Who Says You're Out of the Game?

You'll find the hardware here also, but the heart of this cover story is lifestyle. To too many uninformed observers, the vent life is a contradiction in terms -- how can you have a decent life when you're plugged into the local utility? Here's rich evidence that life doesn't end after mechanical ventilation from the people who know best -- readers who use vents. They put to rest the vexatious quality-of-life issue, and prove that a vent is just a machine, not an enemy.

The Vent Life by Barry Corbet >See also Bully Pulpit >The Quality-of-Life Issue >RFs Are All Around You and Guess Where They're Showing Up? by Jerry Daniel New Mobility Talks to Vent Users by Barry Corbet Mission Possible? Converting to Noninvasive Ventilation by Jean Dobbs >Keeping the Trach >Manufacturers >Resources

THE VENT LIFE

By Barry Corbet

Once again, we look to the experts -- in this case, to people who use ventilators. From what they have told us about the vent life, we can pass on some generalizations.

The biggest single problem vent users face is the outrageous cost of their equipment and care. Many who use invasive ventilation need skilled nursing, and paying for 24 hours a day of that can be a nightmare. A few have trained friends, family and unskilled help so well they feel comfortable with a minimum of nursing care.

The care level may not be a matter of choice. Many states mandate skilled nursing for vent users. That annoys those who feel they can get by with cheaper help, and alarms those who fear their essential nursing will be cut by the current enthusiasm for cost containment.

At any level of care, by the time you throw in a couple of $10,000 vents and a power wheelchair -- and some way to transport them -- you've run up a rather astonishing bill. Consequently, most vent users must rely on Medicare, Medicaid and entitlements. An admirable few can make enough to pay their own medical expenses, but it's a fiercely heroic life they lead.

Can you learn to love your vent? Sure, said most -- it's the breath of life, and it becomes part of you. Others curse their vent as a noisy, cranky umbilical cord to a wall socket. Most gripes are not about the machine itself, but about dependency, the perception of being a burden and lack of privacy. What's the hardest thing about using a vent? It's unanimous: when it doesn't work.

Ventilators are dependable and failures are rare. Yet almost everyone we talked to has a couple of horror stories. The lines of defense, successively, are "frog-breathing" for those who can do it, a spare vent, the Ambu-Bag and calling 911. Some admit to a lingering uneasiness about it.

Our experts -- even those who have spent several decades on a vent -- are generally in good health. The most common complaint is needing more time on the respirator. Most feel they've learned enough over the years, and are good enough at reading their own bodies, that they can tell when they -- or the vent -- have a problem.

The MDA comes in for some criticism, this time for its lack of support for mechanical ventilation for people with Duchenne muscular dystrophy. Why, vent users ask, does the MDA feel their quality of life is so low that ventilation is a waste?

That's a point everyone agrees on -- quality of life should be defined by the person living that life, not somebody else. Not anybody else.

The Quality of Life Issue

Is a reasonable quality of life possible if you use a ventilator?

Many doctors and allied health professionals don't think so. The most common reason that MDA clinic directors cite for discouraging ventilator use is poor projected quality of life. But the health professionals' low opinion of the vent life is not shared by the people living those lives.

If your doctor, nurse or even your family and friends are telling you that your life will be terrible if you go on a ventilator, hand them a copy of these studies. And tell them to go fish.

A 1992 life satisfaction study by John Bach compared responses by 80 Duchenne muscular dystrophy ventilator users to responses by 273 MDA clinic directors. The clinic directors significantly underestimated the users' reported life satisfaction. The study concluded that patients who were perceived by physicians to have a poor quality of life were less likely to be offered assisted ventilation. In a 1992 study by Bach and Campagnolo of 395 ventilator-assisted people who'd had polio, 86 percent reported their lives were characterized by hope, value, freedom and happiness. Forty-two percent of the ventilator users were employed and 39 percent were married. Yet again, the health professionals used for controls underestimated the life satisfaction of people using ventilators and overestimated the difficulties. It was concluded that physicians should be aware of their inability to accurately gauge the life satisfaction of individuals and should not use their perception of poor quality of life as a reason to deny ventilator assistance. In a 1994 life satisfaction study by Bach and Tilton, 42 ventilator-assisted quads and 45 autonomously breathing quads were compared to a control group of health care professionals. Both groups with spinal cord injury reported higher life satisfaction ratings than were predicted by the controls. Notably, the ratings for those who used ventilators were higher in some areas than for those who didn't -- the former were dissatisfied with sexual function only, whereas the latter were dissatisfied with their jobs, health and sexual functioning. Vent users said life was friendlier, more interesting, more enjoyable, fuller and more hopeful than non-vent users. A 1992 study by Whiteneck, Charlifue and Frankel of people with spinal cord injury at least 20 years post-injury showed that those using ventilators rated their quality of life higher than those who didn't, and had a lower rate of suicide ideation. -- Barry Corbet

