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Back when she was still able to work, Meg Roope was passionate about teaching teens and pre-teens the dangers of substance use disorder.
As a community outreach registered nurse, she was on the board of three different drug coalitions in the counties she served, and she was proud of the progress she made in developing community relationships.
So, it was especially discouraging for the Greensburg, Indiana, woman when she started suffering mysterious pains in Fall 2021, and some providers in the hospital setting questioned her pain and treated her like she was a drug seeker. “It was devastating because I knew something was wrong and I just wanted to get better,” she said.
Eventually, Meg learned there was a name for her mysterious pain: loin pain hematuria syndrome (LPHS), a rare pain syndrome characterized by extreme flank pain and blood in the urine that is not well understood.
Meg’s pain was primarily in the right flank area, below her chest and above her pelvis. At first, she wondered if she was suffering from urinary tract infections because she was also experiencing blood in her urine. Doctors theorized she had nephritic syndrome, a group of symptoms that involve inflammation in the kidneys.
Meg was in the emergency room every two weeks until her family doctor sent her to a nearby academic medical center, where a urologist first suggested she might have LPHS. “I read about it and thought, I don’t want that!” Meg recalls.
The doctors at that facility told her if she did have LPHS, they didn’t know how to treat it. She sought out support groups online, which was how she found UW Health. In 2022, the mom of three and her husband, Blake, traveled to Madison to learn about renal autotransplant, a surgery that involves removing the kidney and ureter and placing them in a different location lower in the abdomen. University Hospital in Madison is one of only a few facilities in the United States with a dedicated renal autotransplant program.
Meg underwent her surgery on her right side in late 2022 under the skilled hands of Dr. David Foley, transplant surgeon at UW Health, and on her left side in early 2023. “It’s just incredible,” she said. “I cannot stop smiling. I feel like I have my life back again. I feel like there’s been God’s fingerprints on our entire journey.”