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Last Updated

08 Nov 2002

Source: New York Times, May 7, 2002.

For Anthrax Survivors, a Halting, Painful Recovery


WINCHESTER, Va. -- When he was laid up in the intensive care unit of the Winchester Medical Center with intravenous tubes sticking out at every angle, bleeding ulcers gnawing at his gut and the lymph nodes in his chest swollen up like cherry tomatoes, David Hose (case 20) believed that anthrax would surely kill him.

When he left the hospital in a wheelchair 16 days later, Mr. Hose expected that certainly within a few months he would be back to normal, or at least well enough to return to his job supervising the distribution of diplomatic mail at a State Department center in Sterling.

Reality, for Mr. Hose and most of the tiny corps of survivors of inhalation anthrax, has been somewhere in between. Of the 11 people who came down with the deadliest form of anthrax after germ-laced letters were sent through the mail in October, six survived (cases 7, 11, 13, 14, 17, and 20). Of those, one is well enough to return to work, even though the typical recovery period for a serious infection is three to six months. The others are caught in the limbo of recovery, grateful to be alive but wondering whether the aftereffects, both physical and psychological, will ever subside.

Some have nightmares. One has begun seeing a psychiatrist to cope with flashbacks that transport him, without warning, back to intensive care. Others complain that they are tired, short of breath and plagued by losses of short-term memory, symptoms that puzzle their doctors, as well as government experts.

"It's like we are going through an accelerated aging process," said Norma Jean Wallace (case 11), a postal worker who became infected in Hamilton, N.J.  "I guess I have grown to accept it as a way of life."

If scientists learned anything last fall, it was just how little they knew about the germ and the disease it causes. Seven months later, the survivors are reinforcing that lesson. Before the attacks, just 18 cases of inhalation anthrax had been reported in the United States in the last 100 years, and nearly all of the victims died.

Mr. Hose, Ms. Wallace and the others, by contrast, offer a whole new window on those who catch the deadly disease -- and live. Having rewritten the book on anthrax treatment, they may well write the first book on anthrax recovery. For now, though, the pages are mostly blank.

"There are more questions than there are answers," said Dr. Arthur M. Friedlander, an anthrax expert at the Army biological defense laboratory at Fort Detrick, Md., who has met with the six. "We know only about this disease historically, for the most part, up until the recent tragic events. So this represents an opportunity to learn."

Now that the survivors are past the six-month mark by which they would have been expected to recover from serious infections, the federal Centers for Disease Control and Prevention, which has been collecting their blood for research, is contemplating more elaborate studies.

"We are sort of at the cusp," its chief anthrax expert, Dr. Bradley Perkins, said. "As we get further out from the original infection and these individuals do not return to their normal activities, that is going to be of great concern to us. It will be a clear indication that we need to pursue all avenues to find out what's going on."

Mr. Hose (case 20), a strapping 59-year-old, said he woke up feeling weary most mornings and took naps most afternoons. Once he recalled the arcana of international postal codes with ease. Now he finds himself searching, midsentence, for his thoughts.

His weeks are circumscribed by return trips to the hospital every Monday, Wednesday and Friday for exercises to improve his endurance. When he started in November, he spent three minutes on each machine. Today he is up to six. The color in his cheeks, once ashen, has returned to pink. But his respiratory therapist, Laurie Giangola, said, "It's going to be a long road."

There are several possible explanations for the lingering symptoms, Dr. Perkins said. One holds that toxins released by the bacteria have damaged the cells and tissues in ways that scientists do not fully understand. The side effects from long-term use of antibiotics may play a role. Or maybe the convalescence is simply longer than anyone thought.

Then there is the stress of having been involved in a terrorist attack. Besides feeling anxious, several survivors have become deeply suspicious of the government. Ms. Wallace is convinced that federal authorities know who carried out the anthrax attacks -- a government scientist, she conjectured in a theory rooted in unconfirmed news reports -- but are "protecting that person for some reason."

Mr. Hose is convinced that government scientists know more than they let on about the dangers of anthrax infection. "I'm sure they know how much it can really do to you," he said. "But they're not letting it out."

Such sentiments are hardly surprising, experts said, in view of the circumstances.

"The whole issue of having been attacked cannot be underestimated," says Dr. Jonathan Rosenthal, a specialist in infectious diseases at the Mid-Atlantic Permanente Medical Group who cares for two survivors. "These patients were very much aware that someone tried to assassinate them, and there is an enormous amount of anxiety and fear about that."

One of those patients is Leroy Richmond, 57 (case 14), a postal worker who contracted anthrax while cleaning near a contaminated mail-sorting machine in Washington. Two co-workers died (cases 15 and 16), and had he not been aggressive in demanding treatment, Mr. Richmond, too, would probably be dead. So not a day goes by that he does not count his blessings.

Still, there are things that he misses. On a recent afternoon, Mr. Richmond's young son Quentin was riding his bicycle outside their house in Stafford.

"I don't have the energy to do that," Mr. Richmond said. "I can't go swimming. I can't do the soccer things he wants me to do. I don't know what's happening inside my body. I don't think the doctors know."

Ernesto Blanco, 74 (case 7), is the sole survivor who has been well enough to return to work. An employee of American Media Inc. in Boca Raton, Fla., publisher of supermarket newspapers, Mr. Blanco said he woke up early in the morning to jog around the block with his dogs, in an effort to keep himself fit. He went back to work at the end of February, but not to the company mailroom, where employees are wearing masks to guard against biological attacks.

"Right now," Mr. Blanco said, "I am just in the stockroom doing light work."

At the Centers for Disease Control in Atlanta, scientists have learned a good deal about anthrax just from studying the blood of Mr. Blanco and the others. They were surprised to discover, for example, that patients with inhalation anthrax, in which spores are inhaled into the lungs, produce a much stronger immune response than those infected with the cutaneous, or skin, form of the disease.

"The cutaneous form of anthrax," Dr. Perkins said, "is a very substantial skin infection, and we would have expected a similar immune response."

The specimens have also helped the agency verify that the blood test that it used to diagnose anthrax was reliable. Dr. Perkins said the government hoped to use the survivors' blood to help develop an improved vaccine.

Understanding the lingering symptoms, however, will be a challenge, experts said. Because there are so few survivors, it will be difficult to draw conclusions and establish patterns.

Nonetheless, Dr. Thomas V. Inglesby, deputy director of the Johns Hopkins Center for Civilian Biodefense Strategies, said it was essential for scientists to try -- not only to ease the patients' suffering, but also to improve the public health response to a biological attack.

"What is it about their infection, their hospitalization, their immune responses?" Dr. Inglesby asked. "What about these things made them survivors?"

That is a question that the survivors still ask themselves.