The above information was taken from "Independent Living and Quality of Life Among Persons Who Use Ventilators," an in-press book chapter by Margaret A. Nosek, Ph.D., and S. Ann Holmes, M.D. Both authors are ventilator users themselves.

RFs Are All Around You and Guess Where They're Showing Up?

By Jerry Daniel

One thing home care ventilators and power wheelchairs have shared in the last 10 years is a big improvement in motor control electronics. We have gone from analog electronics to digital and brought in the microprocessor.

Early joystick controls were crude and caused the wheelchair to track unevenly on different surfaces. Volume ventilator motors were inclined to either surge or slow down on piston forward motion, and breaths-per-minute timing had to be periodically recalibrated. Microprocessor control of all these functions is noticeably superior on the ventilators and power wheelchairs of today.

With the new technologies, there are minor negative trade-offs. The motor control circuitry generates radio frequency waves, sometimes referred to as RFs, at several different frequencies. I recall the first time I set my AM bedside radio on top of a microprocessor-controlled ventilator. The RF interference from the vent made the radio unusable.

Of greater concern, microprocessor motor control circuitry can be affected by external RFs from such sources as broadcasting antennas and cellular phones. If I were to use a cellular phone, I would test the equipment by moving the active phone all around the ventilator and wheelchair control module. It should be done with help standing by in case the vent or wheelchair goes into erratic operation. Quickly moving the phone from close proximity should correct the problem.

Government agencies and equipment manufacturers are still gathering information on the dangers of using cellular phones near vents and power chairs. Apparently nobody has yet been harmed by cellular phone emissions. Nobody has lost a bunch of ventilator breaths or been driven off a curb by affected circuitry.

But there is a legendary story of a man who was operating his power chair on a mountain in Colorado near an antenna farm. RF waves made the wheelchair carry him off the mountain and he was seriously injured.

It's a rare occurrence. I live two blocks from an AM broadcast antenna field and use a volume ventilator and power wheelchair. My vent has never given even a hiccup of RF interference and the chair hasn't taken me anywhere I didn't want to go. Yet we need these new technologies, and liability lawsuits have already affected product pricing.

Jerry Daniel is the owner of Ventek, a ventilator repair service in Vancouver, Wash.; phone: 360 / 693-9013.

New Mobility Talks to Vent Users

By Barry Corbet

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"Don't be afraid of ventilators."

Greg Franzen, 29 C3-4 spinal cord injury St. Louis

Greg Franzen has lived with his parents since 1983, when a broken neck left him a 24-hour-a-day vent user. "I would like to be independent," he says. "And while my parents don't mind my being here, I think they would like to have their lives back, too. So I'm still living at home with the goal of moving out."

The obstacle is the cost of the nursing care Greg needs. "We have nurses 70 hours a week, and sometimes friends will relieve my parents. But there are 168 hours in a week, so there's a lot of hours that aren't covered."

Could he manage outside? Maybe not. "The way the insurance looks at it," he says, "you need skilled nursing. I agree with that. But if that's the case, then they won't pay for attendants. Now if I get attendants to fill in the non-nursing hours and they do a satisfactory job, will the insurance say that I don't need skilled nursing anymore? That would be devastating. I don't know if it's true -- I'm too afraid to ask."

If he lost his skilled nursing care, would a nursing home become a threat? "Very much so," he says. "People with vents are very, very vulnerable because of the cost issue. And when we have these Dr. Kevorkians running around, and with a budget crisis, I'm a more attractive target than other people just because of the expense."

It all adds urgency to the cost issue. "Somehow," he says with finality, "I need to be able to make enough money to take care of myself."

Greg might seem well-equipped to do that. He graduated in 1990 from the University of Missouri with a degree in environmental design. The trouble is, Greg says, salaries start at about $15,000 a year. "If I'm going to make $15,000 a year, and my costs are over $80,000 a year, what good is that going to do me?"

