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Recently, a TV medical drama aired an episode about a patient who suffered from a rare, painful problem called loin pain hematuria syndrome (LPHS). Over the course of the hour-long episode, the woman’s doctors diagnosed her condition, performed a kidney autotransplant and eliminated her pain. And the woman lived happily ever after.
Josh Young laughed when he saw that episode. He knows from personal experience that it’s not quite so easy—and that a person with LPHS usually must undergo many trials before they can finally find relief. Fortunately, he feels like he has gotten to that point after he found the UW Health Renal Autotransplant Program in Madison, Wisconsin.
Josh’s problems first started in 2015. The Wylie, Texas, financial advisor was on his way back from a meeting with a client when he experienced crippling pain, sweating and vomiting. At the emergency room, he learned he had a kidney stone—the first of many kidney stones and subsequent trips to the ER. After a while, tests revealed that his kidney stones had passed, but Josh continued to experience debilitating pain and blood in his urine. Over the next few years, he had several surgeries to remove kidney stones and repair his kidney.
After the first three or four ER trips, caregivers at Josh’s local hospital labeled him as a drug-seeker. “I just dreaded going to the ER, but I knew that’s what I had to do to get my symptoms under control,” he said. “I told them, ‘I can’t fake this. I can’t fake the blood that’s in my urine.’”
Josh’s wife, Crystal, an intensive care unit nurse, worked with a nephrologist who printed out an article about LPHS, a condition characterized by extreme flank pain and blood in the urine. They determined that’s what Josh had, but there were no easy answers. Even when they traveled across the country to visit other renowned medical centers, doctors told him he was just going to have to live with the pain.
He found support groups via social media and learned that UW Health had a treatment—a renal autotransplant in which the surgeon removes the ureter and kidney and puts it in a different part of the body—but Josh didn’t think he was a candidate. After connecting with the UW Health team, he decided to fly to Wisconsin and check it out.
In July 2019, Josh underwent an autotransplant on his left kidney. “Everything was amazing for several months,” he says. “But during my first follow-up visit, we talked about the possibility that the problems could move to the other kidney.”
Sure enough, they did. In early 2020, Josh started feeling similar pain near his right kidney. However, the world was completely locked down because of the COVID-19 pandemic, so he lived with the pain while waiting for travel to be safe. In September 2021, Dr. David Foley, medical director of the renal autotransplant program at UW Health, performed an autotransplant on his right kidney, and he and Crystal stayed at Restoring Hope Transplant House in Middleton, Wisconsin, while he recovered. “Restoring Hope was really a blessing to me and my family, as well as many others,” he says.
The autotransplant was successful, and his pain is gone. “Dr. Foley and Dr. Danobeitia were angels on earth in my treatment, diagnosis and surgical transplant procedures,” he says. “After the most recent transplant, I ended up in the ER with internal bleeding from ulcers, and they rushed to my side in the ER and were extremely attentive during my recovery.”
Josh’s journey hasn’t echoed a TV medical drama. He endured multiple surgeries for kidney stones and an anatomical kidney repair before his first transplant, and three other stone removals before and after his second transplant, but now Josh is back to living his life. He works full time, and when he’s at home, he plays with his 5-year-old daughter, Ivy. “I’m playing catch-up on all those moments I lost with my daughter—going to the park, dancing and just being together.”
In February 2022, he attended a daddy-daughter dance with Ivy, dressing up in his nicest suit and picking her up at the front door. “I’m back to being a dad and husband, and not just being locked up in the bedroom all the time,” he says.
While Josh considered locations closer to home for his second autotransplant, he chose UW Health. “The care was phenomenal,” he says. “My wife, the ICU nurse, said they run this place so, so well.”