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Thread: From Vent to Diaphragmatic Pacing System (DPS)...

  1. #101
    Anyone heard from Bill lately? He normal has great wisdom to share on these things and I haven't heard from him in a while.

  2. #102
    I hear from him regularly. As he said a few posts back, the DPS didn't work for him. So he may not be monitoring this very much.
    C2/3 quad since February 20, 1985.

  3. #103
    Quote Originally Posted by trainman View Post
    I hear from him regularly. As he said a few posts back, the DPS didn't work for him. So he may not be monitoring this very much.
    Oh, that is too bad. Tell him hello.
    When I am using the cough assist I sometimes wish he were in the room so I could ask him questions.

  4. #104

  5. #105
    Senior Member
    Join Date
    May 2009
    Location
    portland oregon
    Posts
    128

    Bill

    Bill was so helpful to me during my early days on the vent.I do miss his words of wisdom.

    Fortunately ,I'm doing great.I've been evaluated for the DPS.MD said i'm an excellent candidate.Just waiting on scheduling.

  6. #106
    Quote Originally Posted by nancygail View Post
    Bill was so helpful to me during my early days on the vent.I do miss his words of wisdom.

    Fortunately ,I'm doing great.I've been evaluated for the DPS.MD said i'm an excellent candidate.Just waiting on scheduling.
    That is excellent news Nancygail. Please keep us posted.

  7. #107
    Oh wow nancygail! That's awesome...let us know how it goes!

    Tracey

  8. #108
    Great to hear Nancygail! It is much different than the vent, keep us posted.
    C2/3 quad since February 20, 1985.

  9. #109
    Trainman is correct, I wasn't following this thread as closely as I should've. My apologies.

    Regarding cuff deflation tolerance, it wasn't easy for me. Once I was stable enough to begin trying it, I'd say we worked up to about an hour a day over the first month. To be clear, I'd get dizzy and uncomfortable and only be able to tolerate it for about an hour a day, by the end of the first month.

    However, I was discharged from Rehab shortly thereafter, and when I came home -- I NEEDED to talk -- to train nurses and caregivers, and to communicate my needs. My need to talk was greater than my discomfort, and within a week of being home, my cuff was deflated 24/7.

    One thing that helped significantly was to not allow me to sit and think about the discomfort. Watch a movie, have active conversation, do something to distract from the change. The more time goes by, the more comfortable one should get.

    I didn't discover a PMV until after I was already comfortable with the cuff deflated fulltime, so I don't know if it can or would be helpful to use while adjusting to cuff deflation. But my guess is yes, because it enables significantly better speech, and having the ability to talk well is a benefit and incentive to have the cuff deflated. Plus it would allow for better conversation which can help the time pass more quickly.

    The PMV did help reduce my secretions. The PMV has a "drying effect" on one's airway if the HME (Heat and Moisture Exchange unit, a.k.a. artificial nose) is below the PMV on the vent circuit (this assumes one has an HME instead of heated circuits or another setup) because there's no two-way "inhale-exhale" action through the vent circuit and HME. The PMV allows air in one way, and forces all exhale out one's mouth and/or nose, which doesn't allow return heat (back down the vent circuit via exhale) to produce the moisture and condensation with the HME.

    I don't know if I explained the above paragraph very well, but the result of that is a more dry airway and fewer secretions.

    If one is able to tolerate the cuff being deflated 24/7 for several months without needing or wanting to inflate it, then I highly recommend switching to a cuffless-style trach as doing so also significantly helped reduce my secretions and also made trach changes MUCH easier.

    I'm not familiar with any other trachs besides cuff and cuffless Shileys. Part of me is interested in trying a Bivona, but the other part says, "if it ain't broke, don't fix it." The cuffless Shiley (DCFS Size 8) works well for me.

    On a semi-related side note, you might be interested in reading something I titled, "A New Record and the Real Meaning of Handicap Zero" which is here:

    http://www.wheelchairbowlingrecords....Scoresheet.htm

    - Bill :-)
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

  10. #110
    Hey Bill. Good to hear from you. Dave said for himself that the Binova was like night and day.
    But like you said, if it ain't broke don't fix it.
    We inflate his cuff when he goes on the vent. He uses the vent about 12 hours and then during the day if he needs a rest.
    The trouble lately is that many days he does not have enough strength to keep the PM on for long. When he asks me to take it off a "whoosh" of air comes out.
    Then he ends up having more secretions.......
    He is just recovering from a bout of bronchitis and the chest X Ray showed the lower left lobe of his lung being flat-not "sticky" but possibly scar tissue-it is not inflating because is the weak side of his diaphram. He goes back in a week for another X Ray and if no change see a pulmonologist. This is an issue because the one we saw did not understand SCI at all and asked why he was not in a NH.

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