So he stays at home. In the meantime, how's his quality of life? "I think it's excellent." What makes it good? "My zeal for life. My love of life."

Not everyone, Greg knows, agrees with his assessment. It doesn't surprise him that nondisabled people don't understand why he wants to live. "But they shouldn't say that our lives are not worth living or are not worth paying for. It's not OK to say that we have no quality of life. That's just the biggest hoax."

He's passionate about this issue: "For people in Congress -- or even in churches -- that's the hurdle they have to get over. But see, until you're in my situation, you don't realize that in our hearts, everyone has a desire to live. For them to make judgment calls is really irresponsible."

And he's equally passionate in his advice to someone who needs ventilation. "To a person with MS or MD or ALS who is getting weaker, I would say, get a vent. Life's worth living. Don't die just because you can't breathe on your own. You can have many fun, productive years after you go on the vent.

"It's not a hard choice. It's only hard because of people's fear of becoming a burden. I think that's the No. 1 fear of people going on a vent. It's tough, man. But make the choice for it. Don't be afraid of ventilators."

--------------- "A ventilator, an electric blanket -- what more could I want?"

Bonnie Hagy, 54, Polio '53 Frank Hagy, 67, Chronic bronchitis Monrovia, Calif.

After nine months in an iron lung, Bonnie Hagy was glad to get off mechanical ventilation. After two years of autonomous breathing, she was glad to go back on. "It was a relief," she says. "My breathing was borderline." She now uses a vent 12 or 13 hours a day.

Polio left her with no use of her arms, but enough function in one leg to propel a manual wheelchair. Whatever possessed her to marry another person with a disability? "I guess I fell in love with him." Is a double disability a blessing or a curse? "That's hard to say. I've never been married to an able-bodied person."

They've been a couple for 17 years, and it seems to work. They each have their own attendant, and they share one on weekends. "When I'm tired," says Bonnie, "he understands. When he's tired, I can say, 'Yeah, honey, I get it.'"

Has she, over the years, learned to love her vent? "It's like saying, `Do you love your arm or your leg?' There are times when I'm so tired that I crawl in bed and get on that vent and I say, `Ohhhh -- a ventilator, an electric blanket -- what more could I want?'"

Frank Hagy has used a vent since 1956 for chronic bronchitis, a consequence of a childhood illness. "It caught up with me when I was 28," he says. By 1975, he was a 24-hour-a-day ventilator user and says he has no tolerance for time off the vent. When he needs to get to another machine, he uses an Ambu-Bag.

There were no tough decisions about his tracheostomy: "I had no choice. I was unconscious." And he's never had regrets. "I know a lot of people are afraid of trachs. I don't see any reason to be. It's just so simple to hook up -- and unhook if you have time off the machine. And if you get sick, they can ventilate you quickly and better.

"These movies make me sick, where they have this big decision, for a guy who has MD. `Oh no, we're not going to let him go on a ventilator. His life would be so terrible.' And they make that decision. We know a lot of people with MD who've had pretty good lives, and I know we have."

What makes it good? Church, gardening, friends. Just life. And something else: "Feeling that you make a difference," he says, "that you can love someone and be loved back."

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"I would rather live. And I would rather live well."

Margaret Nosek, 44 Spinal muscular atrophy Houston

Margaret Nosek is a faculty member at the Baylor College of Medicine and a well-known researcher and writer on disability issues. A woman in motion, she thought hard before accepting a ventilator.

"There was a lot of negative self-image stuff," she concedes. "I told myself, `I'm falling apart, I'm not worth anything.' And there's this unwillingness to adopt yet another piece of equipment in your life." But six years ago, she started using BiPAP ventilation at night.

"Once I did, I felt so much better. It's night and day. It's like being dead versus being living.

"Why live your life in a fog with a constant headache and always having nightmares and being nervous and jumpy when you don't have to? It's like taking aspirin for a headache -- if it's there, why not use it?"

Her advice to nasal mask users is to get a custom-fitted mask. "There's no way to get a good seal on a standard industrial mask -- I tried one at first, and it was horrible. But they have these custom-made masks, and I really don't understand why they're not used more often. It solved the problem completely. Why aren't they more popular?"

She does see a tracheostomy in her future. "I think it's inevitable. I don't think nearly as negatively about it as most people do. I have lots of friends who use some sort of noninvasive ventilation, and some are so insistent that they would rather wither and die than be trached. I would rather live. And I would rather live well. I know people who are living very successful and happy lives on trachs.

