Molly finds answers, relief through UW Health Renal Autotransplant Program

That all changed when she connected with the UW Health Renal Autotransplant (RAP) Program and underwent a kidney autotransplant in May 2023. The procedure went better than she could have ever anticipated, and now Molly is fully living her life again.

Finding her answers

Molly first heard the term “loin pain hematuria syndrome (LPHS)” when she experienced a kidney biopsy in Kansas City, Missouri. A nephrologist (kidney doctor) there had run a multitude of tests trying to determine what was wrong with her, and he concluded she had LPHS, a rare disorder characterized by blood in the urine and severe, unexplained loin pain.

The problem was that he didn’t know how to treat it, other than referring her to a pain management specialist. Over the years, as she moved from Missouri to Oklahoma, doctors lectured her on the dangers of becoming addicted to opioids.

“I kept a file that I would take to the hospital when I was in pain, showing them that I had undergone a kidney biopsy and received this diagnosis,” she said. “I had to really advocate for myself.”

Finally, after many conversations with doctors about the best way to eliminate her pain, Molly found the RAP Program at UW Health, which listed LPHS as one of the conditions treated. She had first learned about the clinic through Facebook groups that are filled with women who had the same kind of pain as she did. They talked about undergoing a kidney autotransplant, during which the doctor removed their kidney and ureter and placed it in a different part of their abdomen, but Molly was frightened by the idea of undergoing such a major surgery.

“I started asking a lot of questions in those Facebook groups,” she said. “I never met one person who had experienced a bad result.”

Because of those positive interactions, Molly decided to move forward with the experts at UW Health.

Finding relief

Molly and her husband took time off work to travel from their home in Grove, Oklahoma, to UW Health in Madison, Wisconsin. Even though flight delays meant they arrived in Madison a full day later than planned, transplant coordinator Shanee Ellison “worked miracles” and arranged for Molly to meet with two days’ worth of providers in half that time.

“I’ve never met with so many physicians in one day in my life,” Molly said.

The UW Health doctors agreed a kidney autotransplant was Molly’s best chance for long-lasting pain relief. They scheduled the procedure for the end of May and Molly and her husband quickly started planning to be off work while staying in Madison for several weeks.

As she prepared for the surgery, Molly was fully expecting to be in tremendous pain after the procedure, but she wasn’t. In fact, just hours after surgery, she was walking the halls at University Hospital.

“It was like waking up to a new me,” she said. “It was crazy how good I felt. At the hospital they took such good care of me, which has made the recovery so much better.”