass out, and the itching was miserable. There were even points that I was asking for death. At one point, I think I was dead because I thought I saw my two grandpas that had passed away a few years prior.”

What helped stop Traejen’s body from rejecting the stem cells was an experimental monoclonal antibody imported from Europe. It’s currently only available in Dr. Bertaina’s home country, Italy.

“They were very aggressive, yet safe, with the treatment. They got approvals for experimental drugs that I don’t think would have happened anywhere else other than Stanford Children’s, where the doctors have connections around the world,” Dane says. “Dr. Bertaina’s team had to inject steroids directly into his liver to slow the graft-versus-host down. One of the nurses told me there were only a few doctors in the U.S. that could do that procedure.”

Traejen survived, but he was severely debilitated. He spent most of 2021 and early 2022 in the hospital, including extensive nutritional, occupational, and physical rehabilitation to manage his frailty, seizures, and pain. He also received psychiatric support to help ease his posttraumatic stress disorder from enduring graft-versus-host-disease and years of kidney failure.

“For all that I have been through, and all of the medical terms and self-care I have learned, I feel like I should get credit for a year of nursing school,” Traejen quips. “And I feel like I should get in-state tuition in California.”

To thank the family, their friends, and the medical team for their support, the family had nearly 500 wristbands made, designed by Traejen, that said, “Team Traejen” on one side and “No kidneys, no problem” on the other—with a tennis ball, of course. 

Ready for kidney transplant

The plan was for Traejen to receive his kidney transplant in the summer of 2021. Of course, it got derailed by graft-versus-host disease and his subsequent recovery. But by February 2022, he was ready.

“Traejen is incredibly tough. He rebounded and worked very hard. He described it as similar to training for a competition. He put on weight, muscle mass, and he met all of the health milestones that we had set, despite his chronic pain and frequent seizures,” Dr. Grimm says.

Thankfully, the kidney transplant went well. Because the stem cell transplant replaces the immune system before the kidney transplant, the risk of the FSGS returning is eliminated, and, at the same time, so is the risk for rejection. 

A huge benefit of the DISOT approach is that the recipient doesn’t have to take anti-rejection medicines for life, only for a short period of time right after transplant. Also, since the body isn’t constantly trying to reject the new kidney, it is expected to last a long time. Typically, people who receive a new kidney early in life need additional transplants down the road, but DISOT is expected to eliminate that need.

Best of all, Traejen’s FSGS is gone.

“Every indicator truly suggests that he is cured,” says Paul Grimm, MD. “If FSGS was going to come back, it should have come back long ago.”

“Because we changed his immune system and gave him the immune system of his father, we consider him cured,” Dr. Bertaina adds. 

A long road, but a road of recovery

Today, Traejen has normal kidney function, and he is off all medications and dialysis—a huge relief. He reports feeling well, and he is gaining physical strength and energy. His rehabilitation is not yet complete, but he is making great progress. He has even been back on the tennis court.

“The progress has been slow, but I feel like I am improving a lot. I had the energy to play two tennis matches the other day,” Traejen says.

Krista coaches the local high school tennis team, and this past season Traejen helped. His younger brother Brevin is on the team, and he’s happy to have his family back at home after living on his own for most of his senior year. Brevin and his older brother Xavier have been a great support for Traejen, along with his sister, Quincee, his friends Mathew and Amaya, and so many others.

The family names faith, sports, family, friends, and community for helping them get through it.

To other kids who face kidney transplants, Traejen has this message: “You can get through it. And if you manage some of your own care, it helps.” He dreams of the day he can go off to college and play tennis. 

“We are grateful to Traejen and his family,” Dr. Bertaina says. “They helped us broaden the use of our dual-transplant approach, empowering us to potentially improve the lives of thousands of children with FSGS and other diseases.

Learn more about dual immune/solid organ transplant (DISOT) >