"We live with this negative stereotype about ventilators -- there's this image of people with multiple system failure at the end of their lives. That is absolutely not the way to look at it for someone with a chronic disability. It's a piece of technology that can help us live better."

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"If you still want a life, you've got to live one."

Arne Jorgensen, 39 Muscular dystrophy Lake Hopatcong, N.J.

"I was lucky for awhile," says Arne Jorgensen. "Around puberty, I used a wheelchair for the first time. It was 20 years before pneumonia and an electrolyte imbalance put me on a vent.

"There was no choice involved. I woke up in a hospital bed with an airway in my throat. It's like having the creature from the Alien movies leave its ovipositor in your throat after laying its eggs there. Then I agreed to have a tracheostomy."

When his father died a few years later, Arne began an epic effort to escape a nursing home. (See My Spin, December 1995, for that story.) He succeeded, and now lives independently.

He likes his life. "I actually do more now than I did before I used a vent," he says. "I write, I go shopping, I go to the movies and to music clubs. I've had a girlfriend since being on a vent."

Like others, he struggles with self-image: "I bounce between days when I think my trach and vent tubing ruin my looks and days I think I look pretty good. I used to hide my trach with a bandanna. Now I let it all show. I don't think anyone inclined to like me stopped liking me after seeing my trach."

Arne can spend time off the vent, but he says it's a trap. "If you can breathe on your own to some extent, you're open to guilt over not doing it more. People exert pressure on you. I've been told that I was `addicted' to the vent. Family members have used it as an emotional bludgeon. For me, spending time off the vent is a practical matter of preparing for vent failure."

And it's a matter of lifestyle: "If I just watched television all day, being off the vent much more would be no problem. I'm a writer though, and it's hard to concentrate when you're not breathing comfortably.

Arne's advice: "Using a vent doesn't mean your life is over. Even if others write you off, self-defeating behavior is the main thing that can sink you. Needing a vent is a deep wound, but if you still want a life, you've got to live one."

Arne, who says he's a "totally tubular dude," has a question for us all: "What's green and makes house calls?" Answer: "Mucus Welby, M.D." Thanks, Arne.

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"Unfortunately, I have to work for a living."

Jerry Stein, 58 Polio '50 Long Beach, Calif.

It's tax season, he's busy, and he's a man of few words. Since 1959, he's been self-employed and off all entitlements. He owns his home and pays for his attendant care. Yet he's used a power wheelchair and been a vent user -- at night only -- since he got polio in 1950.

He makes his living as an enrolled agent for the Internal Revenue Service, licensed by the Department of the Treasury. Very few vent users manage to leave their entitlements behind, but he doesn't boast about it. "Unfortunately," he says, "I have to work for a living." And more.

"I'm very active in the community, I'm active politically, and as an officer in professional groups. I know enough politicians I can pick up a phone and talk to them. Nothing exceptional," he says. For fun, it's the theater, motion pictures and concerts. Then he has the temerity to say, "I don't have the oomph I used to have."

How much a year does his disability cost him? "Oh jeez, my attendant care runs close to 30 grand a year, and the odds and ends, maybe $35,000. It's big bucks."

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"Last October was 41 years, so I beat the odds."

Bob Cowfer, 65 Polio '54 Osceola Mills, Pa.

"I'm one of the last hangers-on from the old days of the iron lung," Bob Cowfer says with some pride. "I spent four months in one, and the day they took me out was Day One for the ventilator." He's been using a vent, full-time, for the 41 years since.

Joyce, Bob's wife, has provided virtually all his care with occasional help from a nurse's aide. Wherein lies a problem: "We're running out of the time period when the nurses knew about polio," he laments. "The new ones, and even a lot of the new doctors, just don't know about polio."

Bob's speech is smooth and uninterrupted by the vent. The reason, he says, is that he replaces the exhalation valve that comes with every vent with a one-way valve about 8 inches below the trach. "Do away with the exhalation valve," he advises. "It might not work for everybody, but for me it's just like breathing normally."

His health, he says, is good. He's gained more weight than he would like, recently got his first pressure sore, and has pain in his legs and feet that gets him down at times. But he keeps busy and is a new voyager on the Internet -- he spends a few hours every day on-line.

