Rhode Island News 01:00 AM EDT on Sunday, September 20, 2009 FELICE J. FREYER Journal Medical Writer
Jana Hesser participates in the Save the Bay Swim from Newport to Jamestown in August. Less than a year earlier she was paralyzed by an unusually severe case of West Nile virus and spent two months in the hospital. The Providence Journal / John Freidah Before she got the fever, before her speech slowed and her mind fogged, before her legs weakened and the EMTs carried her from her second-floor condo, Jana Hesser was bitten by a mosquito. She doesn’t remember the bite. But later she thought she could pinpoint when it happened –– an August evening in 2008 when she’d gone for a walk with her sister in the Swan Point Cemetery, in Providence.
A colleague in the state Health Department told her that mosquitoes trapped in late August at that very cemetery had tested positive for West Nile virus. Jana Hesser’s case was reported in the newspaper, in the bland, anonymous way of such reports: “Rhode Island’s first human case of West Nile virus this year was confirmed last week, in a person with a weakened immune system.” But if you had met her then, “weakened” would not be the word you would use to describe this athletic woman in her mid-60s, an avid walker and swimmer, a Ph.D. with a demanding job supervising the Health Department’s health and behavioral surveys. True, her immune system had recently taken a beating: She suffered from lymphoma, a cancer of the body’s infection-fighting lymph system. In July 2008 she had completed a successful round of chemotherapy.
By August, though, the worst was over. She’d recovered from the chemo and her cancer was in remission. Her doctor says Hesser was “in very robust health” at that time, the day she and her younger sister decided to take a walk in the woodsy cemetery off Blackstone Boulevard. If Swan Point is indeed where the fateful mosquito bite occurred, the sisters’ evening stroll was the start of a remarkable medical journey. West Nile Virus first arrived in North America in 1999, somehow making its way to New York City from the Middle East. The mosquito-borne disease passed between mosquitoes and birds. Mosquitoes bit birds and infected them; other mosquitoes bit the infected birds, and some of those mosquitoes also bit people, injecting the virus into the bloodstream. In 2000, West Nile was found in eight northeastern states. By 2002, it had reached the West Coast. As West Nile made its way across the continent, it turned out to be a fairly benign infection, never causing widespread illness. Four out of five infected people don’t even get sick.
Among the 20 percent who do feel ill, the vast majority suffer from West Nile fever, a syndrome of fever, headache, muscle pain, rash, fatigue and sometimes nausea that fades away in a few days to a few weeks. But West Nile also showed that it could get nasty. In about 1 in 150 cases, the virus invades the nervous system, inflaming the brain or the membranes that surround it. The result is meningitis or encephalitis, or both, bringing high fever, headache, neck stiffness, stupor, disorientation, coma and tremors. Usually such patients are old or have weakened immune systems. Then, in 2002, reports emerged of West Nile taking an especially scary form. Six people in Mississippi and Louisiana lost the use of one or more limbs, a paralysis that looked exactly like polio. These patients were not all old and sickly. Five of the six were under 60; three, like Jana Hesser, were in good health before the wrong mosquito found them. Hesser’s first symptoms came in mid-September, 2008, near the end of her visit to the Dana-Farber Cancer Institute, in Boston. She had gone there to have stem cells collected from her blood in preparation for a stem-cell transplant. Although her cancer was in remission, a stem-cell transplant could reduce t he likelihood that it would come back. It took three days to On the third day, Hesser started running a fever. She was with her older sister, Martha Maletta, visiting from Shrewsbury, Mass., and Martha’s husband, Lon. They brought her to Miriam Hospital, where doctors prescribed antibiotics for what they thought was almost surely a bacterial infection. They sent her home with instructions to call, if the fever didn’t break.
Hesser’s fever persisted over the next several days, followed by more troubling symptoms. When she spoke, she had trouble finding the words. Her legs grew weak, to the point that she couldn’t get out of bed. An ambulance was summoned. Hesser remembers staring at the Miriam Hospital ceiling panels as she rolled in on a stretcher. The rest of the next week is a blank. As Hesser was being admitted, her oncologist, Dr. Anthony E. Mega, received a phone call from Dana-Farber. In stem-cell transplants, the patient’s cells are routinely tested for every conceivable infectious agent, because the transplant procedure opens the door for any lurking infections to attack. So Hesser’s cells had been thoroughly tested. And the tests had found something. “You’re not going to believe this,” Mega recalls the Dana-Farber doctor saying. Hesser had West Nile virus. Mega was stunned: “It wasn’t even close to being on my list of what was happening.” Hesser had received two transfusions as part of the stem-cell collection process.
West Nile can be transmitted through blood donations. But all the donors were traced and found to be free of West Nile. However unlikely it seemed, Hesser’s illness could only have originated with an unlucky mosquito bite. In the hospital, Hesser got weaker and slow to respond. “We were watching her deteriorate before our eyes,” says Andrea Schindler, a nurse practitioner in Miriam’s cancer unit who had grown attached to Hesser. “It was scary. It was very scary.” Fearing Hesser might lose the ability to breathe, Mega transferred her to the intensive care unit so she could be quickly put on a ventilator. A tube was inserted through her nose to feed her. Her two sisters worked out a plan to be with her all the time. Martha and Lon Maletta, who are retired and live less than an hour away, came on weekdays. The younger sister, Marilyn Saulle, and her husband, Roger, who work during the week and live three hours away in Yonkers, N.Y., visited on weekends. Saulle arrived on the weekend that Hesser was in the ICU. She was shocked to see her sister attached to tubes and monitors, immobilized, trembling incessantly, and barely able to respond. “It’s like she was in there,” Saulle recalls, “but she was way in there.” Hesser’s son, Jordan Pavlides, came by every day and stayed for a couple of hours. He remained resolutely upbeat. Pavlides, now 25, knew his mother as healthy and strong; it was unimaginable to him that she wouldn’t recover. But there were days in the intensive care unit that gave him pause. He remembers her following him with her eyes, unable to speak. The best she could do was slightly raise her eyebrows.
