The horrors of the asthmatic paroxysm far exceed any acute bodily pain: the sense of impending suffocation, the agonizing struggle for the breath of life are so terrible they cannot be witnessed without sharing in the sufferer's distress ... [If the asthmatic] knows anything of the nature of his complaint, he knows that his sufferings may terminate in a closing scene worse only than the present. -- Dr. Henry Salter, "Asthma: Its Pathology and Treatment" (1882)
In a photograph I've kept on or near my desk for 12 years, my brother Ryan is a small, 8-year-old boy standing outside with a mitt dangling from his left arm. A baseball hangs, blurred, in the air in front of him, suspended over his outstretched palm. Everything in the frame around him seems gigantic -- the too-big glove, the rows of pines and palm trees behind him -- but Ryan's confident grin is the center of all this wilderness and movement. A baseball player almost since he was old enough to stand, Ryan also spent his childhood as a severe asthmatic, enduring a seasonal tightening of the chest that made a precious currency of his breath, exhausted him after nights of bleary-eyed coughing and required him to consume an endless stream of pills and inhaled medicines. Yet all this somehow gave Ryan the most unlikely, serene composure. As in the picture, he always stood tall above the turbulence. He may have been at the fragile heart of a malignant universe, but when you saw that smile, you knew he was going to catch the spinning baseball.
But one night five years ago, Ryan's resilience all but vanished. In its place was a frightened 15-year-old. That afternoon had been routine -- high school baseball practice -- but he spent the night in the intensive care unit of the local children's hospital, a place he hadn't seen since spending Easter there at age 2. A sudden virus had come over him and caused a lung to collapse, but no one foresaw how his asthma would complicate this problem. Ryan would nearly die in this ICU. All told, he'd be in intensive care for almost two weeks, half of it unconscious.
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There are 17 million asthma patients in the United States, about a third of them children. The real shock, however, is that asthma-related deaths have risen 40 percent in less than 20 years. The death rate for children under 19 increased by 78 percent between 1980 and 1993, according to the Centers for Disease Control and Prevention. But the greater prevalence of asthma remains a mystery to doctors and health officials.
People who don't have the chronic disease often associate it with breathlessness, as if it were a generic condition that could be induced by a brisk run for the bus. But a full-blown asthma attack involves uncontrollable, hunched-over, red-faced coughing. Each breath gets a little shorter, the wheezes in between more pronounced. When it's over, you feel exhausted just from observing it.
Ryan once described it to me this way: It was as if he were at the bottom of a pool of water, his lungs empty, trying to swim to the surface without knowing exactly where it was. "You're kicking for breath. You're swimming as fast as you can for a breath," he said. "And you're just hoping that the surface is getting closer so you can get out."
When I arrived at the hospital five years ago, Ryan had moved briefly into a private room. I could see very little of him. Two intravenous drips fed his left arm, a heart monitor protruded from a fingertip and his flushed face was hidden behind an oxygen mask. Something had clogged the entrance to his right lung, causing it to collapse from within. He was sleeping on and off. Every time he took off his oxygen mask to talk to me, a monitor over his bed would begin beeping. Attached to the glowing red light at his fingertip, it measured the oxygen saturation in Ryan's blood. The oxygen level dipped precipitously, tripping the alarm, whenever he took the mask off. We quit talking after a little while.
Every two hours, a respiratory therapist woke him and drummed on his back, trying to dislodge the blockage in his lung. The 20-minute therapy continued into the night, which I spent in a chair. The therapist tapped the space behind Ryan's clogged lung from every angle. He took the treatment stoically. But with each new round, he had to be roused from a deeper sleep.
Shortly into an after-midnight session, Ryan began gasping into his one working lung. The therapist looked bewildered. It was an attack. Doctors and nurses began hustling in and out, taking X-rays, increasing his oxygen. Lying in his bed, he was wheeled out of the room and down the hall. I followed close behind. Our eyes met in the mirrored ceiling as we waited for the elevator that would take him back to the ICU. His eyes suggested despair, laced with disgust.
In an asthma attack, the bronchial tubes go into a spasm in reaction to a virus or an allergen; they become inflamed to a point doctors refer to (in cases such as my brother's) as "shutdown" -- virtually no air coming in. In compensation, every breath becomes harder and faster. The panic that sets in only makes it worse, increasing the heart rate, making the body require even more oxygen.
Ryan sat up in bed for four hours trying to catch his breath. At dawn, the doctors performed an emergency bronchoscopy -- tunneling into the collapsed lung with suction. A few hours later doctors told us they'd successfully removed 98 percent of the blockage, and we thought it was over. But Ryan's body was war-torn. The other 2 percent would have to be excavated, but not for a few days. In the meantime, he would remain unconscious, a drug paralyzing him from the neck down so that a respirator could do his breathing for him.
