The long and difficult medical saga of Ilana Lavine is a cautionary tale about the dangers of parasitic invaders and the damage they can wreak.
“People ask me why I got a liver transplant. ‘Do you have a couple of hours?’ I tell them. ‘No, wait! Do you have a couple of days?’”
— Ilana Lavine
It is a warm morning in August 2017, and I am sitting with my long-time patient Ilana Lavine in her home in Woodland Hills, California. The living room is filled with feminine touches — a bronze “Contessa” with bustle, umbrella and wide-brimmed hat, a “Hello, Gorgeous” pillow, a candy dish bought in Hungary to replace some original Meissen porcelain lost in the Northridge earthquake. As usual, the lively, stylish Ilana is plying me with food. “Have you already eaten breakfast? Are you sure you don’t want an iced coffee? A muffin? It won’t take a minute.”
“Thanks, but no thanks,” I reply. “I need to drive to Westwood. But first, let’s get those X-rays.”
Later that day, after carting three dog-eared jackets to the Faculty Reading Room at Ronald Reagan UCLA Medical Center, I meet Barbara Kadell, MD (RES ’68). “I know this case. It’s in my box of teaching slides!” exclaims UCLA’s chief of abdominal radiology. Peering through round, red glasses at a computed tomography (CT) scan from 1995, Dr. Kadell quickly notes its findings. “Here we see she has this large, calcified lesion in the right lobe of the liver and some smaller ones in the left,” she says. “The big lesion looks cystic because it’s low density. It also has cysts inside the cyst that are lined up around the edge. This is classic for Echinococcus.”
How easy it is now to name Ilana’s invader, I later muse, recalling my patient’s long, difficult journey from parasitic infection to diagnosis to lifesaving treatment. At the same time, here in Los Angeles, we now know that exotic parasites lying in wait are not as rare one might think.
ILANA APTER LAVINE WAS BORN IN THE PORT CITY OF HAIFA, in northern Israel, before the establishment of the state. Her father Misha came to Palestine from Latvia as a “young pioneer.” Her mother Charlotte, the daughter of bookbinders, left Berlin, Germany, in 1938, after Kristallnacht. They met and married. Then came Ilana, a beloved only child whose earliest memories are of a carefree life on a sunny Mediterranean plain. She particularly remembers the large open fields where she often played with a neighbor’s dog. “Oh, I loved that dog — I think it was a German shepherd,” she tells me. “I throw the ball, he goes to the back of our house where there is land, cows, sheep. It was not hygienic, of course. And here I am throwing the ball over and over. ‘Aw, come on! Give it back!’ I say. So maybe I sucked my thumb or my hands went to my mouth, and that’s how I first got sick.”
That dog is a clue, if not the actual culprit that ferried the parasite that pummeled Ilana when she was only 4 years old. “When did you know for sureyou had this unusual illness?” I asked my patient this
past summer. “After I grew up,” she says, “because my parents told me. But I remember as a child wondering why I couldn’t live in our house. It seemed like [I was exiled] forever. Three times a day, the nurse said ‘Cough!’ and I would cough. I also remember my mother crying because she needed money to keep me in the hospital. One day she sat in front of the hospital and sold her pearls. The doctors told my parents the illness would probably kill me, because I lost strength, stopped eating, just sat with this broken doll.
“Finally, my father contacted an Egyptian doctor and asked, ‘Don’t you know how we can get this out of her?’ And he said: ‘You know, there is one thing we can do.’ Then he shot formalin into the cysts in my liver and lung. All of a sudden I said to my mother, ‘I’m hungry! I want something to eat!’ Soon, I was in the newspaper. They called me a miracle child. ‘She’s going to kindergarten [the newspaper said]. She’s going to be a healthy girl.’”
FAST FORWARD 15 YEARS. Fearing that Ilana would join the Israeli Army and endanger her health, her parents sent her to England. One year later, the family reunited in New York, and Ilana started to work at a toy company in Queens. Then came the wintry night when she left her new pair of fur-lined gloves in a dress store. The manager, Barry Lavine, felt sure that Ilana would return, and the rest, as they say, is history. The following fall, the two were married; six years later, they settled in Los Angeles.
For the next two decades, “We had nothing but good times,” Barry recalls. “We had healthy kids, knock wood. We were healthy. So there was no cloud of worry except about jobs and money, the normal things.” That was so until the mid-1980s, when Ilana began to suffer mysterious, painful attacks.
“I was so doubled over,” Ilana says. “I was lucky I didn’t tip over. I didn’t know what it was. I went to a local hospital, and everyone said cancer, cancer, cancer. What else can it be?”
