I have had a trach since 1982 because of the progression of my
disability, Muscular Dystrophy. My breathing muscles weakened to the
point where I was collecting excess CO2, causing me great fatigue,
elavated blood pressure, and impaired mental function (loss of memory,
confusion, etc).
When my pulmonologist told me the only way to save my life was to
trach me and hook me up to a vent, I was devastated. I thought my life
was over! Eventually, I realized my trach was my best friend. However,
it took awhile to progress to this viewpoint.
For a time in 1983, I was able to "wean" myself off the trach.
My doctor even sewed up my throart. My respiratory condition had
improved to the point where I only needed my vent while I slept at night.
Instead of using a positive pressure vent with a trach, I started using
a negative pressure machine with a curass shell. This system worked well
for about ten months when I contracted pneumonia. Then all hell broke
loose!
My pneumonia progressed very quickly, partly because my breathing
muscles were still too weak to effectively cough the mucous loose. One
afternoon, I passed out and had to be taken "code blue" to the hospital
by ambulance. After one month in ICU, I had to be trached again. The
trach once again became a life-saver because it allowed the easy removal
(suctioning) of the infectious mucous. I was released, completly
recovered, with my trach and ventilator. I have not had pneumonia, or
severe bronchitis since (fifteen years). My trach allows easy access to
my lungs for removal of any congestion before it becomes problematic.
After all these years, I completely accept my trach. I don't
feel subconsious or "burdened" by it. Most times, I take it completely
for granted and don't consiously know its there. My system no longer
rejects it and generates practically no mucous. Many days, I only need
suctioning once or twice. I travel all over town alone with little fear
of getting "clogged up". My cuffless trach (Shiley) allows me to cough
up any offending secretions, should any occur.
I am definately am in favor of "invasive" (bad term!)
ventilation. Maybe, if the curass shell had worked for me, I would feel
differently. Incidently, my brother Mark (also with MD) has used a
curass shell successfully for years and his opinion is just the opposite
of mine. Oh well!
Blane Beckwith
Berkeley, CA
On Tue, 24 Feb 1998 19:45:12 +0100 "Quiroga" <quiroga(AT)airastur.es>
writes:
>
>
> Hi everybody:
>
> As you know I´m a doctor working in Intensive Care and also in
>Home
>Mechanical Ventilation. One of the things I´m very interested in is
>what
>you think about tracheostomy. I know there are many people that refuse
>trach. perhaps because they are not well informed about it. Dr. Bach
>from
>New Jersey (there are people here in this list that know him) thinks
>that
>trach. can be avoided by means of different types of nononvasive
>ventilatory support, e.g. abdominal belt, nasal and face mask
>ventilation,
>glossopharingeal breathing, etc. Personally I think the possibility of
>maninteining non invasive ventilatory support in a 24 hours basis
>relies a
>lot on a good physiotherapy (for example to get a good clearance of
>pulmonary secretions) and that´s not always possible so in many cases
>we
>have to perform the trach. when ventilatory dependence arrises. But in
>the
>view of what I´ve heard from vent-users that have a trach. this seems
>to be
> not so bad. I would like to know your opinion about that, specially
>from
>people who have been previously using a noninvasive method of
>ventilatory
>support and finally had to be changed to trach. ventilation.
>
> I´m sure your opinion will be of great value for our better
>understanding
>of this problems so thanks in advance to all of you.
>
> Dr.J.M. Quiroga
> Intensive Care Unit
> Home Mechanical Ventilation Unit
> Hospital Central de Asturias
> Oviedo. SPAIN
>
>
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