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On Borrowed Time

The last iron lung users face a future without repair service

Dolores Thompson hasn’t slept in a regular bed since 1950. That was the year Thompson, now 64, contracted polio when an epidemic swept through her hometown of Wytheville, Va., in the Blue Ridge Mountains. An iron lung kept her alive during the acute phase of her illness, which damaged her diaphragm, and an iron lung still regulates her breathing when she rests and sleeps.

Thompson and about 40 other polio survivors may soon be forced to give up their trusty iron lungs, a symbol of the ’50s epidemics, and try to adapt to more modern devices. Respironics Colorado of Thornton, Colo., the only company that provides and services iron lungs, stopped guaranteeing parts and repairs for the equipment on March 1. The manufacturer, J.H. Emerson Co. of Cambridge, Mass., hasn’t made the apparatus since 1970.

"They’ve left us high and dry," says Thompson, who now lives in San Diego. "I haven’t had a lot of problems with the iron lung, but it is a machine. I’m living on borrowed time."

Terminating the service guarantee "is immoral and unethical," says Richard L. Bruno, director of the Post-Polio Institute, Englewood Hospital and Medical Center in New Jersey. Respironics "made a commitment to these people, and they need to keep their word."

He is perplexed why the company doesn’t provide fully for the small and rapidly diminishing group of users. "How expensive can it be to maintain [the iron lungs]?" he asks. "The iron lung is as simple as a washing machine. It’s not like they have to maintain the space shuttle."

Although since 1996 Respironics, under an arrangement with the March of Dimes, has supported the needs of post-polio patients, says Tim Murphy, the company’s vice president and controller, "that was an agreement to support the equipment needs and the service needs, but it was never an agreement to support a specific piece of equipment or model."

The company and the nonprofit Post-Polio Health International are searching for iron lungs that can be used as substitutes and for parts. Respironics has offered to donate iron lungs to users who will assume responsibility for maintenance. "As an FDA-regulated company, we have limitations on the suppliers and repair sources that we can accept into our system," Murphy says. "But if the patient assumes ownership, then they can seek repairs from a nonregulated third party."

About 7 feet long and weighing 700 pounds, an iron lung is a cylindrical steel drum that encloses the entire body except the head. It works on negative pressure, in effect pulling the user’s chest wall outward to allow air into the lungs and then reversing the pressure within the chamber to allow exhalation. Introduced at Children’s Hospital, Boston, in 1928, iron lungs crammed hospital polio wards by the dozens during midcentury epidemics.

Some newer ventilators use positive pressure, forcing air directly into lungs. Others operate like the iron lung, and some of them are small and light enough to allow users to go out and even travel while wearing them.

Jerry McCready of North Little Rock, Ark., used to sleep in an iron lung but about six months ago switched to a stationary fiberglass model that is smaller and lighter. "I breathe much better in it," he says, "and it’s also easier for me to get in and out of because it’s lower to the ground. Some people are afraid to make the change. I urge people to try it out and not be afraid of it."

Other iron lung users have been unable to switch because they can’t breathe as well with newer devices or fear suffocating in their sleep. "I don’t know if it’s possible for some people to switch," says Dolores Thompson. "It’ll be a death sentence for those who can’t adjust."

Marilyn Rogers of Minneapolis, confined to an iron lung around the clock since 1949, hasn’t been able to switch, but she has obtained a backup iron lung. Thompson, who has also unsuccessfully tried various models over the years, remains unsure of what she will do.

"I’m going to sit down with my pulmonologist and discuss my options," she says. "This is the reality, so I’m not wasting my remaining time on bitterness and anger. I’ll just have to find something else that works."

Roxanne Nelson is a freelance medical writer based in Seattle.