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A breath of hope

Reducing the size of damaged lungs can improve the quality of life for some emphysema patients.

Take a deep breath and hold it. Now, without exhaling, try to take another deep breath. That feeling that your lungs are mired in concrete is how people with severe emphysema feel a lot of the time, especially when exerting themselves.

"The lungs feel as if they're too big for the chest," says Dr. John Reilly Jr., the medical director of the Lung Transplant Program at Brigham and Women's Hospital in Boston. "They don't collapse normally, so that the lung can never fill all the way up."

Emphysema, a chronic lung condition usually caused by smoking, afflicts an estimated 2 million people in the United States, most of them over 50. In emphysema, the tiny air sacs in the lungs where oxygen enters the blood are stretched out and lose their elasticity. The lungs, as a result, don't expand or contract efficiently.

In severe cases, people need continuous oxygen and may be unable to do much at all. "You feel like you're not taking in enough oxygen, you're tired, and you are gasping for breath," says Joann Martin, 61, of Hingham.

Martin is a volunteer for a trial of a controversial surgical treatment that is being tested at Brigham and Women's and 18 other hospitals around the country. It's a bold technique: Surgeons remove up to 30 percent of the lung tissue; the remainder expands, once given the room.

Lung volume reduction surgery, as it's called, improves breathing dramatically for some people with emphysema, but does little good for others. And there's a risk of death, especially in older, frailer people.

"The basic question is, does lung volume reduction surgery have a role in treating severe emphysema? And who are the patients most likely to benefit?" says Dr. Gail Weinmann, a medical officer at the National Heart, Lung and Blood Institute, which is sponsoring the trial that began in 1997. The official name of the study is the National Emphysema Treatment Trial, or NETT. The goal is to enroll 2,500 patients - half of whom will be randomly assigned to undergo the surgery. The other half will receive medicine to open their breathing passages and reduce inflamation and will take part in breathing and exercise training.

The trial is also being sponsored by the Health Care Financing Administration, which manages the Medicare program. At present, Medicare does not routinely pay for lung reduction surgery and wants better information on the surgery's effectiveness and risks to help decide whether it should.

The mortality rate in the surgery has ranged from about 4 to 10 percent three months after the operation in a large series of cases; in another series, it was as high as 24 percent mortality at one year.

The current research also is aimed at identifying characteristics of patients and their disease that raise or lower their risk. Researchers are still working to determine the mortality rate in people who don't get the operation.

So far, the NETT trial has enrolled about 40 patients at Brigham and Women's, half of whom have undergone the surgery. Edna Hatton, 69, of West Newton, is a firm believer that the operation had a marked benefit.

Over the past three years, Hatton's emphysema had robbed her of many of her favorite activities, including foreign travel, tennis, and walking long distances. "I was using inhalers, I was on oxygen all the time - there was nothing my doctor could do," she says.

Last summer, she went through the intensive 6-to-10-week course of medication and breathing exercise that all patients in the trial receive, before they are chosen by a coin toss for either surgery or just further medical treatment. They also must agree to quit smoking. In August 1999, Hatton had the surgery and says her recovery went smoothly.

"As soon as I woke up, I could breathe deeply," says Hatton. She has continued to improve and says she can go shopping by herself, garden, clean house, and, best of all, travel: In December, she took a cruise to Cozumel.

Even so, nobody can tell Hatton how long the improvement will last.

The lung reduction operation can be done either through a large incision in the chest and ribs or by using a newer, minimally invasive procedure carried out with fiber-optic viewing devices and cutters that enter the body through three separate small incisions.

Usually, Reilly says, patients don't begin feeling the benefits until a month or so after the operation. People considering the surgery need to know that while their quality of life may be better, it probably won't help them to live longer. "Most of us think the operation is for improving quality of life, but not for prolonging it," says Reilly. In fact, there's some concern that the stress of the surgery may actually accelerate damage to the lungs.

One encouraging finding, though, is that the initial medical and rehabilitation training that all the candidates go through is beneficial in itself. Martin, the Hingham woman with severe emphysema, recently was entering the rehab sessions and subsequently will be assigned to surgery or no surgery by the flip of a coin. If she's not selected for surgery, she still must continue the medical and exercise treatment for five years to provide data for the study.

Nevertheless, Martin is glad to have a shot at the lung operation. "I feel that it is a ray of sunshine for me," she says. "I know enough about the disease to know there's not very much help out there."

Information about the NETT trial is available by calling 800-314-2597 or on the Web at www.EmphysemaStudy.org.