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[Image] COVER STORY
[Image]
THE VENT LIFE
Who Says You're Out of the Game?
[Image] 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.
---------------------------------------------
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---------------------------------------------
>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.
---------------------------------------------
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---------------------------------------------
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.
---------------------------------------------
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---------------------------------------------
New Mobility
Talks to Vent Users
By Barry Corbet
---------------
"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."
---------------
"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."
---------------
"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.
---------------
"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."
---------------
"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(AT)clearnet.net.
---------------
"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."
---------------
"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.
---------------
"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."
---------------------------------------------
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---------------------------------------------
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."
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>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(AT)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.
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