Island Practice (21 page)

Whelan rushed Eva to the hospital, and Lepore was called. He instantly recognized a problem many physicians would never have guessed:
toe-tourniquet syndrome. The syndrome happens when hair, often from the mother, gets wrapped around the baby’s toes. A strand of hair is so thin it can slip onto a baby’s foot unnoticed. A baby kicking and moving around inside pajamas can cause the hairs to pull tighter and tighter, cutting off circulation. The toes swell, often concealing the hair entirely.

Medical literature says that toe-tourniquet syndrome is not uncommon, especially because hormones cause women to lose more hair post-pregnancy, but that many doctors don’t know to look for it. Unable to see the hair, some misdiagnose the condition as accidental injury or, worse, as resulting from child abuse. The actual problem can take three or four days to diagnose, and by that time toes can develop gangrene or need to be amputated.

“I’ve read sixteen parenting books, and it’s not in any of them,” notes Whelan, who runs Sustainable Nantucket, an organization advocating locally grown food.

Lepore took the screaming infant and grabbed tweezers. He spent a long time teasing and pulling at the hairs, which were strangling the three middle toes. He thought he had gotten everything, but just to be sure, he told Whelan to bring Eva back in four hours. When they returned, he decided to perform surgery to make sure to catch every last strand.

Whelan, who had only known Lepore peripherally before, knew he could be “perceived as abrasive,” so she was stunned by his commitment to her daughter’s case. He performed the surgery on the delicate toes without leaving any scarring. He checked on Eva regularly in the days after the surgery but never charged Whelan for those sessions.

“Meet you outside my office—I’ll just look at her toe,” he’d say.

“He knew I was on maternity leave, and it was going to be hard for me to afford follow-up visits.” And he knew “I was feeling like I was a bad mom.”

Several esoteric Lepore discoveries have saved more than a toe or two. Foley Vaughan, a lawyer, went to the hospital with what he described
as “the world’s worst sore throat.” Lepore was unavailable, performing surgery, so another doctor took a look and told Vaughan he had cold sores. “Go home,” the doctor said. “There’s nothing I can do for it.”

An hour later, the pain was so intense, Vaughan returned and saw Lepore. By that time, he couldn’t swallow. Within minutes, Lepore diagnosed Vaughan’s ailment as adult epiglottitis, an infection behind the tonsils that can cause fever, painful swallowing, and can easily obstruct the airways. It may have been the disease that killed George Washington.

“It’s almost impossible to diagnose,” Vaughan notes. “But a swelled-up throat can kill you. He put me in intensive care for three days. I had to sleep sitting up.”

In 2006, Elliot Norton, a fifty-six-year-old chef at the island’s Rotary restaurant who had always been healthy, came to Lepore’s office “just not feeling good,” he says. The cause and even the symptoms were unclear. He made several appointments over six weeks, and finally, because he had pain in his jaw and a slightly drooping lip, Diana Hull, Lepore’s longtime nurse, suggested Norton see a dentist. But Lepore sensed something more interesting, and threatening.

“Let’s go get a CAT scan,” he said. Hull teased him that he was going overboard, rolling her eyes and claiming that Lepore was on a wild goose chase. But Lepore had a hunch. “Something smells wrong.”

After the scan, Lepore called Norton, who met him in the parking lot behind his office. Sunlight was glaring off the piece of paper in Lepore’s hands: the scan readout, a piece of graph paper about twenty-five inches long and eight inches wide with “little lines on it,” Norton recalls.

“I found out what’s wrong,” Lepore began.

“Oh good,” Norton interjected. But Lepore looked concerned.

“You’re standing there, . . .” he said. “You should be dead.”

The scan showed Norton had an aneurysm on the right side of his brain that had ruptured, bled, and, at least temporarily, sealed itself off.
There was another aneurysm on the left side and another in the center; those hadn’t ruptured yet but could at any moment. Aneurysms are ticking time bombs; if they rupture, they can cause strokes that are often fatal. Norton had none of the classic symptoms. “Even a blind pig finds an acorn now and then,” Lepore shrugged.