It proved not to be cancer. “I had pancreatitis from scarring,” she continues. Her doctors sent her to UCLA for further evaluation and treatment. There, she underwent another abdominal cyst procedure, and she met with parasitologist Jerrold Turner, MD. One glance at Ilana’s X-rays was all Dr. Turner needed. “He recognized it like that!” Barry recalls. “The next thing, he asks, ‘Are your parents alive?’” Ilana said yes, her father was alive, “and he says, ‘I want to talk to him.’ That’s when we finally heard the story.”
ILANA’S HITCHHIKER, ECHINOCOCCUS GRANULOSUS, IS A TAPEWORM OF DOGS. To canines, it poses no serious threat. But the invisible ova of the worm are far more menacing. Once passed by dogs and swallowed by humans or sheep, the tiny eggs spawn bleb-like larvae that can eventually grow as big as a fist. On top of that, the cysts’ interior lining continues to bud. The end result? Cysts within cysts, to paraphrase Dr. Kadell.
Long before the imaging power of CT and magnetic resonance scans, these complex, fluid-filled sacs also were called “hydatids,” from the Greek root for water. The condition itself is ancient, mentioned both in the Talmud and the writings of Hippocrates. Even today, few places where humans, dogs and sheep co-mingle are completely hydatid-free.
At least it’s not cancer, some might say. Yes and no. To modern parasitologists, hydatids still inspire fear and gritty respect. That’s because, much like a scene from a ’50s horror movie, puncturing and spilling a cyst can plant dozens more larvae in the same patient. Now picture someone with an occult hydatid in her liver who slams on her brakes, hits the steering wheel and ruptures her cyst capsule. Leaking parasite proteins can also trigger a violent reaction, sometimes leading to full-blown shock, and even death.
I am an infectious diseases doctor and first encountered echinococcosis-AKA-hydatid disease during a stint of training in London. Back then, most of the afflicted at our Hospital for Tropical Diseases, a crumbling, Dickensian sickbay, were from Africa. But a few years later, when working as the sole infectious diseases specialist at a small county hospital in the San Fernando Valley, I met immigrants from other places around the world who were harboring the same multiseptate sacs. Then, in 1995, just before Ilana Lavine faced her medical Waterloo, three colleagues and I published a paper entitled “Imported Echinococcosis in Southern California” in The American Journal of Tropical Medicine and Hygiene. In it, we described almost 30 sufferers seen at two Los Angeles teaching hospitals over the preceding decade. How many more lurked in the shadows, I wondered at the time.
The truth is, a large number of the world’s roughly 2 million Echinococcus-infected patients depart this life with silent, painless cysts that never placed them in peril. But that wasn’t true for Ilana Lavine. In January 1996, her hand was forced. It was time for another surgery, this time on the liver itself.
THE ORIGINAL PLAN — TO REMOVE OBVIOUSLY DISEASED PORTIONS of Ilana’s organ and then allow her to heal — was both simple and hard. Twenty-two years later, Ronald Busuttil, MD (RES ’77), still can recount specific details. “She looked very good, but it was a challenging operation because her liver was down to here,” Dr. Busuttil, who today is William P. Longmire, Jr. Chair in Surgery, told me, gesturing toward his iliac crest. “Unlike polycystic disease, where we open cysts and decompress, with an echinococcal cyst, if we open and rupture one, we spread it everywhere, or the patient goes into shock. I do remember that she had a huge, huge liver, and the only part that was not really affected was segment 2/3. My hypothesis was that the rest of her liver was not very functional because it was completely involved with all these cysts.”
Ilana and her husband prepared themselves for the surgery to come. The learning curve was steep, Barry recalls. “In the beginning, I didn’t even know how to spell the name for what she had,” he says. “I went to the medical library, and there I’d read a chapter, and then a book.” Their desire to learn as much as they could about Ilana’s disease impressed Dr. Busuttil. “I’d go to their room to talk to them, and they’d already have read all about it,” he says.
On the day of the surgery, Dr. Busuttil performed a major liver resection and rerouted Ilana’s biliary tract. But the post-op saga was just beginning as Ilana quickly descended into liver failure. “I knew I was very sick because I had pneumonia,” Ilana says. “And I couldn’t open my eyes.” “She was getting loopy, half-in, half-out (of consciousness),” Barry adds. “And her color started to change. Plus, there was her weight.” Before the surgery, Ilana weighed 113 pounds; two weeks later, her weight was in the 150s. “It was mainly fluid,” Barry says. “You could see it in her legs.”
The need to perform a transplant was evident. “She was encephalopathic” — her mental state was dramatically altered — “and she was significantly jaundiced,” Dr. Busuttil recalls. “She had an elevated INR [an abnormal lab result due to insufficient clotting factors]. We listed her right away as Status 1-A,” the highest priority level.
On January 28, 1996 — Super Bowl Sunday — Barry received a call; an organ had been found. But Ilana still was floating in and out of lucidity. “Just before the transplant, a psychiatrist came to my bed and said, ‘I need to ask you some questions.’ I said to myself, ‘Transplant? What transplant?’ I didn’t know how sick I was. ‘Maybe tomorrow,’ I said. ‘Now, can you just leave? I’m not feeling very well.’”