The VA hospital where he did his rehabilitation didn't predict a long life for Bob. "They told Joyce I would probably live about 20 years," he remembers. "Last October was 41 years, so I beat the odds." He'd like to communicate with other polio quads who were in iron lungs. His E-mail address is Robcwr@clearnet.net.

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"I was so ready to get rid of the trach."

Tedde Scharf, 53 Limb girdle muscular dystrophy Tempe, Ariz.

For Tedde Scharf, director of Disability Resources for Students at Arizona State University, a vent came as a surprise. "I didn't realize what was wrong when I had respiratory failure," she says. "It tends to sneak up on you. I thought I was getting old and losing my memory, but it was an oxygen deficiency."

She was trached -- "It was such a relief to breathe that I didn't fight it"--and used a ventilator full-time for seven years. But she's living proof that trachs need not be forever. In March 1995, she had the trach removed and successfully switched to noninvasive ventilation.

"I'm still on vent 24 hours a day," she says, "but I use a nasal mask at night and a Pneumobelt during the day so I'm able to talk and breathe." The Pneumobelt has posed few problems for her, she says. "I can't speak as fast with the Pneumobelt. It's taken me a while to learn that I don't need to speak as fast."

It's been a good change, she says. "I had gotten to where I had chronic infection around the trach, and they couldn't treat it because I'd become resistant to all the antibiotics. So having it removed was great."

She went to the Dallas Rehabilitation Institute for the switch, and found an entirely new way of living with a ventilator. "I'd been told by the doctors at Dallas that a lot of patients fear switching because the trach is comfortable; it does the breathing for you. But I was so ready to get rid of the trach. The minute they showed me the coughing and breathing exercises, all the techniques for keeping the lungs stretched and elastic, I just went right into it."

Tedde's something of crusader for noninvasive ventilation these days. It isn't for everyone, she says, but for some people, it can make a huge difference. She's wants to start a noninvasive ventilation clinic in Phoenix.

She has some advice: "Anybody who has a neuromuscular disability should get hold of a respiratory therapist and learn how to do the breathing exercises. I really think if I'd been stretching my lung capacity earlier -- and maybe even had some nighttime ventilation--that I wouldn't even be on a ventilator today."

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"You get stronger and healthier if you're breathing properly."

Sunny Weingarten, 54 Polio '49 Denver

He used an iron lung, up to 18 hours a day, for 38 years. Since iron lungs weigh 650 pounds and are not portable, he spent every night of those years in the same bedroom in the same house--his parents'. When he wanted a change, he invented the Porta-Lung.

Sunny's invention weighs a sleek 100 pounds. With it, he can travel and live independently. So can hundreds of other vent users.

Like the iron lung, the Porta-Lung is a negative pressure system. Why would anyone choose such an old-fashioned technology? Because, says Sunny, that's the way respiration works in real life. And because you don't need a tracheostomy and you don't need a mask. Not bad.

Sunny lives in his own house (see Spinal Network, Second Edition for the saga of his long journey home) and his nephew does most of his personal care. He has coached Little League baseball for nine years and been a director of North Metro Mobility for 10. He operates his business from home with a friend, and it's successful. What more could anyone ask?

To draw a salary. "Like many people with disabilities," Sunny says, "I can't get medical insurance. The only thing I can get is Medicare and Medicaid. That means I can't have a salary. To keep my benefits, I have no choice. It's kind of sad, really, because I can never do anything to be successful. But I could be in a nursing home -- so I have a lot to be thankful for."

His advice for new vent users: "The No. 1 thing you need to do is not buy into the mentality that once you go on a ventilator, you're terminal, and all they'll do is unplug it and you'll die." And it's not a slippery slope to oblivion? "Actually, the opposite is true," he says. "You get stronger and healthier if you're breathing properly."

He feels that vent users are living at the right time. "Quality of life, medically speaking, is the best it's ever been. The ability to live an independent life -- even on a ventilator -- is now available not just for wealthy people but for almost anybody. And the equipment is readily available to keep that quality high."

For information about the Porta-Lung, call 303 / 288-7575.

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"I felt good about the decision, and I have ever since."

James Gassen, 28 Duchenne muscular dystrophy Oak Park, Ill.

Jim Gassen didn't have doubts before getting his vent. "I made the decision about 10 years ago for the simple reason that I wanted to keep living," he says. And MD was pushing him: "Right before I went on the vent, I was sleeping all the time and I had elevated carbon dioxide levels."