Lepore rushed Norton to Boston for intracranial surgery. At the hospital, Norton overheard staff members discussing his case with tears in their eyes. He asked the neurosurgical staff “what my percentage was, and they said it was only 6 percent I was going to come out fine without brain damage.” He landed in that 6 percent.

Still, Lepore’s hunches aren’t always foolproof. Sean Kehoe, who spent his teenage years on Nantucket, was sent to the hospital as a high school junior when his abdomen suddenly turned rigid. “I couldn’t stand up or sit down,” says Kehoe, now in his late twenties. “All I could do was lie on my back because it was so hard.”

He was stretched out in the emergency room when Lepore came in and opined, “I think it’s appendicitis. If this turns out to be what I think it is, we’re not going to have time to fly you off-island. We’re not going to have time to bring in a team. I’m here, and I’ll do it myself. We’ll have you prepped and ready in two hours.”

Sean remembers quaking. “He had a look in his eye, like he wanted to see what I was made of. This made me really nervous. I think I lied about how I felt to avoid having him cut me open.”

He told Lepore, “I want to wait till the last possible moment. I’m going to talk to my mom.” Sean turned out not to have appendicitis, probably just really bad gas, so Lepore would not have operated anyway.

“Sometimes as a physician you program your thinking one way,” Lepore acknowledges. “I try not to have tunnel vision. It’s not always easy.”

Lepore sometimes seems driven by the adrenalin of discovery and remedy; the more routine aspects of doctoring don’t interest him as
much. People who work with him say he can just wander out of the office in search of something more intriguing.

“He can be incredibly frustrating to work with,” says Martina Richards, one of Lepore’s former nurses and a close friend. “The guy’s a surgeon, and primary care often is not that exciting. When somebody had a cold or a rash, he really didn’t want to deal with it. It’s boring.”

Barbara Rives has experienced both his engaged and his disengaged sides.

In Rives, a fellow runner, Lepore has detected heel spurs and stress fractures, and at one point did an MRI because he thought, incorrectly as it turned out, that she might have a cracked pelvis. Another time, he sent her for tests, suspecting that her pain was caused by bone injury. He was right—it was a spiral fracture, and if she had run on it, more damage could have resulted.

“He hasn’t always been right, but he has helped me a lot,” Rives reflects. “I would never have gone to a doctor for the things I go to him for. Otherwise I would just be walking around in aches and pains.”

But when Rives, who had experienced problems with the delivery of her first baby, wanted Lepore to deliver her second, he declined. “Please would you please do this for me?” she begged. But to Lepore, her pregnancy was simply not interesting enough.

“For a vaginal delivery, I do not have that degree of patience,” he admits. “You have to be appropriately phlegmatic. I consider it mildly bovine, like cows sitting there and chewing their cud. When you’re doing a vaginal delivery, it is set up to work, generally. There’s a certain placidity, wandering in every couple of hours to see how things are going, that I find a little disconcerting.”

He far prefers a case like that of the taxidermist who, in a manner of speaking, got stuffed himself when he slipped in the woods while rabbit hunting. “I got a stick up my ass,” the taxidermist said when he came into the hospital. It was actually a potentially devastating injury. A branch had sliced through his urethra, the tube connecting his bladder
to his genitals, and he needed surgery. “Everybody thought it was really funny—until I looked at it,” Lepore recalls.

The case of Ruth Foulkes in January 2011 gave Lepore just the right mix of skill and shock value.

“Did I tell you about the hand I cut off?” he’ll say, by way of introduction. It was only two fingers, but still: it was his first amputation of this kind, and he was proud enough of his handiwork to show off photographs he took. “Normally I may have sent this to a hand surgeon or plastic surgeon, but that was not really practical in this situation.”

Foulkes was eighty-nine and had dementia. She had squamous cell skin cancer, and although Lepore had repeatedly removed the cancerous lesions on her left hand, they kept reappearing.

