The Iron Lung: the Marilyn Rogers story

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The Iron Lung: the Marilyn Rogers story

Postby Linda » Thu Jun 09, 2005 7:39 pm

Interesting story about Marilyn Rogers, the iron lung, and Respironics:

Click here for article

Posted on Fri, Feb. 25, 2005

After five decades, iron lung remains life and breath for polio patient

BY TOM MAJESKI

Knight Ridder Newspapers


ST. PAUL, Minn. - (KRT) - Marilyn Rogers was destined to dance. The girl with reddish-blond curls used her muscular legs and gift for graceful moves to dance her way into winning a scholarship from the MacPhail music school.

But at 9 years old, the child who couldn't sit still for more than a few seconds developed the early symptoms of polio, the notorious paralyzing disease that was sweeping the nation in the late 1940s. Within three days, Rogers was encased in an iron lung in Minneapolis General Hospital, unable to breathe or move a muscle below her chin.

Today, more than 55 years later, the girl who dreamed of dancing lies motionless on her back in what experts believe is the last traditional iron lung in Minnesota and one of fewer than 40 in the country. She has slept nearly every night in the machine since she was 9 and has lived in it day and night for about the past 10 years.

Marilyn cannot live outside the iron lung, and although there are modern alternatives, she has been reluctant to try them because she is so emotionally and physically dependent on the antiquated machine.

This year marks the 50th anniversary of the introduction of the polio vaccine, which has all but eliminated the disease in the United States and in many other parts of the world. But Marilyn and her iron lung are icons of one of the most frightening times in America's public health system.

In the post-World War II era, polio was every parent's nightmare. Unsure of its cause, they tried to protect their children by keeping them out of school and off playgrounds. By the time health officials finally gained the upper hand in the mid-1950s, the virus had afflicted about 1.6 million people in the United States and more than 27,000 in Minnesota.

Now 64, Marilyn lives in a cluttered, weathered old house in the upscale Lake of the Isles area of Minneapolis, where nine people take turns caring for her around the clock. She battles depression and worries that the company that maintains the ancient iron lung will stop servicing it, and she won't be able to replace failing parts that no longer are manufactured.

Despite these Herculean challenges, Marilyn possesses a wry sense of humor and rarely complains. She graduated from high school with honors, attended Augsburg College, and helped enact the state's first legislation for people with disabilities.

She nearly married, but turned down her suitor.

"I didn't want to be married. It doesn't lead to a life of freedom. I want a life of freedom," she said in a labored whisper between bellows-induced breath cycles.

After a short pause to permit the irony in her statement to sink in, she added, "I just have to figure that out yet."

Marilyn's 70-pound body lies motionless on a foam cushion held by a metal tray that rests inside her iron lung, which uses negative air pressure to expand patients' chests, allowing them to breathe naturally through their mouths and noses. Her head - her only visible body part - rests on a small folded pillow supported by a steel shelf.

Her world consists of what she can see through a large rectangular mirror mounted on a 45-degree angle above her head.

The iron lung sits in a first-floor room that once was the library of the house inherited by her stepbrother, who does not live there. Personal care attendants sleep on a small bed nearby to monitor her through the night.

Corked walls are plastered with assorted mementos. Spare batteries, battery chargers, ventilators, a wheelchair and other medical equipment are interspersed with household items stacked along the walls. Her health care is paid for by Medicare, Medicaid and the March of Dimes.

To prevent dehydration, Marilyn drinks water or milk through a flexible plastic straw inserted into a small glass resting next to the right side of her face. She uses her tongue and lips to maneuver the straw into her mouth whenever she wants a sip.

She talks in short sentences that only can be uttered when the machine is forcing air out of her lungs.

She spends the day running the household from her iron lung, chatting with her personal care attendants and watching some TV. Her attendants keep her up to date on current events by reading to her from the newspaper.

To help battle depression, she takes Prozac. "It helps sometimes," she says with a smile.

Her iron lung was built decades ago by the J. H. Emerson Co. of Cambridge, Mass. It consists of a large, steel cylinder that resembles a mini-submarine.

A small electric motor underneath powers a drive belt connected to a gearbox similar to those found on 1938 Chevrolets. The gearbox forces a large, leather bellows at the far end of the cylinder to pump in and out 10 times a minute.