He did have fleeting doubts after his tracheostomy. "I was very discouraged," he admits. "I couldn't talk, and there were other problems from the surgery. For awhile, I thought maybe I'd made a mistake. But when I was able to talk and began feeling better, I realized I hadn't made a mistake. I felt good about the decision, and I have ever since."

He's had his vent for three years now -- 24 hours a day -- and keeps an active schedule of disability rights advocacy. He's on the board of an independent living center and a camp for adults with disabilities, promotes ADA compliance, and teaches independent living skills workshops.

Jim counsels prospective vent users, but his own post-trach experience leads him to avoid cheerleading: "It took a couple of months for me to get up in the wheelchair. I had convinced myself that I'd be back at work in a month, so I was pretty naive. It's not a quick bounce back.

"It's important to tell somebody that it's not a bed of roses. But if somebody makes that choice, I encourage them."

MISSION POSSIBLE?

Converting to Noninvasive Ventilation

By Jean Dobbs

Dr. John Bach is on a mission: to close unnecessary tracheostomies. It may sound like an unusual calling, but Bach expresses complete faith in noninvasive ventilation for most people with spinal cord injury, post-polio sequelae or neuromuscular diseases.

"There are very few people who actually need to be trached," says Bach, a physiatrist who directs the Center for Ventilation Management Alternatives at University Hospital in Newark and Kessler Institute in West Orange, N.J.

Despite widespread dissemination of his pulmonary research findings, Bach says that recruiting followers in the medical community has been slow. "Nobody wants trach tubes," he says, "but doctors haven't always offered options." Fortunately, this is changing, he adds, and now more hospitals are trying to avoid tracheostomies. "There is a tremendous trend toward noninvasive ventilation as an initial treatment," he explains, but only a few doctors in the country convert people to other methods after they already have a trach.

Last year, Bach approached Christopher Reeve about switching to a Pneumobelt and mouthpiece ventilation, but the actor didn't want to do it. Why?

"It does require a lot of work to learn the new techniques, and I had the impression he was afraid of failing," Bach says. "Also, he still expects to recover. So he's thinking, `What difference does this intermediate action make if I'm going to be walking and breathing on my own?'

"It's unfortunate for other people with spinal cord injury whose doctors don't know about taking out trach tubes," Bach adds. "His example could have saved a lot of people a lot of complications."

The Complications

People with tracheostomies commonly report trouble with infections at the trach site, trachea damage, obstruction of the trachea, lung infections and pneumonia.

Bradley Smith, a 42-year-old vent user with ALS, battled a terrible case of pneumonia after his doctor recommended a tracheostomy. Smith, a Virginia-based counter-terrorism specialist for the State Department, says that one problem was that the vent life happened so quickly that he couldn't make an informed decision about equipment.

When his progressive condition started to cause breathing problems, Smith went to his local doctor for tests. His doctor said he needed a trach, to which Smith replied he wanted a second opinion from his neurologist in a couple of weeks. The doctor said, "You don't have a couple of weeks."

Smith got the trach. "It was a disaster," he recalls. He immediately came down with pneumonia and spent a month in the hospital, causing him to lose much of his remaining muscular ability. "Secretions were a big problem, and I was totally dependent because of the need for frequent suctioning."

Eventually though, he heard about Bach and drove to New Jersey to consult with him. "He said, `You don't need a trach. Here's an option for you.'"

The Options

Smith now uses a mouthpiece by day and nasal ventilation by night. This is a common arrangement, as the mouthpiece is more aesthetically pleasing for waking interaction but tends to fall out during sleep. A nasal mask with a good seal maintains ventilation all night, but most find it too distracting for day use.

One problem that may occur is facial irritation from the nighttime mask. Anne Marie Taddeucci, a 20-year-old C1-2 quad in Elmhurst, N.Y., switched to noninvasive ventilation after three months with a tracheostomy, but found the nighttime nasal mask caused irritation and scarring. She now uses mouth ventilation at night, but wonders if the mask's pressure is moving her teeth. The best idea, says Bach, is to have a mask custom-designed to fit the contours of your face.

A piece of gear that can replace or augment mouthpiece ventilation is the Pneumobelt, a positive pressure corset with a bladder inside that inflates and deflates, pushing the diaphragm up and down. Again, another technique is needed at night because the Pneumobelt isn't effective in the prone position.

