For months, Piper Larson believed she had Long COVID—the continuation of symptoms after a person is infected with the COVID-19 virus.
She had good reason: Though Piper had long experienced gastrointestinal problems, she was able to function, participate in marathons and run her successful dental practice. But after she contracted the virus, the bottom seemed to drop out on Piper's symptoms—migraines, unexplained pain in her flank area, brain fog and exhaustion.
“I started to get this shake, like there wasn’t enough blood flow going to my muscles,” she said.
Piper’s doctors referred her to Long COVID specialists, and more than two years later, she had the opportunity to read her own medical records. She was shocked to discover that in 2016, long before COVID-19, an emergency room radiologist wrote that they suspected she had nutcracker syndrome, a rare vein compression disorder.
“Nobody ever told me that,” Piper said. “I started research nutcracker syndrome and learned about the symptoms. I thought, that’s me!”
Piper, who lives in Louisville, Nebraska, waited six months for a nephrologist appointment, only to have the doctor refuse to order her a computed tomography (CT) scan. Piper said the doctor thought she was crazy for believing she had nutcracker syndrome, but eventually wrote an order for the scan.
She sent the scan to her best friend’s husband, a transplant surgeon who trained at the UW Health Transplant Center in Madison. The husband said he thought she had nutcracker syndrome, too, and advised her to seek care at UW Health.
Piper and her husband went to Madison in late 2023 for a consultation, and after doctors performed extensive testing on her, they recommended she undergo a renal autotransplant. During the procedure, a doctor removes the patient’s kidney and ureter and places them in a different part of their abdomen, thus relieving the vein compression that has caused so many problems.
“My husband and I walked away from that appointment saying, ‘This is where we belong,’” said Piper. “Everyone here was so comfortable and kind. You could tell that they really cared.”
Piper underwent her renal autotransplant on Jan. 25, 2004. While she still has a relatively low amount of energy, she says, her flank pain is completely gone, and so are her headaches.
Over the last few months, she and her husband have discovered that their 18-year-old son also suffers from nutcracker syndrome, so they’re preparing to have him evaluated in Madison, as well.
“I very much trust the team there,” she said. “I wish we would have done the surgery years and years before. Then things probably wouldn’t have gotten so bad.”
