Until the federal government releases the results of its long-term study on lung volume reduction surgery, emphysema sufferers and their families, desperately seeking information on the procedure's risks and benefits, find themselves bewildered by the wide range of often contradictory information.
A number of emphysema patients describe their post-surgery health as nothing short of a miracle. But no one can say for sure how long the benefits will last. And there are definite risks involved. Patients say their doctors estimate that up to 20 percent of those who undergo the surgery develop complications such as collapsed lungs, infection and swelling.
Some of the patients with complications get better. One man who suffered a collapsed lung and a major infection and had to undergo two major operations after having LVRS in 1998, eventually recovered and now does whatever he wants without relying on oxygen.
For other patients, the surgery is the beginning of the end. Yet others notice little or no improvement in their lung capacity after the invasive surgery. We spoke to several who had undergone the procedure.
'I Would Have Done Anything'
Two years ago, Zella Walker of Sacramento, California, was in the final stage of emphysema. Walker, 74, had smoked for 40 years and quit in 1988. By then she already had the dreaded disease. After hearing about LVRS, she called every hospital she could, trying to get into a NETT program.
"I didn't have the money to pay for it myself, and I was a very sick person, on two liters of oxygen, day and night. I haunted people so they'd listen to me. I even wrote to senators. I would have done anything," she recalls.
Then someone referred her to Dr. Robert McKenna at Cedars-Sinai Medical Center in Los Angeles and Walker drove down for the testing. For eight months she traveled back and forth, staying at motels that her eight children paid for since she couldn't afford even those expenses.
"You wouldn't believe the testing they do: CAT scans and blood work, heart and lung testing. I saw so many psychiatrists. They asked me why I wanted the surgery, and I said I had eight kids and a bunch of grandchildren I wanted to see grow up. Plus I wanted to dance. I used to love to dance."
In December 1998, she learned she had been selected for surgery. She underwent LVRS on Jan. 5, 1999, and stayed in the hospital for almost two weeks. She did her post-op rehab, walking the treadmill, stretching, lifting weights and more tests.
Today, she exercises daily. "Dr. McKenna told me if I stop exercising, my lung muscles will give way and that will be that. So I'm quite active now. I take half a liter [of oxygen] at night because I'm scared and of a liter when I'm on the treadmill, but I walk around all day without it."
Walker's doctors told her they thought they could bring her back to 80 percent lung capacity. She doesn't know exactly whether they reached that goal, but says she feels like a new woman.
"It isn't a cure; don't get me wrong," Walker says.
"I still have emphysema. But the worst part of my lungs were at the top. They were stretched out and lying on top of my diaphragm, and I could hardly breathe. [The surgery] changed my life completely. I always used to be very active. When I got sick, I used to be so down and depressed. Each day I'd wonder how much longer I had'. I know that I got a second chance at life with this surgery, and I thank God every night.
"But not everyone gets it. I think it's terrible that Medicare doesn't cover it because there are people dying every day that don't have it. Even for three years it's worth it. They say
it's experimental. Well, heart surgery was experimental at one time too."
Another Patient's Opinion
Somewhere in the middle of the debate is Barbara Duros of Chicago, who had LVRS on Dec. 6, 2000. She's 62 and had smoked for 40 years. Her insurance paid for the procedure.
"I don't feel as good as some of the people I have been reading about who are out of hospital in four or five days, off oxygen and feeling wonderful, doing all the things they could not do before," Duros says.
"There is noticeable improvement, and I can walk upstairs to my bedroom without stopping -- with two liters of oxygen -- whereas before I had to stop two or three times to climb the 14 stairs.
"Still, you always hear about the success stories, since they are well and happy to be going forward in life, and I'm not there yet. Hopefully as I heal more and exercise, I'll get even better."
Two More Views
Then there is "Kiki," who posted this message on an Internet chat group last fall.
"My father had the procedure done about seven months ago, and he has shown no improvement. He now has damage to his heart, extreme difficulty breathing and very little quality of life. He had done everything he was supposed to do to prepare for the surgery including exercise, pulmonary rehab and rigorous tests and was found to be a good candidate for the surgery."
And lastly there is Lynn of New York, whose sister had LVRS in November 2000. She suffered a collapsed lung and came down with double pneumonia. As of January 2001, she had been on and off a ventilator and was still in the hospital.
"I know this is not the norm," Lynn said in a posting to an LVRS chat group. Doctors have told her that her sister's case is "unique." But that is little solace.
"Things are still not good," Lynn posted on the Web site in mid-January. "We are "living through a true nightmare."