One of the biggest changes that follows removal of the trach tube is that secretions no longer need daily attention. According to Lou Saporito, director of respiratory services for the Center, a trach tube actually stimulates secretions that must be suctioned. Ironically, the suctioning itself stimulates more secretions, locking people into a schedule of care that greatly reduces independence.

The average trached vent user, says Bach, needs eight suctions a day -- a job that legally must be performed by a licensed health care professional or family member (i.e., not an attendant). Because home nursing care is extremely expensive and most family members don't have time to do trach care, many people with tracheostomies must live in nursing homes. "If you can get trach tubes out, you can help get people home," Bach says.

And their health improves. Taddeucci, for instance, hasn't had a single infection or cold in the two years since she made the switch.

Smith says that when he does get sick, he now can clear his lungs independently with a machine called the In-Exsufflator, by the J.H. Emerson Company. This device, modeled after the polio-era Cof-flator, dislodges secretions by applying positive pressure to the airway and then quickly reversing the flow, causing a cough.

This cough machine has gained a following among many who've switched to noninvasive ventilation, but manually assisted coughing may be sufficient if you don't have scoliosis, says Bach.

Finally, says Bach, quality of life can't be ignored when discussing noninvasive ventilator options. In a 1993 Chest article, he reported that among 168 vent users who switched from tracheostomy to noninvasive methods, 100 percent preferred the latter. Most cited health reasons, but also significant were increased ability to talk, swallow and taste.

"You can't taste or smell when you have a trach because the air isn't passing through the nose," Bach explains. "Eighty percent of taste is smell. If you close your nose, you can't tell the difference between bananas and mustard."

The point, he emphasizes, is to return to life with as much independence and opportunity for joy as possible. "Removing the trach tube should be a part of rehabilitation," he says. "If it's not, you're not being rehabilitated."

Keeping the Trach

Not everyone agrees with Dr. John Bach. Many people with tracheostomies don't experience frequent complications and say, "If it ain't broke, don't fix it."

Jerry Daniel, a 49-year-old polio quad who runs a vent service business out of Vancouver, Wash., says: "The debate over the trach versus [noninvasive methods] has gotten out of proportion because people make it sound like a trach is the worst thing in the world."

Daniel, who has had a trach since he was 10, is comfortable with suctioning and prefers it to the cough machine, which he tried when he first had polio.

Steve Lambert, 30, has taken yet another approach. After he shattered seven cervical vertebrae in a motorcycle accident at 16, he had a tracheostomy, but later discovered he could use a Pneumobelt. He opted to wear it about 18 hours a day and attach the trach tube at night.

"The main reason for the Pneumobelt is aesthetics," he says. "I cover the hole with a bandanna during the day. That's how I want to present myself to the public."

Lambert, who works for the Trauma Foundation out of San Francisco General Hospital, says his technique has also kept him very healthy: He hasn't been hospitalized or suctioned in 13 years.

Manufacturers

Aequitron Medical (Jerry Daniel's vent maker; invasive and noninvasive positive pressure products), 14800 28th Ave. N., Minneapolis, MN 55447; 800/497-4979. Healthdyne Technologies (noninvasive positive pressure products), 1850 Parkway Place, Marietta, GA 30067; 800/421-8754. J.H. Emerson Co. (cough machine and negative pressure products) 22 Cottage Park Ave., Cambridge, MA 02140; 800/252-1414. Lifecare International (Steve Lambert's vent maker; invasive and noninvasive positive pressure products), 1401 W. 122nd Ave., Westminster, CO 80234; 800/669-9234. Newport Medical Instruments (invasive and noninvasive positive pressure products), 760 W. 16th St., Building M, Costa Mesa, CA 92627; 800/451-3111. Respironics (noninvasive positive pressure products), 1001 Murry Ridge, Murryville, PA 15668-8550; 800/345-6443.

Resources

International Ventilator Users Network: publishes bi-annual newsletter ($12/year); provides information and referrals. 4201 Lindell Blvd., 110, St. Louis, MO 63108-2915; 314/534-0475; E- mail: gini_intl@msn.com Pulmonary Rehabilitation: The Obstructive and Paralytic Conditions, by Dr. John Bach. This $69.95 book is geared toward medical professionals but easily understandable by lay readers, according to Bach. Hanley and Belfus, 210 S. 13th St., Philadelphia, PA 19107; 800/962-1892.