Asthma was once considered to be a muscle spasm, and drugs were geared toward dilating the airways. Doctors now understand that asthma is a pulmonary reaction to an irritant, like a finger swelling around a splinter. The process entails inflammation of the bronchial tissue, so today's drugs reduce that inflammation.
Treatment for children with asthma emphasizes inhaled anti-inflammatory drugs. But many asthmatics rely too heavily on inhalers, which provide only temporary relief and can mask deeper turmoil in the lungs. Another challenge is getting asthma patients to manage the disease with consistent drug regimens, in order to prevent emergency-room crises.
On the whole, deaths attributable to asthma, though growing, are much less frequent than for other major illnesses. What makes the number of deaths noteworthy is the fact that, unlike many diseases that have been known for more than a century, asthma seems to be gaining strength. According to the National Institutes of Health, asthma cases have tripled internationally in the last decade.
Doctors don't yet know why asthma has exploded at the end of the 20th century, but one theory holds that increasingly hygienic human environments are actually making babies more vulnerable; since they aren't as exposed to viruses and bacteria, their immune systems remain immature and unprepared to face them later in life. The recent discovery of two genes that contribute to the onset of asthma will spur even newer research.
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As Ryan slept uninterrupted for the first time in almost two days, I took a short, fitful nap. We were all tired and confused, but there was a measure of relief, too. Before the operation, the doctors had said my little brother might not survive the anesthesia, because his heart rate was incredibly high. My mother had required smelling salts.
But a day later, it looked like she might need them again. Ryan's oxygen saturation wasn't improving, and the level of carbon dioxide in his blood climbed. Doctors were already pumping the most powerful steroids into him, but his bronchi weren't responding.
The doctors were compelled to try using an anaesthetic to dilate his airways, a procedure they'd only read about. During Ryan's earlier bronchoscopy, he had responded well to halothane, one of the original general anesthetics. Now the only option, since even the steroids had failed to open up Ryan's lungs, would be to re-anesthetize him. The problem would be the same as before: Ryan's dizzying heart rate.
Ryan was held under for four hours, and halothane succeeded in clearing his lung inflammation. But he was more damaged than ever, and would have to remain unconscious and hooked to the respirator for several more days. He was put in a hi-tech bed that compartmentalized every limb, held his head in a sort of padded vice and rotated back and forth horizontally to about a 45-degree angle. Ryan had slipped beyond time. For the rest of us, time was announced by the mechanical rhythm of the respirator that caused his chest to rise and fall with alien bursts of air.
It was far from the first time in his life he was pumped up with steroids, the most effective asthma treatment. The most common, cortisone, is manufactured by the body as one part of one of the body's many delicate balancing acts: The body fends off infection with inflammation, and it makes cortisone to relieve it. (The androgenic steroids used by weightlifters are synthetic versions of cortisone, called glucocortoids, and have different results.)
Steroids quickly ended bad bouts with asthma, but the effects on Ryan's personality were pronounced. He became a dynamo with a strange glint in his eye, not unlike an overly aggressive weightlifter, an unsettling sight in a young boy. Steroids are dangerous for children; too much cortisone suppresses the body's own production. In rare cases, steroid use can result in damaging long-term side effects including stunted growth, weight gain, acne, high blood pressure later in life, a push toward diabetes if the patient is already inclined and even a softening of the bones.
Steroids were part of a long list of medications that often ran up to $100 a month. The high cost of asthma medication can be difficult, if not impossible, for some families to pay. This is seen by some doctors as one of the underlying factors in asthma fatalities, most of which have occurred in poor, urban areas, where families often resort to over-the-counter inhalers (such as Primatene Mist) that have little effect on severe asthmatics. In New York, where I live, asthma hospitalization rates in Harlem and the Bronx are as much as 20 times higher than those in more affluent neighborhoods. Air pollution and second-hand smoke, major irritants for asthmatics, can also be more common in the cramped quarters of America's inner cities. Even today's improved insulation, resulting in airtight homes, may have the unintended effect of reducing natural ventilation in homes, regardless of socioeconomics.
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Near the end of his deep sleep, doctors removed the last bit of blockage from Ryan's lung. It was a virus that had unexpectedly caused his bronchi to clog, but an asthma attack had almost killed him -- twice. Even for asthma patients, fatalities due to collapsed lungs are extremely rare.
Six days after he was drugged into unconsciousness, Ryan was slowly revived. It was a delicate moment. The heavy load of drugs, including morphine, had given him strange dreams and had made for a disorienting awakening. He felt like he was riding in an ambulance that was being hijacked by terrorists dressed up as doctors, he later told me, but luckily his paranoid vision didn't induce panic. Panic could have sent him spiraling right back into another asthma attack.
Disconnected from the respirator, he breathed on his own again. Soon he was back upstairs in his own room. It took two more days before he had the strength to stand up. When he did, although he was pole-thin, I noticed for the first time in my life that I was looking up at him.