Renal autotransplant relieves Sophia's pain

“I told her I wanted Sophia to have a livable life,” says Melinda.

Now, after undergoing a renal autotransplant at University Hospital in Madison, Wisconsin, Sophia, now 19, is feeling much better and is hopeful for a bright future.

Sophia first started inexplicably vomiting in 2017. Her parents took her to a long list of specialists and tried many different types of therapies, including medication, physical therapy and chiropractic healing. By May 2018, she had vomited so much her ribs were thrown out of place, and doctors had to remove three ribs so she could breathe more easily.

Despite many, many different rounds of medications, the cycle continued. Sophia and her parents grew frustrated with caregivers’ assessment of the situation. “People called her anorexic and bulimic,” says Melinda. “They were very condescending. They couldn’t figure it out, so they assumed it must all be in her head.”

As Sophia’s situation grew worse, her parents were more and more concerned. In September 2019, she started throwing up and never stopped, often vomiting up to 50 times a day. In September 2020, she had a permanent feeding tube placed.

“They basically told me my stomach had stopped working,” says Sophia. “They told me I had motility problems, but none of the motility medications were working for me.”

At one of the hospitals Sophia visited, a doctor suggested she might have median arcuate ligament syndrome (MALS), a condition in which a band of tissue in the chest presses on an artery that supplies blood to the upper organs. They reached out to a MALS specialist in Connecticut, and Sophia had a successful surgery in April 2021 that relieved the compression and allowed her to eat again.

In September 2021, however, Sophia’s nausea and vomiting came back full force, and she started experiencing pain in her left side. Through social media groups, the Moores knew MALS was often linked to nutcracker syndrome, a vein compression disorder. They learned about the UW Health Renal Autotransplant Program, which helped people with nutcracker syndrome and other compression disorders, and they traveled from their home in eastern Minnesota to Madison for testing in February 2022.

Staff at UW Health performed a venogram—an X-ray test in which they injected dye into her veins to show how blood flowed through them. Sure enough, Sophia’s vein compression was so severe that her body had created additional veins just so her blood would have somewhere to go. Her blood could flow into her kidney, but it couldn’t easily flow back out, which was causing stress on her kidney.

On March 9, 2022, David Foley, MD, transplant surgeon and medical director of the renal autotransplant program, performed surgery on Sophia. He removed her left kidney and ureter, cleaned up the kidney and put it back in her right pelvic area.

The procedure worked. “Right out of surgery, I felt literally no pain on my left side,” says Sophia. “I only had surgical pain. I immediately felt so much less nauseous.”

The next month, doctors were able to take Sophia’s feeding tube out, and though she had a limited diet at first, she was finally eating food again. This summer, she hopes to return to classes at the University of Minnesota Rochester, where she had started college in fall 2021 before needing to take a medical leave.

“I’m relieved,” says Melinda. “This has been so long, and it’s been hard to watch. It was really nice to find people who actually understood this problem.”