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Many people have never even heard of vascular compression syndromes. Not only is Sarah Searfoss familiar with them, but she has also experienced enough different conditions to know they are very, very painful — and hard to diagnose.
After emergency room doctors dismissed her as anorexic, bulimic and a drug-seeker, she was forced to rely on her own research to find a solution to her health problems. That led her to the UW Health Renal Autotransplant Program (RAP), where she finally found a treatment that worked.
Sarah, 43, knows now that she has had vascular compression issues her whole life. But she first started experiencing debilitating symptoms in 2019. She felt sick to her stomach and was vomiting all the time, and she had chronic pain in her back and stomach area. An emergency room doctor diagnosed her with superior mesenteric artery syndrome (SMA), a condition that occurs when two arteries pinch the small intestine. But other doctors rejected the diagnosis and accused her of making up her symptoms.
Near the end of 2019, Sarah learned about nutcracker syndrome, which occurs when two arteries pinch the left renal vein, causing blood to flow backward. Through her online research, she became convinced she suffered from nutcracker syndrome, too (it turned out she also had several other compression syndromes, as well). That was what was causing her extreme pain. A doctor confirmed her self-diagnosis, but the question remained: How could she solve her problem? “I was in so much pain, I couldn’t function at all,” she said. “It was horrible.”
Sarah, who lives in Reedsburg, Wis., connected with transplant coordinators at UW Health’s RAP program, who told her about their kidney autotransplant procedure. During the surgery, the doctor removes the patient’s kidney and ureter and places them in a different spot in the body, thus relieving the compression. Sarah was eager to schedule her surgery as soon as possible, but she had to wait for another surgeon to join the program. She also had to undergo a procedure to fix yet another compression syndrome, celiac artery compression.
In early 2021, she began testing with the UW Health RAP, and scheduled her surgery for May 24, 2021, with transplant surgeon David Foley, MD. “It was great to meet with him,” she said. “I had never been treated that way before. Someone automatically believed me and knew exactly what I was talking about.”
The surgery did what it was supposed to do — it eliminated her pain. While Sarah is still working with doctors to treat some of her other compression syndromes, the kidney autotransplant has helped her live her life again. “The pain is what kept me from getting out and doing things and leaving my bed,” she said. “I feel better now.”