Sunday, July 4, 2010

'For Sept. 11's burn victims, a slow recovery,' LA Times

The Los Angeles Times

'Advances in treatment helped them survive, but two years later, some are still struggling,'

October 27, 2003|By Roni Rabin, Newsday

Harry Waizer talks in a whisper about getting back to work. His vocal cords were charred in the terrorist attacks of Sept. 11, 2001, possibly when he inhaled burning jet fuel, and now he is pondering how to put his extensive experience in corporate tax law to use, even though his voice is weak and he is distracted by pain.

For Mary Jos, the ability to concentrate comes and goes. Her mental focus sputters when she reads, and her doctors have told her it is often the last function to be restored, as though it is the last priority for a body reeling from searing memories and third-degree burns.

Vasana Mututanont is one of the few Sept. 11 survivors with severe burns who are back at work. A Thai national who works for her government promoting investment in her homeland, she returned to work two months after the terrorist attacks, despite burns over 40% of her body and injuries to another 40%, where a thin layer of healthy skin was peeled off to graft over the burns. At first, Mututanont took her husband or daughter along to assist her on her business trips. Then she mastered the art of slathering medicinal cream on her back on her own.

For the last two years, three who survived the severe burns they suffered Sept. 11 have been engaged in what one spouse likened to a slow, unrelenting dance, a healing marathon of two steps forward, one step back: a successful graft followed by pneumonia, a joint gone stiff by morning, a scar that was healing flat starting to raise up and wrinkle.

"Burns are a very different kind of injury. They heal, heal, then regress," said Jos, 55, a gregarious, ruddy-faced woman with a quick smile. Her clear face is almost unscathed, but she still wears pressure garments that cover up her left arm and chest. "Until you grasp that back and forth is going to happen, until you understand that's the way burns operate, it's hard to accept."

Jos has been released from physical therapy three times. Each time she had to restart after regression. "You don't like it when you go backward, but at least you understand the process," she said.

Collateral damage

Advances in burn treatment over the last 25 to 30 years enable most patients to live independently, doctors say. But people who have suffered severe burns will never be able to sit in the sun, participate in strenuous sports, sleep comfortably, even perspire, because their sweat glands are gone. Some suffer pain; even more contend with relentless itching. There is collateral damage to joints and nerves.

Summer is uncomfortable, but winter is worse: The cold air feels like ice on your skin, said Mututanont, who lives in lower Manhattan. Long stretches of sleep are elusive because there is no comfortable position. And as soon one stands, the itching starts.

Not so long ago, these burn victims might not have survived, said Dr. Roger Yurt, director of the Hearst Burn Center at New York Weill Cornell Center, where 18 of the most severely burned patients from the World Trade Center were taken. Eleven lived.

The rule of thumb used to be, he said, "add the percent [of body surface] burned to the age to get mortality. So a 50-year-old with a 50% burn had almost 100% [likelihood of] mortality.... Now we're talking about expecting the majority of patients with 70% burns to survive."

Besides pain, burn survivors must cope with permanent disfigurement and psychological trauma. For survivors of Sept. 11, the trauma is compounded by the magnitude of the tragedy and the loss of colleagues. Waizer worked at Cantor Fitzgerald, which lost 658 of its 1,050 employees; Jos was with the New York state tax department, which lost 39 workers.

They are acutely aware of how lucky they are. "There are things I can and cannot do, but it doesn't in any way diminish my recognition of how fortunate I am," said Waizer, 52, of Scarsdale, N.Y., who was an inpatient for five months and two days and who has had eight or maybe nine surgical procedures -- he isn't sure. "If I had to say one thing, I'd say, 'Be grateful for what you have.' "

Pain in the 'tank room'

A major advance in the treatment of burn patients involves the immediate process of resuscitating them from shock: replacing enormous amounts of fluid lost, putting them on respirators and closely monitoring them.

As soon as patients are stable, they are taken for debridement (removal of tissue) in the "tank room," named after the tubs or tanks used years ago to clean patients. Patients are placed on stainless-steel beds, scrubbed to remove dead skin and prevent infection, then hosed down. It is a painful process, repeated twice daily. "Taking Demerol doesn't stop the pain, it just stops you from caring," said Jos, who lives in Manhattan and on Long Island.

Within days, patients are in the operating room for more removal of dead skin, replacing it with a graft from the patient or, if there's not enough unburned surface, skin from a skin bank or an artificial skin that enables the inner dermis to regrow under a layer of rubber that will eventually be removed. "Typically we take ten-thousandths-of-an-inch-thick outer layer of healthy skin, and that process creates a second-degree burn," Yurt said. "What I usually tell patients is they'll have more pain after than before."

The donor site can take 14 days to heal, he said. The grafted area is immobilized for three to five days. Once it is healed, an intense period of rehabilitation starts to promote flexibility in the grafted area.

Sometimes skin from the donor site is meshed; a machine doubles or triples its original size by cutting holes in it, Yurt said. But the skin that results has an unsightly, diamond-shaped pattern and is usually not used for grafts on the face or hands, he said.

Patients are released from the hospital to a rehabilitation center and then home, with four to five physical therapy sessions a week for about a year. Additional surgeries, including plastic surgeries to improve the look of earlier grafts, also may be offered.

The approach to patient care is interdisciplinary from the start, Yurt said. Physical and occupational therapists, as well as psychologists, are part of the team. Many burn survivors suffer from post-traumatic stress disorder, with flashbacks and intrusive memories.

At the Hearst Burn Center, psychologists are experimenting with a "new exposure" therapy, which uses computer virtual reality to immerse patients in a Sept. 11 scene.

The aim is to let them reexperience that day in a safe, controlled environment so they can reprocess traumatic memories, possibly laying down new memories and becoming desensitized to events of that day.

Unlike other trauma victims, burn survivors cannot avoid reminders of their experience because it is etched into their skin. "When I look at myself in the mirror," Mututanont said, "it's like a patchwork of a not-so-good quilt." She likes working over the phone, she said, because it helps her forget her injuries.

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