For more on my surgeries, see this this blog entry.
Ultimately our trip for my surgeries was successful, though not as successful as hoped.
The primary successes from my surgeries 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 limited my chances for infection; I just had my three-weeks post-surgery follow-up appointments, and I’ve healed well with no infections — thank you God!).
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 to be.
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 and infections.
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 necessarily bad.
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 deal.
If interested, I could expand on a lot of these points and others.
No worries and God bless!
Bill Miller :-)
C1-2 Quadriplegic with a 221 High Bowling Game
Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT
Business website: http://www.ikanbowler.com
Personal website: http://www.lookmomnohands.net