Loin Pain Hematuria Syndrome Clinic Patient Stories
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Grace Balasic was always a very active, energetic teenager. As a senior in high school, the Harrisonburg, Virginia girl volunteered and babysat and was preparing to go on a mission trip to Guatemala. But all that was sidelined when she became very ill at age 17. She had always been a healthy eater, but was constantly nauseated and couldn’t eat more than a few bites of food without throwing up. She saw her pediatrician many times and endured countless blood tests, emergency department visits and computed tomography (CT) scans. Eventually, her doctor declared there was nothing wrong with her, which was frustrating to her.
Finally, in November 2016, she saw a gastroenterologist who diagnosed her with superior mesenteric artery syndrome, a rare disorder in which a portion of the duodenum is compressed between the abdominal aorta and the superior mesenteric artery due to lack of a fat plate. Due to the severity of that compression, she couldn’t process food and water and needed a feeding tube for several months. When the feeding tube came out in February 2017, her doctor assured her she would be fine — but within a week, all her symptoms had returned.
She started seeing a vascular doctor in April 2017, who diagnosed her with nutcracker syndrome, a disorder that can lead to loin pain hematuria syndrome (LPHS). LPHS causes excruciating loin pain on one or both sides of the body and blood in the urine. The doctor recommended a left renal vein transposition — a procedure that could relieve the pressure that was causing so much pain. But there was only a 50 percent chance it would work. “I was in such pain,” she says, “that even though it was such a major, risky surgery, I had to try.”
She underwent the surgery in June, but by September, it was clear it hadn’t worked. Desperate, Grace and her parents learned about the kidney autotransplant program at University Hospital in Madison, Wisconsin. They traveled to Madison in March 2018, and Grace underwent a special lidocaine test—developed at University Hospital—that showed she was a candidate for the procedure. On May 16, 2018, she went back to Madison, where transplant surgeons Hans Sollinger, MD, and Robert Redfield, MD, removed her kidney and transplanted it elsewhere in her body. After Grace’s initial recovery period, she felt much better. “I have not had any of the pain that I did before the operation,” she says. “It blows our minds how well this procedure worked.”
Now 19, she is dating, traveling, returning to light exercise, and pursuing working full time as an independent Mary Kay Cosmetics consultant. “There are no words to adequately express my deepest, sincerest gratitude to Drs. Sollinger and Redfield and the autotransplant team for giving me this second chance at life,” she says. “The expertise and quality of care at University Hospital is superior in every way. I wouldn’t want medical care anywhere else!” For more information about her story, you can visit her personal blog.
When Peyton Byrd was 18 years old, she felt like her life was completely hopeless. The woman from Knoxville, Tenn., was in excruciating pain every day and when she saw local doctors, they accused her of seeking pain medications. "I felt helpless," she says. "All people wanted to do was give me pain medications or shrug their shoulders at me."
Peyton's health problems began when she passed her first kidney stone at age 10. She started passing kidney stones twice a year until she was 15, when she was passing them monthly.
By age 16, she began experiencing similar pain once every week, but her doctor told her she wasn't passing stones at all - she was just in pain for seemingly no reason, while also vomiting and shaking uncontrollably.
Her junior year in high school, she was diagnosed with renal nutcracker syndrome, a condition that occurs when the left renal vein becomes compressed. She underwent surgery three times to try to move and decompress her vein, but it didn't work. In the end, she lost her left kidney. Even with only one kidney remaining, Peyton continued to have severe disabling pain.
Peyton's mother was desperately seeking answers on the Internet when she came across Hans Sollinger, MD, transplant surgeon at UW Health in Madison. She learned Dr. Sollinger had helped other girls who experienced similar pain, and she decided to contact him. That connection was what gave Peyton her life back.
Dr. Sollinger asked Peyton to come to Madison and undergo a lidocaine test. This test, which Dr. Sollinger developed three years ago, became a game changer for her. A urologist injected a pain relief medication into her ureter. Over the next day, she was free from pain, which confirmed that her pain was originating in her ureter. Dr. Sollinger diagnosed Peyton with loin pain hematuria syndrome, a rare disorder that causes recurring loin pain and blood in the urine.
On Dec. 2, 2016, Dr. Sollinger and Robert Redfield, MD, transplant surgeon at UW Health, performed a kidney autotransplant, removing her right kidney and almost all her ureter, and replacing her kidney in a different location. This procedure was complicated by the fact that she had only one kidney, and this kidney had two arteries. Any technical mishaps and Peyton would have been on dialysis. Fortunately, everything went well.
Now 21, Peyton is a surgical tech student at the Tennessee College of Applied Technology, and she hopes to become a physician's assistant someday. In addition to being a full-time student, she works in the surgery department at a local hospital and exercises every day. "I never thought I would be able to do so much," she says. "Dr. Sollinger and Dr. Redfield are my heroes."
Kristin Meurrens estimates she has undergone more than 100 computed tomography (CT) scans. The 38-year-old’s medical problems began when she was 16 and was enduring painful periods and ovarian cysts. The issues continued as she experienced three ectopic pregnancies. She was misdiagnosed with interstitial cystitis (IC) — a painful bladder condition for which there is no cure. She underwent several procedures in hopes of relief from her IC pain, including cystoscopies and Botox injections into her bladder wall, but nothing helped. Eventually, she grew so discouraged that she confined herself to her room and was unable to take care of her family. “The doctors at one hospital told me I had exceeded their capabilities, and they could no longer care for me,” she says. “I just sort of gave up.”