When Lepore, after consulting a plastic surgeon on the mainland, said that “amputation was the way to go,” Foulkes’s daughter-in-law, Shelley, a home health nurse, felt, “It did seem extreme.” But the family had learned long ago to trust Lepore. A year earlier, during a routine physical, he had detected a heart murmur in Shelley’s husband, Mark, that turned out to be a torn mitral valve requiring surgery. When it came to removing the ring finger and pinky on her mother-in-law’s hand, Shelley knew it wasn’t Lepore’s area of expertise, but “I just figured: he knows his anatomy.”

Having the operation on-island, with family close by, undoubtedly minimized the distress Foulkes might have experienced had she instead had to go to Boston. And Lepore was at his breezy best, assuring Shelley Foulkes that her mother-in-law wouldn’t miss the two fingers because “she can throw a curveball without them.”

Alexandra McLaughlin was still having a terrible time, falling asleep and collapsing even more than usual. Practically every time she ventured outside, she would end up crumpled on the ground, sidewalk, or sand.

People’s reactions only made things worse. Rendered temporarily paralyzed and mute, McLaughlin could not tell a well-intentioned woman that she had not, in fact, gone into a diabetic coma or request that she stop trying to force a cookie down her throat. “You can tell them a hundred times, ‘I’m not a diabetic,’ but if they’re a cookie shover, that’s who they are.”

Other people would pull on her tongue, in a misguided attempt to prevent her from choking. Some would begin CPR or call 911. “When people start touching me all over, I hate that,” McLaughlin says. “I can hear people doing things to my body. I can’t make them stop. Sometimes I can maybe move a finger, but nobody ever notices. I can’t even change my breathing.”

The unsolicited activity added to her stress, prolonging the time it took to snap out of the paralytic state. And sometimes the touching became sinister; more than one strange man has fondled her or worse while she has lain immobile on the ground. “I’m the litmus test for the gentlemanliness of the community,” she observes.

Things got so bad that by 2010, “I couldn’t leave the house at all.” Trolling the Internet, she came across a condition called narcolepsy with cataplexy. Narcolepsy is a disorder causing people to sleep suddenly in short bursts, sometimes in the middle of driving, working, or talking. Cataplexy, which can accompany narcolepsy, causes sudden muscle weakness, sometimes triggered by intense emotions. Narcolepsy with cataplexy appears related to having too little of a brain neurotransmitter called hypocretin; its absence causes abnormal sleep cycles.

McLaughlin couldn’t believe how uncannily her symptoms seemed to match. What she had more than anything, she realized, was “a sleep-wake cycle cluster fuck.” She instantly called Lepore. “I am going to sound like a cuckoo,” she thought. “But Dr. Lepore, he won’t hold this against me.”

When she told him, “this reads like my personal diary,” Lepore replied, “Wow. I’ve only seen this once before.”

He sent her to a neurologist at Massachusetts General, and she waited months for results of tests, only to be called back for more. Frustrated, she visited a doctor in Westport, Connecticut, where her parents live, who administered still more tests. Both doctors said she probably had narcolepsy with cataplexy, but they couldn’t be 100 percent sure because “the test results were not textbook.” For example, when she fell asleep, it took eight minutes to enter REM sleep. Textbook is under seven minutes.

The textbook definition mattered mostly because of money. The medication considered most effective for narcolepsy with cataplexy costs tens of thousands of dollars a year, a sum that insurance companies aren’t willing to pay unless the diagnosis is ironclad. The medication is also controversial. The drug, Xyrem, is tightly regulated because its active ingredient, gamma-hydroxybutyric acid or GHB, has been used as a date rape drug.

GHB was originally developed as an anesthesia drug, and a few drops of the odorless, colorless liquid can be slipped into a drink, quickly causing someone to lose consciousness for hours and have no memory of events during that time. Although it became available as a dietary supplement, and was sold under street names including “blue nitro” and “liquid ecstasy,” the government in the 1990s warned against its use and restricted its sale. GHB can cause coma, and the Drug Enforcement Agency has linked it to at least seventy-one deaths and 5,700 overdoses.