-> I have another question (well..I have really hundreds of questions
-> but i donīt want to overwhelm you). What do you think is the best way
-> to get phonation with the trach? A cuffless tube? Speaking valve
-> systems like Passy-Muir?
In my opinion, a cuffless trach is best. That's what I use
whenever I'm connected to my vent. When I'm off my vent (2-3 hours), I
use a Passy-Muir type of trach plug. I get off my vent everyday to
shower, dress, etc.
-> I have a question for Blane. You say that you use your vent by means
-> of a trach since 1982. Did you use before another form of ventilation
-> like face mask or mouth piece ventilation? I have a patient with SMA.
-> He is 17 years old and he started ventilation with a face mask 3
-> years ago. He goes very well (really he improved a lot since he
-> started ventilation) but I think in the future he probably will need
-> a trach. What do you think about talking this aspect to the patient,
-> not waiting to the last moment? I have a good
Prior to 1982, I didn't need any type of mechanical ventilation.
I did use oxygen during sleep. My first experience with vents was by
trach. I contracted severe pneumonia and pulmonary failure in '82, and
the doctors implanted a trach to save my life.
As for your patient with SMA, I suggest being candid and honest
with him. If you believe he may need a trach in the future it is best
if he grows to accept that fact now, so he isn't traumatized when (or
if) the time comes. Treat him like any other equal person. As a person
with a lifelong disability, I can tell you the one thing that alienates
disabled people and causes resentment for not only the medical
establishment, but most of able-bodied society as well, is being treated
like helpless children who are unable to determine what is best for us.
As equal persons, we should always be granted our rights of
self-determination.
I would also suggest when talking to this young man about the
possibility of having a trach in the future, that you stress what a
benefit a trach can really be. Far too often, a trach is falsely
regarded as a liability to a persons life and independence. In fact, a
trach is an enhancement to ones life. Mine sure has been to me. I have
as much freedom as I did before my trach. Please discourage this young
man from thinking a trach is some type of surrender or the beginning of
the end of his life. Nothing could be further from the truth. Good
luck!
Blane Beckwith :)
Berkeley, CA