It’s a relief when you finally receive a diagnosis for the symptoms that have plagued you for years. But that relief turns into a nightmare when a doctor says your life is over, and there’s nothing he can do for you.
Sidney had already endured a lifetime of stomach pains, and by the time she was 20, those pains had become intolerable—especially near her kidney. Doctors near her home in Dallas, Texas, kept telling her she was just suffering from anxiety, until one mentioned the possibility of postural orthostatic tachycardia syndrome (POTS), a condition that causes a fast heart rate, dizziness and fatigue.
Sidney found a doctor who specialized in POTS through social media, and he ran a battery of tests on her. He found that not only was she suffering from POTS, but she also had two blood vessel compression disorders—nutcracker syndrome and median arcuate ligament syndrome (MALS). Unfortunately, he said he couldn’t help her.
“This is where I turned to Facebook,” says Sidney. “My story is very much that social media changed my life. I was looking for people like me who had explanations.”
In 2023, Sidney had surgery to correct her MALS, which she hoped would take away all her pain. But her kidney pain was still there, and she had daily headaches that made it hard to get out of bed. She knew it was nutcracker syndrome that was giving her problems, so she focused on reading posts on that Facebook group. A woman posted that her daughter had been suffering just like Sidney, and she found relief with the Renal Autotransplant Program (RAP) at UW Health in Madison, Wisconsin.
“At that point, I was desperate,” says Sidney. “I was 23 years old and bedridden. We had been to 15 different doctors in the Dallas area, and none of them could help us.”
Sidney called UW Health, described her symptoms to Marcie, the program coordinator, who said she thought the UW Health doctors could help her. When Sidney traveled to Wisconsin and caregivers performed a venogram (a procedure in which a technician injects dye into the veins so they can be seen on an X-ray) the results came back normal. But when they injected dye into her left renal vein, she felt the severe pain she had been experiencing for years. Dr. David Foley, director of the UW Health Renal Autotransplant Program, said that while Sidney wasn’t a traditional case, he believed a renal autotransplant could still help.
“Despite the absence of significant narrowing of the vein on venogram, I thought that the acute angle of the renal vein may be contributing to episodic pain from the left kidney,” says Dr. Foley. “After she got pain relief from a direct anesthetic injection into the left ureter, I felt confident that she would likely benefit from renal auto transplant.”
Sidney underwent a renal autotransplant on March 11, 2024, a procedure in which transplant surgeon and RAP team member Dr. Jenny Philip removed her left kidney and ureter and placed them on the right side of her body to relieve the pressure on her veins.
“It was amazing,” says Sidney. “From the moment I got to UW Health, I was being listened to. Everyone at UW Health is lovely.”
As for the surgery itself, Sidney was out of the hospital in four days and experienced very little pain. “The surgery definitely changed my life,” she says.