MEANWHILE, the medical team worked to make sense of what was happening to her. No one had ever seen a case like this. Schindler, the nurse practitioner, went online to learn more, and ended up talking by phone with one of the leading experts in nervous-system infections, Dr. James J. Sejvar of the U.S. Centers for Disease Control and Prevention. Sejvar suggested treating Hesser with immunoglobulin, a substance that fires up the immune system. Hesser did get the immunoglobulin, but it was hard to tell if it made any difference. As with most viruses, there was no other treatment. Schindler and Mega feared she would die, as have many others with such severe illness. They also worried she would survive, but never be the same person again. Still, Hesser continued to breathe on her own, and she was transferred out of the ICU. Slowly, she began to come back. Her memory tunes in again around this time. She remembers crowstudents hovering over her with amazement and concern. She remembers a doctor asking her a question and the excruciatingly long time it took her to organize the nerves and muscles involved in saying “yes.” Hesser’s sisters made use of CaringBridge.com, a social networking Web site for cancer patients. They posted updates on her condition, and friends from throughout the country replied with words of encouragement.
Over the next few days Hesser gradually emerged, sitting up, finding more words. On Oct. 10, Hesser was transferred to the rehabilitation unit at Memorial Hospital of Rhode Island, in Pawtucket. Although she’d undergone physical therapy at the Miriam, she could not walk and had a persistent tremor in her hands. No one knew whether she would ever walk again. The physical therapists helped Hesser onto her feet, and with a walker she took one slow step after another. Then, a few days after arriving at Memorial, Hesser’s legs gave out. She collapsed: weakness had progressed to paralysis. Dr. Erica Szabados, a neurologist, conducted a battery of tests and found Hesser had suffered nerve loss in her thighs and hips –– in a pattern that was “consistent with West Nile virus.” But it was a very unusual manifestation of the illness. Hesser had progressed from West Nile fever, to meningitis and encephalitis, and then ––weeks later –– to paralysis. Usually, when West Nile attacks the nervous system, the symptoms appear within the first few days. Szabados plans to report Hesser’s case in a medical journal. Most patients with West Nile paralysis suffer lasting effects; only a third return to their previous level of functioning. But Hesser was determined to walk again. “There was a part of me,” she said later, “that expected to get well because I always have.” On Oct. 28, she was able to stand up, clutching the walker.
On Oct. 30, she took three steps. Eventually she made it 40 feet. On Nov. 19, Hesser went home, in a wheelchair, carried up the stairs just as she had been carried down two months earlier. With her sisters taking turns staying with her, she continued to work with physical therapists, and continued to build strength. The big challenge was getting down the stairs. She practiced a step at a time, her son in front of her in case she fell, a therapist behind her holding a safety belt. On Christmas Eve, Hesser finally left her apartment on her own two feet. Her son held onto her belt as she descended. Using a walker, she went to a party. From there, Hesser charged forward. January: returned to work for two hours a day, using a walker; resumed swimming. March: back to work full-time, using two canes. April: attended organizational meeting for 100-mile bike ride, with one cane. June: first bike ride, 24 miles. August: Save the Bay swim. Yes, you read that right. Hesser participated in the annual swim across Narragansett Bay this year, her fifth time. She covered the 1.7 miles in one hour and 10 minutes, one of her best times ever. Next Sunday, Sept. 26 –– exactly one year after lying motionless in the Miriam ICU –– she will ride 100 miles in the Seacoast Century, raising money for the Leukemia and Lymphoma Society. Today, Hesser has returned to her previous life, with a few twists. She can walk without support, but –– despite her ability to bike and swim –– she can’t walk as fast as she’d like. She can perform her job competently, but her short-term memory sometimes fails on the less-important matters. HER LYMPHOMA remains in complete remission. In fact, Hesser believes that the West Nile infection may have wiped it out. A Dana-Farber doctor told her that an overwhelming infection can sometimes put the immune system in hyperdrive, killing a cancer. Mega, her oncologist, calls that “a relatively far-fetched theory.” He continues to monitor Hesser for relapse. If the lymphoma does return, he’s confident she’ll respond w ell to treatment. For now, though, the bone marrow transeems too risky, as long as she’s still in remission.
Now 65, Hesser plans to retire in December, hoping to travel and visit friends around the country. Asked what she took away from the experience, Hesser names several things: her deepened appreciation for her sisters and son, without whom she doesn’t think she would have survived; her newfound admiration for the competence and compassion of medical professionals, especially nurses; a sense of “nothing bothers me anymore.” But the biggest revelation concerns all the friends who wrote and visited. She really didn’t know so many people cared. “At some level you know you have friends, but sometimes you feel like you don’t,” Hesser says. “I will never feel alone again.” This is the part that brings her to tears. “I mean, hundreds of people.” Everyone involved with Hesser’s extraordinary illness and recovery took something away from it. Mega calls it an example of teamwork in medicine and a testament to the human spirit. Her sisters talk about how Hesser’s willpower, and physical strength from a lifetime of healthy living, got her through it. And nearly everyone mentions mosquitoes. How they use repellent now. How they see the annoying little insects in a new light. Just last week, a batch of mosquitoes in Pawtucket tested positive for West Nile virus. No human cases have been reported this year, but mosquitoes will remain active until the first hard frost. “People think, ‘oh it’s a bug bite–– whatever,’ ” says Szabados, the Memorial Hospital neurologist. “But it can have consequences.” firstname.lastname@example.org
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