Truth, Lies and
TrAcheoSTomIeS
comfortable, expensive, prevents talking or eating by mouth, and is a permanent change.
in amyotrophic lateral sclerosis). Several symptoms show that this is occurring, such as:
Let’s go through the daily routines of life with a trach:
Diane Huberty with her mother, Helen
by Diane Huberty
When neuromuscular disease weakens the muscles used for breathing, many people benefit greatly from noninvasive ventilation (NIV), which can add years of breathing support.
But when a tracheostomy and ventilator are suggested for better breathing, some people see NIV as “enough” and a trach and vent as somehow “too much.”
When a person’s overall quality of life is no longer acceptable, that’s certainly a valid choice. But a trach and vent shouldn’t be ruled out if quality of life problems are due in large part to respiratory problems.
A vent is simply a different, more powerful breathing machine. And a trach (a surgical incision through the neck into the trachea, into which a breathing tube is inserted) shouldn’t be rejected simply based on rumors that it’s complicated, time-consuming, problem-prone, ugly, un-
NIV assists breathing through face masks, nasal plugs or tubes to “sip” air, without the need for surgery. So why would anyone even consider going to a trach tube?
I successfully used NIV for six years, until a simple cold caused respiratory failure,
which led to a trach and vent. NIV can prove inadequate for a variety of other reasons:
n Facial features such as a
crooked nose or a deviated
septum can make finding
a mask that doesn't leak or
breathing entirely through
the nose difficult.
n NIV may aggravate sinus
problems or cause severe
abdominal distension.
n Some find anything on the
face claustrophobic.
n Facial weakness reduces
necessary jaw closure and
ability to use a mouthpiece.
n It can take months to find
the right mask or device
and get used to NIV, so if
knowledgeable support or
strong motivation is lack-
ing, NIV probably won't
work out.
n Frightening spells of suf-
focating or choking conges-
tion caused by thick mucus
and a poor cough. Breath
stacking, manual cough
assistance or a CoughAssist
device work very well for
some, but others find these
methods minimally effec-
tive.
n The hours the person needs
to use NIV increase from
overnight to most of the
day. Going out becomes
more difficult because
of equipment needs and
because wearing the mask
in public is unacceptable to
some.
n Because pressure-based
NIV can only assist breath-
ing, as a person’s breathing
capacity deteriorates, he
or she slides back into the
fatigue, poor appetite and
anxiety of pre-NIV days.
n Pneumonia or a simple
chest cold result in a respi-
ratory crisis, because NIV
is insufficient. NIV delivers
air based on pressure sens-
ing, so as the lungs become
more congested, the pres-
sure limit is reached more
quickly and less air is
delivered. A volume-based
vent (such as is used with a
trach) delivers a full breath
regardless of congestion.
Volume-based vents can be
used with NIV, but this is
rarely done, although the
practice is growing.
This part of trach care is done as part of bathing or washing up. Once-a-day cleaning is enough, unless there’s a lot of mucus drainage around the tube or recurring infections.
Gloves are optional, and finding a safe, easy-to-use and inexpensive cleaner for long-term use is easy: Buy soap. An antibiotic soap isn’t necessary.
The 2-by-2-inch gauze pads and cotton swabs used in the hospital can be replaced with clean washcloths. Ointment isn’t needed unless there’s redness or obvious infection.
A standard trach tube is actually a tube within a tube. The smaller one (inner cannula) is removed for cleaning daily.
Most people can follow a “clean” rather than “sterile” routine: disposable exam gloves, dish soap and tap water. Hydrogen peroxide helps with stubbornly thick mucus. The whole process isn’t necessary at all if you switch to a trach without an inner cannula!
Daily changing isn’t needed. Just change when damp or dirty.
The more common reason for switching, however, is that after successfully using NIV for some time, a person’s breathing muscles weaken further with progression of a severe neuromuscular disease (particularly
The Truth About Trachs
First, is a trach really more complicated and time-consuming?
Some patients need suctioning only two or three times a day, others a dozen or more. Everyone has good and bad days. Generally
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