Marilyn has ventilators that use positive pressure to force air into the lungs through a tracheotomy tube, but she uses them only on a temporary basis because they force bacteria growing in her tracheotomy tube into her lungs, increasing her risk of developing a life-threatening infection.

"The lung is her life," said Kris Lindeman, one of her personal care attendants. "If she doesn't have the lung, she's dead."

That's why Marilyn became upset in September 2003 when Respironics, the Pennsylvania company that maintains her iron lung, informed her that it was running out of spare parts and could not service the machine after March 1, 2004. A company letter advised her to look for an alternative.

According to Amy Nesbitt, a spokeswoman for Respironics, only 37 Emerson iron lungs still operate in the nation. There are other models in service, but most have more modern designs and are found primarily in health care facilities.

"We are not the original manufacturer," Nesbitt said. "We don't have the mechanical drawings, and we can't produce new parts."

The company is encouraging the few remaining iron lung-dependent patients to switch to other breathing devices, Nesbitt said, including a smaller, computerized, fiberglass version of the iron lung called a Port-A-Lung. A computer automatically adjusts vacuum pressures and cycle times to maintain optimum oxygen levels as needed when the patient is awake and asleep, in contrast to the iron lung, which requires manual adjustments.

However, Marilyn is reluctant to make the transition.

Even though the Emerson lungs are archaic, cumbersome and noisy, they are built like old farm tractors: sturdy, reliable and easy to repair. For Marilyn and others who have trusted them with their lives for decades, the old machines are like gigantic security blankets and the constant hum they generate is comforting.

"Respironics is more than happy to work with patients and caregivers on the transition," Nesbitt said. "But change is scary for people. Respironics understands that."

The maintenance crisis temporarily ended in mid-January, when two Respironics field service representatives spent several hours at Marilyn's home, adding oil to the gear box, swabbing the large leather bellows with neat's-foot oil, greasing all the fittings and then replacing gaskets, a pressure gauge and a drive belt. They also assembled a spare collar and left it, along with a new gasket, just in case the current collar fails.

No one knows how long the machine will continue to operate. But Marilyn has two old Emerson iron lungs stored in her garage. Her brother, John, a retired ship machinist who lives in Seattle, may salvage the parts from them to keep her machine running in the future.

The polio scourge, which swept through the nation during the summers following World War II, usually culminated during the hot weeks in August. Striking suddenly, the paralyzing disease caused by an orally transmitted virus triggered a severe headache, then muscle pain.

It peaked in 1952, when polio struck 53,000 people in the United States, said Larry Kohout of Edina, a spokesman for the Post Polio Awareness and Support Society.

Staff at the University of Minnesota Hospital handled 900 cases that year, he said.

"It was like being in combat," Kohout said. "The doctors were at their wit's end. They were sleeping in the hospitals, working around the clock."

The disease caused everything from temporary paralysis in one limb to total paralysis and death. Newspapers during that era often published photos of iron lungs lined up in long rows, with the head of a smiling youngster protruding from each machine.

Hope for an effective treatment began to mount in the early 1950s when Dr. Jonas Salk announced the development of a vaccine. When field tests conducted in 1954 confirmed its effectiveness, euphoric Americans rang church bells, sounded fire sirens, shouted, clapped and sang. Widespread vaccinations began the following year.

To this day, Marilyn does not know how she contracted the disease. But in August 1949, she developed a serious headache and an examination of her spinal fluid at Abbott Hospital in Minneapolis confirmed the worst.

"The doctor told me I had the highest cell count he ever saw," she said.

Marilyn, who could still walk at the time, was transferred to Minneapolis General Hospital because it had a polio ward. A doctor there performed some muscle tests and she remembers dancing with another patient. It was the last time she ever danced.

Two days later, she was moved into an iron lung and told to relax. Although the machine is confining, she never felt claustrophobic, she said.

Six months later, infectious meningitis was discovered on the floor and 80 patients, including Marilyn, were moved to the Sister Elizabeth Kenny Institute in Minneapolis. She was there for two years and hated every minute of it. The treatments were rigorous and she sank into a deep depression.

Months later, after surviving the acute stage of the disease, Marilyn took a look at her feet and the calluses she had worked so hard to develop as a dancer.

To her dismay, they had disappeared and her feet "looked like totally useless things to me," she said. The discovery intensified her depression.

At the time, patients dependent on iron lungs could not leave the institute.

