Justin travels from Oregon to find relief from his pain

Each time he saw a doctor, he would tell them about the flank pain he was experiencing on his left side, and each time they performed a urinalysis, they would find blood in his urine.

But none of the doctors were able to figure out what was wrong with him, until a nephrologist finally diagnosed him with loin pain hematuria syndrome (LPHS). LPHS is an extremely rare disease that causes severe, unexplained loin pain and blood in the urine. “More or less, I won the lottery in the worst sense possible,” said Justin, who lives in Redmond, Oregon.

Unfortunately, the nephrologist didn’t have any good answers for how Justin could treat his pain. He explained that surgery was an option, but only at a select few places—so he recommended that Justin just continue seeking treatment for his pain.

After undergoing multiple failed procedures, including a celiac plexus block (a pain relief treatment delivered by injection) that temporarily paralyzed his legs, Justin went online. That’s where he found the Renal Autotransplant Program (RAP) at UW Health in Madison, Wisconsin. “It was the first little glimmer of hope for me,” he said.

Justin connected with the team at UW Health, who asked that he undergo some tests with a local urologist so they could determine if he, indeed, had LPHS. Sure enough, the tests increased his pain, and Dr. David Foley, MD, a transplant surgeon, and the medical director of the RAP, said there was enough evidence to confirm Justin had LPHS.

Justin and his mother flew to Madison, where they met Dr. Foley and the rest of the team. On Nov. 26, 2023, Justin underwent a renal autotransplant, a procedure in which Dr. Foley removed Justin’s left kidney and ureter and replaced them lower in his abdomen to relieve the pressure on his veins.

Since the surgery, Justin has marveled at how much better he is feeling. “I definitely feel a difference,” he said. “The side pain is minimal, if not gone.”

He said he feels grateful for the team at UW Health. “It’s been fantastic,” he said. “They actually listened to me and my concerns and took the time to hear my side of the story.

He’s now looking toward the future. In fact, after his surgery, he told his girlfriend that the doctors pulled a “giant stone” out of him, and asked if she would like to see it. He then proceeded to propose to her with a diamond ring.

“Overall, I’m hopeful and really excited for the next chapter,” he said.