Ultimately our trip for my surgeries was successful, though not as
successful as hoped.
The primary successes (notable thus far) were: replacing my cardiac
pacemaker, getting x-rays of my chest and neck (that I was given to
view on CD) and having actual outpatient surgery for my procedures
(no overnight stay required, which limits my chances for infection).
Missing from that success list is implementation of the Diaphragm
Pacing System (DPS). Even when inside my chest, with the electrodes
placed on my diaphragm, my diaphragm wouldn't fire when stimulated
by the DPS. My surgeon, Dr. Michael Cheatham, tried everything --
even calling DPS inventor Dr. Raymond Onders (who trained Dr.
Cheatham to do the DPS) for additional suggestions. It wasn't meant
Though I could have received several benefits from the DPS, I stand
by my statement that I already have a high quality of life and I'm
not limited by the vent in the most important ways: speech quality
For a quadriplegic like me, my ability to talk well is of extreme
importance. And if you've heard me talk in person or via phone, I
think you'll agree that I speak well and typically clearly, at an
appropriate volume (when well hydrated) and with little pause
between breaths (thanks to a speaking valve, and due to the ability to initiate another breath
sooner than programmed and also receiving fairly large breaths).
With the DPS, I was concerned about matching that quality because
breaths cannot be initiated with the DPS and the size of breath is
smaller than what I receive via vent (quite possibly 30% smaller for
me). That could have been mitigated by increasing my breath rate on
the DPS, but only doing it could answer that question.
Also, my lack of significant respiratory infections for a vent user
is fairly uncommon, and is represented by zero respiratory-related
hospitalizations in the 13.5 years since I was discharged from my
initial hospitalizations and rehab (knock on wood and thank you
God). I'm certainly not saying that my number of infections would
have increased on the DPS (it could have, because I'm breathing
through 3 filters on the vent, and would have one filter at most on
the DPS) but it's hard to beat zero in 13.5 years.
I'm not trying to disparage the DPS; I have two friends in
particular who are benefiting significantly from the DPS, and I
wanted to try it and potentially benefit from it. But I don't want
anyone reading this to think that life with a ventilator is a
If my diaphragm would have fired when stimulated by the DPS, I
would've continued to embrace the challenge of becoming a successful
DPS user. But that is/was a very significant challenge (especially
when considering everything altogether) that included learning and
teaching my caregivers different ways of providing for my needs (for
example, it would've placed a port on my stomach where the DPS
connected that would've required care, and careful bathing around,
etc). Point being, I think that we (as a team) are already good at
life with a ventilator, and largely see it as not that big of a
If interested, I could expand on a lot of these points and others.
No worries and God bless!