That changed when the March of Dimes purchased the iron lungs and allowed patients to take them home. Marilyn, who was 12 at the time, weighed only 29 pounds.

Once at home and able to breathe outside the lung during the day, Marilyn was anxious to renew friendships.

"There wasn't anything there for me," she said of her first reunion meeting with her girlfriends. "They weren't anything like me. They were like little girls, and I wasn't."

Going outside was also a challenge because people would stare at her. She was wheelchair-bound with medical equipment attached to her and the chair. But Marilyn went out each morning and "tried to adjust to life on the outside."

Although she was not pregnant, Marilyn completed high school by taking advantage of a new state program designed to teach pregnant students at home because, back then, they were prohibited from attending class.

Marilyn graduated with honors and enrolled in Augsburg College. Although she came close to graduation, Marilyn quit when she grew discouraged. But leaving school triggered another problem. "I got bored out of my mind," she said. To keep busy, she spent a lot of time with friends. Because she only needed an iron lung for sleeping, Marilyn would often stay up all night chatting to avoid going back into the machine.

In 1970, Marilyn visited her brother, John, in San Diego for six weeks after he arranged to have an iron lung brought into his home because she needed to sleep in it. While there, she discovered curb cuts and wheelchair ramps, innovative features that made navigation easier for people with disabilities.

"The curb cuts were made by individuals, not by the city," said Marilyn, who spent her days in a motorized wheelchair.

When she returned to Minneapolis, Marilyn teamed up with a friend, Audrey Benson, who was attempting to organize Minnesotans with disabilities.

They eventually formed the United Handicap Federation and, for 10 years, pushed lawmakers to adopt regulations to make Minnesota more accessible for people with handicaps. One of the group's achievements was the Metro Mobility program, which provides rides to people who use wheelchairs.

"Our goal was accessible mass transit," Benson said. "Marilyn was pretty shy, but we did get her to go to the Legislature with us and she worked on committees with us. She was very, very smart."

Benson said Marilyn regularly lobbied lawmakers and worked on a committee that pushed for vocational training for people with handicaps. She also did a lot of fund raising for the organization, Benson added.

"You couldn't get a job if all the other parts of the puzzle are missing," Marilyn said. "You couldn't get a job if you couldn't get there. It was the hardest job we did."

About 10 years ago, Marilyn began suffering the affects of post polio syndrome, a little understood phenomenon that involves a late-onset reoccurrence of the disease's symptoms. It strikes as many as 40 percent of polio patients, causing a number of problems, including increased muscle weakness and breathing difficulties.

Over time, Marilyn lost the ability to move her arms and to breathe on her own. Now when she is removed from the iron lung - for short periods and usually for doctors' visits - she must be hooked to a battery-powered ventilator. But her lungs don't work as efficiently on the ventilator as they do in the iron lung.

Even though leaving her house is a logistical challenge, Marilyn gets a kick out of visiting the State Fair. She likes to tour the animal barns, check out the butter sculptures and eat the food.

Despite the numerous challenges and limitations she's faced during the past 55 years, Marilyn says she's had an interesting and beautiful life.

"It's been a helluva life and I've done a lot of things," she said. "You have to go live your life any way you can. I have no regrets."

---

POLIO FACTS

_Polio is a disease caused by a virus.

_Transmission occurs through the mouth.

_Illness can be mild with sore throat, stomachache, low-grade fever, or severe with paralysis and even death.

_The introduction of a vaccine in 1955 wiped out polio in the United States, but the disease is still prevalent in other parts of the world.

_Polio viruses are commonly found in human feces.

_Scientists believe the polio outbreaks of the 1940s and early 1950s were triggered by improvements in the nation's sanitary sewer systems.

_Prior to the advent of modern sewer systems, Americans were in constant contact with open sewers and privies, which enabled them to build up a natural immunity. Mothers passed along partial immunity to their infants at birth. When the infants became toddlers, they developed mild forms of polio, which gave them a life-long immunity to the disease.

_Modern sewer systems eliminated wide exposure to the virus, thereby breaking the immunity chain.

---

© 2005, St. Paul Pioneer Press (St. Paul, Minn.).

Visit the World Wide Web site of the Pioneer Press at http://www.twincities.com/mld/pioneerpress/

Distributed by Knight Ridder/Tribune Information Services

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