Leslie Lavender knew the outfit she wore The wedding of her younger daughter in April 2017 was unusual for the bride's mother. But dark trousers and a long-sleeved top, she decided, were the best way to hide the damage caused by an incessant itch that was insensitive to antihistamines, dietary changes, and special creams.
"I just hit myself," Lavender recalled. The then 60-year-old lives in Stockton Springs, a tiny town 110 miles north of Portland, Maine.
The retired nurse spent more than a year visiting various specialists, each of whom was surprised by the ruining problem Lavender's life.
A consultation with a Boston expert in June 2018 proved crucial. He made the elusive link between Lavender's relentless itch and an event that had occurred almost a decade earlier.
"When he said, 'I can help you,'" Lavender recalled, "it was a miracle."
In January 2010, Lavender suffered a severe gallbladder attack on the last night of a cruise around the Panama Canal. She had suffered attacks before, but this incident was much worse. The sharp stomach aches made her double for hours.
"I come from a long line of women who have lost their gallbladder in the end," she said, referring to her mother and grandmother.
Home in Northern Kentucky Where she and her husband Michael, a gynecologist, lived, Lavender underwent an ultrasound in which a peanut-sized gallstone blocked her gallbladder. The pear-shaped organ sits under the liver and stores the bile, which supports the digestion of fat.
Lavender was soon subjected to a laparoscopic cholecystectomy, a common gallbladder surgery. In minimally invasive surgery, the organ is harvested from a small incision rather than a single large incision. Laparoscopic surgery promises less pain and faster recovery than the conventional open procedure.
More than 90 percent of gallbladder removal operations are now performed laparoscopically. However, this method may limit the surgeon's vision and lead to bile injury channels – a potentially lethal mistake if not treated promptly. It is estimated that bile duct injury occurs in 1 in 1,000 laparoscopic surgeries and less frequently in open surgery.
Lavender's operation seemed routine. She was released after spending a night in the hospital.
But a week later she started vomiting and had severe abdominal pain.
"I'm going to die," she said to a doctor who had sent her to a CT scan, revealing the laughter of the fluid in her abdomen. The doctors discovered a gall bladder and admitted that they should wash out the corrosive bile and fix the problem.
Three days after her second discharge, Lavender was back in hospital unable to drink a sip of water. The doctors picked them up and performed a procedure to set a temporary drainage, which was removed after six weeks.
After the third operation, the surgeon informed Lavender that she had an unusual anatomical variation known as the accessory bile duct of Luschka, which was closed to prevent further leakage.
The next few months were rocky. Lavender developed a debilitating infection that was caused by Clostridium difficile bacteria, which may result from the use of antibiotics. She recovered slowly and moved 1,100 miles north to the coast of Maine later that year with her husband.
Not quite normal
In the years following her surgery, Lavender stated that she never again had severe pain. But she did not feel well.
"I lived a mostly normal life and watched my diet," she said. Acid blockers and other medicines did not seem to help, so she stopped taking them.
During her routine check-up, her internist in Maine found that her alkaline phosphatase (ALP) level was constantly elevated. Elevated ALP levels may indicate liver or bone problems.
"I questioned it, but nobody seemed too worried about it," recalled Lavender, who said physicians considered the increase irrelevant.
The itching began in March 2017. Lavender was in Omaha, visiting her older daughter.
"It was just crazy," she said. "I've looked through a list of options: Do I have a rash? Hives? An allergy? What am I eating? "Nothing seemed to explain it."
And little seemed to ease it.
"I was a mess," she recalled. She had scratched so hard that her arms and legs were criss-crossed with furious bites that sometimes became inflamed.
Lavenders internist sent her to a dermatologist who ordered extensive lab tests to rule out multiple myelomas and other cancers, as well as multiple autoimmune diseases that can cause severe itching.
The dermatologist gave her a steroid ointment and prescribed a large dose of oral steroids to quench the itch. But the ointment made Lavender's skin so thin that it started to break. And when she stopped taking oral steroids, the itch roared back.
A second dermatologist she saw in January 2018 said her problem was not dermatological. He sent her to a hematologist who ordered a CT scan and extensive blood tests. Everything except the elevated ALP was normal.
The hematologist sent her to a gastroenterologist in Portland. After ruling out liver cirrhosis and liver cancer, he told Lavender that he had suspected sclerosing cholangitis, a liver disease caused by inflammation or scarring of the biliary tract.
Michael Lavender recalls the gastroenterologist, who told him his wife might be heading for liver failure. I need a transplant in four or five years.
Apparently expecting this possibility, he referred Lavender to Roger L. Jenkins, a liver transplant expert at Lahey Hospital & Medical Center, Burlington, Massachusetts, a suburb of Boston.
Jenkins, a pioneer of liver transplantation, is Emeritus Professor of Surgery at Lahey University who is running one of the country's busiest liver transplant programs.
A Critical Review
By the time she arrived in Lahey in June 2018, Lavender was desperate.
She found it increasingly difficult to live with itching, which had eluded both identification of the underlying cause and effective treatment. And the idea that she might need a transplant was overwhelming.
"I told Michael, 'I love you, but I do not have liver transplantation,'" she recalled.
In preparation for her visit, Jenkins received her notes from Kentucky and Maine.
"What you really need to do is travel back in time," he said.
The answer seemed to be clear, Jenkins said, seeming to go back to something that happened during Lavender's gall bladder operation.
It appeared that the surgeon mistakenly mistook Lavender's right bile duct for an accessory channel. (Leverage drains the bile from the liver.) Over the years, subsequent scans and tests were repeatedly misinterpreted because they showed left and right liver passages, although they were actually two branches of the left duct. Lavender's liver was the source of the itching.
"Miraculously," Jenkins noted that the right lobe of the organ was not stunted as expected. "This is very unusual," he said, "but not uncommon."
One reason the bug could have gone undetected for so long, Jenkins guessed, might be that Lavender's anatomy differs indefinitely from the norm.
] "Most injuries from a Lap Chole [cystectomy] are detected at the time," Jenkins said.
A few years before he saw Lavender, Jenkins had treated a young woman with a similar gall bladder injury.
Jenkins recommended removing the right lobe from Lavender's liver to stop the itching; The left lobe should grow to compensate for the missing part. The other option was a full-scale reconstructive operation that Jenkins said might not work.
Lavender, the surgeon wrote in his consultation report, suffered from the itching and said she did not want to "live" if the problem could not be repaired.
Lavender was down to earth – and enthusiastic.
"He just knew it," she said of Jenkins. "I felt the Lord had sent me to the right place."
The three-and-a-half hour operation, which took place nine days later, went smoothly.
It took several weeks for the itchiness to completely disappear, and five months before the grueling postoperative fatigue, Jenkins had warned her that she had disappeared. Tests show that the left lobe of the liver has grown as expected.
"I feel great," she said.
Lavender wished physicians paid more attention to their abnormal ALP, which had been increasing over the years.
"Nobody saw this as a canary in the coal mine," she said.
Her experience is a reminder that minimally invasive surgery is not necessarily uncomplicated or risk-free.
"You, I should not think that nothing can go wrong," she said.
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