Then, a young emergency room doctor at a local hospital theorized that Kristin might be suffering from loin pain hematuria syndrome (LPHS), a rare disorder that results in debilitating flank pain and blood in the urine. She began researching it online and came upon a Facebook group that mentioned Hans Sollinger, MD, transplant surgeon at UW Health in Madison, Wisconsin. Dr. Sollinger and Robert Redfield, MD, also a transplant surgeon at UW Health, were performing a groundbreaking kidney autotransplant that had miraculously cured others with LPHS. Kristin, who lives in Prince Frederick, Maryland, traveled to Wisconsin for a medical evaluation.
At UW Health, Kristin underwent a lidocaine test, which Dr. Sollinger had developed three years prior. During the test, a urologist injected a pain relief medication into her ureter. Over the next day, she was free from pain, which confirmed for doctors at UW Health that her pain was originating in her ureter and she had been suffering from LPHS. “That was by far one of the best days of my life,” she says. “For the first time in many, many years, I felt no pain and I finally had answers. Suddenly, my hope had been restored.”
Kristin also learned something very important that doctors had overlooked during the past two decades: Her left renal vein was compressed between her aorta and vertebral column, a condition known as posterior nutcracker syndrome. The compression was linked to all of Kristin’s health problems, including the LPHS which had made it difficult for her to do just about anything.
A month after the lidocaine test, Drs. Sollinger and Redfield performed a kidney autotransplant on Kristin. They removed her left kidney and placed it in her right pelvic area. “It’s all like a jigsaw puzzle,” says Kristin. “When you have compression of your left renal vein, it will affect your body from the bottom up. In my case, the blood started to pool and engorge all the veins in my pelvic area, including my ureter vein.”
The procedure worked, and Kristin’s pain was gone. For her, it was miraculous because she had spent so many years seeking help for her debilitating pain. “Doctors labeled me a drug-seeker,” she says. “Every time I had a flare-up, they sent me to a CT scan. That was their way of determining whether I was going to receive pain medication that day.”
They prescribed countless medications for Kristin’s supposed interstitial cystitis, including drugs that made her hair fall out and turned the whites of her eyes yellow. As she became sicker and sicker, one doctor offered to remove her bladder in the hopes that that would take away her pain. She elected not to take this extreme step — and now she’s glad she did.
“The kidney autotransplant changed everything for me — my blood pressure, the rhythm of my heart,” she says. “It gave me my life back. It gave my family their mom, wife, daughter and sister back. I work full time now, and I have not taken any pain medications in more than a year. Dr. Redfield and Dr. Sollinger restored hope in me again.”
When the University of Oregon Class of 2018 celebrated its commencement, there was one graduate who was particularly grateful to be marking this accomplishment. Karen Seifert, who started college in 2011, had suffered through a small bowel repair, two other major surgeries, and a period during which she was nearly homebound. Because of her medical issues and her need to take time off, it took Karen seven years — but after a kidney autotransplant at University Hospital in Madison, Wisconsin, she was finally healthy enough to finish school and start her professional life.
In 2014, Karen was diagnosed with superior mesenteric artery syndrome, a disorder in which a portion of the duodenum is compressed between the abdominal aorta and the superior mesenteric artery due to lack of a fat plate. Because of that, she experienced severe weight loss and needed a feeding tube for a short amount of time to try to obtain the nutrition she needed. Her doctors hoped the feeding tube would help the fat plate grow back, but it didn’t, so they performed a surgery during which they rebuilt her fat plate and rerouted her small intestine. That helped for a while, but she continued to experience problems and saw doctor after doctor, hoping for an answer.
After multiple diagnoses — including a small bowel blockage and median arcuate ligament syndrome (MALS), a condition in which the median arcuate ligament presses too tightly on the celiac artery and for which Karen had another surgery — she was diagnosed with nutcracker syndrome, yet another vascular compression disorder that can lead to loin pain hematuria syndrome (LPHS). LPHS causes loin pain on one or both sides of the body and blood in the urine. For Karen, it resulted in more than just pain — she also had extreme nausea, difficulty urinating, fatigue and weakness. She had to withdraw from school and move home to Newport, Oregon, with her parents because she was too weak to go to class. “It was debilitating to the point where I struggled to make it off the couch to go to the grocery store,” says Karen.
Unfortunately, no one in Oregon had any good options for treating Karen. Then, her mother learned about the LPHS Clinic at UW Health through a Facebook group. She also found that Hans Sollinger, MD, and Robert Redfield, MD, transplant surgeons at UW Health, performed kidney autotransplants which had resulted in miraculous recoveries for other patients. Karen and her mother visited UW Health in August 2017, and three months later, Karen had the autotransplant. Drs. Sollinger and Redfield removed Karen’s kidney and transplanted it into a new location.
Karen’s recovery was difficult, but her pain faded, and she slowly regained some of the energy she had lost. She was able to return to school for the spring 2018 semester, and she graduated just a few months later. Karen found a job as an e-learning teacher at a high school in her hometown, and she hopes to earn her master’s degree in school counseling.
“My health is better than I could have imagined it being right now,” she says. “I believe God brought me to UW Health, which ended up being a true blessing.”
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