Medical mystery: Nurse who couldn’t stop scratching feared she was facing an organ transplant

In January 2010, while on the last night of a cruise around the Panama Canal, Leslie Lavender experienced a severe gallbladder attack. She had suffered attacks before, but this incident was much worse. The sharp abdominal pain left her doubled over for hours.

“I come from a long line of women who have ended up losing their gallbladders,” she said, referring to her mother and grandmother.

At home in Northern Kentucky, where she and her husband, Michael, an obstetrician-gynecologist, were then living, Lavender underwent an ultrasound, which revealed a peanut-sized gallstone blocking her gallbladder. The pear-shaped organ sits beneath the liver and stores bile, which aids in the digestion of fat.

Soon afterward Lavender underwent a laparoscopic cholecystectomy, a minimally invasive surgery that involves extracting the organ through small incisions rather than a single large one. Laparoscopic surgery promises less pain and a faster recovery than the conventional open procedure.

More than 90 percent of all gallbladder removal operations are now performed laparoscopically, but this method may limit the surgeon’s ability to see and can result in injury to the bile ducts — a potentially fatal mistake if not treated promptly.

Lavender was discharged after spending a night in the hospital. But a week later, she began vomiting and developed intense abdominal pain.

“I’m going to die,” she told a doctor who sent her for a CT scan, which revealed pools of fluid in her abdomen. Doctors discovered a bile leak and admitted her to wash out the caustic bile and fix the problem.

Three days after she was discharged for the second time, Lavender was back in the hospital. Doctors performed a procedure to place a temporary drain, which was removed after six weeks.

After the third operation, the surgeon told Lavender that she had an unusual anatomical variation called an accessory bile duct, which was closed off to prevent further leaks.

The next few months were rocky. Lavender developed a debilitating infection caused by clostridium difficile bacteria, which can result from the use of antibiotics. She slowly recovered and later that year moved with her husband 1,100 miles north to the coast of Maine.

During routine physicals, her internist in Maine noted a persistently elevated level of alkaline phosphatase (ALP). Elevated levels of ALP can indicate liver or bone problems.

“I questioned it, but nobody seemed too concerned about it,” recalled Lavender.

The itching started in March 2017, while Lavender, then 60, was in Omaha visiting her older daughter.

“It was just insane,” she said. “I ran through a list of possibilities: Do I have a rash? Hives? An allergy? What am I eating?” Nothing seemed to explain it.

And little seemed to relieve it.

“I was a mess,” she recalled. She had scratched so much that her arms and legs were crisscrossed by angry welts, which sometimes became infected.

Lavender, a retired nurse practitioner, spent more than a year seeing a variety of specialists, each of whom was mystified by the problem that was ruining Lavender’s life.

Her internist sent her to a dermatologist, who ordered extensive lab tests to rule out multiple myeloma and other cancers, as well as several autoimmune diseases that can cause intense itching.

The dermatologist gave her a steroid ointment and prescribed a large dose of oral steroids, which quelled the itching. But the ointment made Lavender’s skin so thin it began to tear.

A second dermatologist, whom she saw in January 2018, 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, who told Lavender he suspected sclerosing cholangitis, a liver disease caused by inflammation or scarring of the bile ducts.

Michael Lavender remembers the gastroenterologist telling him that his wife could be headed for liver failure and might need a transplant in four or five years.

In apparent anticipation of that possibility, he referred Lavender to Roger L. Jenkins, a liver transplant expert at Lahey Hospital & Medical Center in Burlington, Mass., a Boston suburb.

By the time she got to Lahey in June 2018, Lavender was despondent.

She was finding it increasingly difficult to live with the itching. And the idea that she might need a transplant was overwhelming.

“I told Michael, ‘I love you, but I’m not having a liver transplant,’ ” she recalled.

In preparation for her visit, Jenkins obtained her records from Kentucky and Maine.

“What you really have to do is go back in time,” he said.

After reviewing her records, the answer seemed clear, Jenkins said.

It appeared that during Lavender’s gallbladder surgery the surgeon had mistakenly sewn Lavender’s right hepatic bile duct closed, mistaking it for an accessory duct. (Hepatic ducts drain bile from the liver.) Over the years, subsequent scans and tests were repeatedly misread as showing a left and right hepatic duct, when in fact they were two branches of the left duct. Lavender’s liver was the source of the itching.

“Miraculously,” Jenkins noted, the right lobe of the organ had not atrophied as would be expected. “This is extremely unusual,” he said.

One reason the error may have gone undetected so long, Jenkins speculated, might be that Lavender’s anatomy differs from the norm in an unspecified way.

Jenkins recommended removing the right lobe of Lavender’s liver to stop the itching; the left lobe should grow to compensate for the missing portion. The other option involved extensive reconstructive surgery that Jenkins said might not work.

Lavender, the surgeon wrote in his consultation note, was “in agony” from the itching and had said she “didn’t want to live” if the problem could not be fixed.

Lavender was floored — and thrilled.

“He just knew,” she said of Jenkins. “I felt that the Lord had sent me to the right place.”

The 3 1/2 hour operation, performed nine days later, went smoothly.

It took several weeks for the itching to vanish entirely and about five months before the crushing postoperative fatigue Jenkins had warned her to expect disappeared. Tests show that the left lobe of her liver has grown as expected.

“I feel great,” she said.

Lavender wishes doctors had paid more attention to her abnormal ALP, which had become increasingly elevated over the years.

“Nobody saw that as the canary in the coal mine,” she said.

Her experience, she noted, is a reminder that minimally invasive surgery does not necessarily mean uncomplicated or risk-free.

“You shouldn’t think that nothing can go wrong,” she said.