Later, with her family sitting at her bedside, her children asked, “‘Are you sure you want to get the transplant now? Maybe you’ll get better.’ This was hard stuff. But I said, ‘I’m a vegetable. It’s either this or I’m gone. I can’t live my life like this.’ They brought the paper, I signed it, and within 40 minutes they put me on the gurney — off I went.”
The surgery went well, and “afterward, in the ICU, I opened my eyes, and you know what I did? I half sat up and I went like this,” Ilana says, grinning and giving a triumphant thumbs-up with both hands. “I made it!”
ECHINOCOCCUS GRANULOSUS IS JUST ONE OF SEVERAL STOWAWAYS that can silently hide within a person’s body for decades before wreaking havoc. My infectious diseases colleagues at UCLA and I have treated exotic invaders in people who, before falling ill, never imagined they were carrying a lethal passenger.
Knowledge of these invaders and keen, geographic instincts are necessary to diagnose them. One test can serve as a useful tip-off to certain stowaways. An excess of eosinophils — a unique class of white blood cell stuffed with fuchsia granules — often is found in people with disorders ranging from allergies to cancer, but also in patients with migrating worms. But it takes an astute practitioner to add “worms” to his or her list of possible ailments.
UCLA hematologist Michael Rosove, MD ’73 (RES ’76, FEL ’79), is one such practitioner. More than 40 years ago, Dr. Rosove first learned about Strongyloides, a tiny worm with an out-sized capacity to burgeon and kill, when reading a case report. “It described a patient with acute leukemia who ended up dying from a massive infection that was completely unsuspected. After I read it,” he recalls, “I decided then and there that I would never forget this.”
Over years of practice, Dr. Rosove has diagnosed Strongyloides in half-a-dozen patients with unexplained eosinophilia. His most memorable case is that of a 70-year-old woman who spent much of her childhood going barefoot — not overseas, but in the rural American South — and then suffered persistent inflammation in her intestines and lungs. Fortunately, her immune system was strong, which is why she prevailed for so long before she finally received curative anti-Strongyloides treatment.
By coincidence, Dr. Rosove and I both grew up near UCLA, and we even attended the same junior high. As a result, we can easily summon memories of a much different city. “Today, Los Angeles has become extraordinarily diverse,” he tells me over lunch. “Some people are from other parts of the country, some are from other countries altogether. It’s really endless what physicians in L.A. need to know about different infectious diseases.”
Pulmonologist Michael Roth, MD ’83 (RES ’86, FEL ’89), echoed the same opinion while sharing another story. “Probably four years ago, I saw a Korean-American patient with recurrent pneumonia, bronchiectasis [scarred, irregular airways] and a lung nodule. His original doctors were concerned about cancer but couldn’t make the diagnosis. What no one had asked was, why was his eosinophil count 35-to-40 percent? This person also had Strongyloides.
“Sometimes you just have to pay close enough attention to subtle features to say that it doesn’t make sense,” Dr. Roth says. “Something else must be going on.”
AFTER HER TRANSPLANT, ALL WENT WELL FOR ILANA FOR ABOUT TWO YEARS. Then she developed right-sided chest pain — a pleural effusion and recurrent pneumonia. Additional tests showed a fluid-filled mass in her right lung, an air-filled cyst in her left, plus many more dots and blots. Once again, echinococcosis had reared its ugly head.
That’s when I met Ilana. Fortunately, I had something to offer: an excellent anti-parasitic drug called albendazole. She’s been taking it ever since, while continuing to be followed by multiple specialists and her surgeon, Dr. Busuttil, who keeps a beautiful photograph in his office of Ilana celebrating the 20th anniversary of her transplant. It’s a perfect picture of a woman who triumphed in her 50-year battle against a cunning parasite.
Together, Ilana and Barry have endured her painful and dangerous ordeal. After her surgeries, he cared for her with immense focus and tenderness. “You need a partner who really cares,” Ilana says. “When I came home from the hospital, there were tubes, tubes, tubes.” Every day, Barry would help her to remove and clean them. Ilana’s friends took notice of his devotion. “‘Your husband is amazing,’ they used to say,” she told me in her charming staccato mix of New York and Israeli accents. “‘There isn’t another Barry.’ And they were right!”
“There’s no question we both went through some real hectic moments,” Barry says. “I showed strength when I was with her, but she’s the real power. She’s the strength.”
Dr. Claire Panosian Dunavan is clinical professor of medicine emeritus (recalled) in the David Geffen School of Medicine at UCLA and a medical journalist. Her writing has been published in the Los Angeles Times, The New York Times, Washington Post, Discover magazine and Scientific American, among others. She served as president of the American Society of Tropical Medicine and Hygiene in 2008.