July 8, 2019

An incessant itch left this nurse in 'agony'—until one doctor dug deep into her medical past

Daily Briefing

    Editor's note: This popular story from the Daily Briefing's archives was republished on Jan. 5, 2021.

    Leslie Lavender, a 60-year-old retired nurse practitioner, was devastated by an "incessant itch" that left her in "agony" for over a year, until one day a specialist dug into her medical history to find an explanation other doctors had overlooked, Sandra Boodman reports for the Washington Post.

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    The mysterious itch

    The itching started in March 2017.

    "I was just clawing at myself," Lavender said. "I ran through a list of possibilities: Do I have a rash? Hives? An allergy? ... I was a mess." Lavender said she scratched herself so much that her arms and legs were covered in welts, which sometimes became infected.

    And nothing brought her relief. The itch was "impervious to antihistamines, dietary changes, and special creams," she said.

    To get to the bottom of the itch, Lavender's internist sent her to a dermatologist, who ruled out skin cancer and autoimmune diseases that can cause itching.

    A second dermatologist sent Lavender to a hematologist, who determined that Lavender's tests were normal, except for elevated alkaline phosphatase (ALP), which had shown up on tests in the past. High ALP can indicate liver or bone issues, but even though Lavender had a history of gastroenterological issues, Lavender's internist hadn't thought much of the findings, Boodman reports.  

    The hematologist sent Lavender to a gastroenterologist, who ruled out liver cancer, but said he suspected Lavender had sclerosing cholangitis, a liver disease caused by scarring of the bile ducts or inflammation.

    The gastroenterologist said that, if the diagnosis was correct, Lavender might be nearing liver failure, meaning she'd need a transplant in four to five years.

     A look 'back in time'

    In June 2018, the gastroenterologist referred Lavender to Roger Jenkins, a liver transplant expert at Lahey Hospital & Medical Center in Massachusetts.

    Lavender said that when she visited Jenkins, it seemed that he "just knew" the reason for her itching. To get the answer, he told her, "What you really have to do is go back in time."

    When Jenkins looked at Lavender's medical history, he focused on a chain of events that unfolded years ago. In January 2010 Lavender had experienced a severe gallbladder attack and underwent a laparoscopic cholecystectomy—a minimally invasive procedure to remove her gallbladder. One of the risks of the procedure is it may limit the surgeon's ability to see, which can result in injury to the bile ducts.

    One week after Lavender was discharged following that procedure, she experienced intense abdominal pain and vomiting. She went back to the hospital, a CT scan revealed that she had a bile leak, resulting in fluid pooling in her abdomen. Doctors washed out the bile and sent her home.

    Three days after Lavender was discharged, Lavender couldn't keep down water, so she returned to the hospital, where doctors readmitted her and inserted a temporary drain that doctors took out three weeks later.

    As the ordeal unfolded, Lavender learned that she had an "unusual anatomical variation," called an accessory bile duct, according to Boodman. A surgeon closed off the duct to prevent future bile leaks.

    After a rough recovery, Lavender stopped experiencing severe abdominal pain—yet she "didn't feel entirely well," Boodman writes. While most measures looked normal, Lavender's internist did notice an elevated ALP, but "nobody seemed too concerned about it," Lavender said.

    Diagnosis and recovery

    Looking back at Lavender's gallbladder surgery and the events that followed, Jenkins was able to solve the mystery surrounding her itchiness.

    Jenkins explained that the surgeon who closed off the duct to prevent future bile leaks had made a mistake. According to Jenkins, the surgeon at the time likely thought Lavender's right hepatic bile duct, which drains bile from the liver, was an accessory duct and sewed it closed.

    In multiple instances after that, providers misread scans and tests, thinking they showed a left and right hepatic duct, when they were actually two branches of the left duct. This error created a situation that could explain Lavender's itching.

    While "[m]ost injuries from a lap chole[cystectomy] are recognized at the time," Lavender's error may have gone unrecognized because her anatomy strays from the norm, Jenkins said. He noted that over the years providers likely misread scans and tests, thinking they showed a left and right hepatic duct, when they were actually two branches of the left duct.

    Jenkins said that removing the right lobe of Lavender's liver would stop the itching and that the left lobe would grow larger and compensate for the missing part.

    Surgeons performed the operation nine days later and within several weeks, the itching completely disappeared and Lavender began to make a full recovery.  "I feel great," she said. "When [Jenkins] said, 'I can help you,'" Lavender said, "it was a miracle" (Boodman, Washington Post, 6/22).

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