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    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.

    Comment


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

      Tracey

      Comment


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

        Comment


          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.

          Comment


            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.

            Comment


              Hi Linda,

              Doesn't Dave have a CoughAssist or am I accidentally confusing y'all with other people?

              The CoughAssist can help inflate his lung. It's also good for helping to prevent infections like bronchitis because it can give an extra big breath that reaches everywhere in the lungs, and thus helps to expel any secretions that are there (which would otherwise grow bugs and become serious infections like bronchitis if the secretions aren't eliminated in a timely manner).

              I don't understand about the big "whoosh" and the fatigue associated with the PMV. Did I mention previously that when using the PMV, when I'm relaxing and not talking, I usually exhale some air WHILE the vent is giving me a breath?

              I'm very comfortable on the vent & PMV and would like for Dave (and others in need) to be too. I'm trying to understand his situation.

              So Dave only uses the PMV when he's breathing off the vent, correct? And he breathes independently, not with the DPS, correct? Just checking.

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

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

              Comment


                To clarify about being uncomfortable and dizzy when trying to get used to having the cuff deflated... that's mostly due to the increased volume of breath given by the ventilator. The extra air that is now being exhaled can easily make the person dizzy.

                I can elaborate if desired.
                Wheelchair users -- even high-level quads... WANNA BOWL?

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

                Comment


                  I'm confused - isn't a PMV inserted as part of the vent circuit? How can it be used when one is off the vent? Or is a PMV different from a speaking valve?

                  Comment


                    Originally posted by Scaper1 View Post
                    I'm confused - isn't a PMV inserted as part of the vent circuit? How can it be used when one is off the vent? Or is a PMV different from a speaking valve?
                    A PMV (Passy Muir speaking Valve) can be used both inline (inside a vent circuit) and offline (fit directly over a trach/canula).

                    Good question Scaper1. It was years before I knew a PMV could be used offline.

                    This thread is/was originally about DPS use, and DPS users typically either plug their trach when they are pacing, or fit a PMV over their trach. The PMV makes it a little easier to breathe (and still talk) because you can take air in through the trach with the PMV, but the PMV seals off the exhale direction and, thus, allows the user to speak with the breath (if the trach is completely open, essentially all air goes in and out through it and no air passes one's vocal chords, so speech isn't possible).

                    I was unsuccessful as a DPS user (my diaphragm wouldn't fire, most likely because I'm truly a complete injury at C1-2 and my diaphragm is receiving zero innervation per my surgeon) but I can breathe for over 4.5 hours by doing a mini-situp, i.e. using my neck muscles to pull my chin down and chest up to take in air. I do that pretty easily through the open trach/canula. It's a little more difficult with the PMV on, but I can talk, so it's worth it for short periods, if/when necessary.

                    I can keep my oxygen saturation (O2 sats) up pretty well with the PMV on, but I don't know how effectively my body gets rid of carbon dioxide when I breathe with the PMV on. The non-specific way to tell if one isn't expelling CO2 well enough is the person's face will get red. Without the PMV on, I do effectively expel CO2 and that's when I can breathe for extended periods of time. That's a nice "safety net" to have, and I think most quads can access their neck muscles so they too should be able to develop the ability, if they aren't a candidate for the DPS.

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

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

                    Comment


                      Originally posted by trainman View Post
                      I use a split 2x2 IV sponge for my trach. It works well in absorbing any drainage I have during the day, but is small and neat.
                      We change my trach dressing twice a day. When I'm going to bed, we use a 4x4. When I'm getting up, we use a 2x2. The 2x2 looks better.

                      The best place I've seen to buy 2x2s and 4x4s (by the box) is here:

                      http://www.jrsmedical.com/CORE_WOUND...2/product.aspx

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

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

                      Comment


                        Originally posted by Scaper1 View Post
                        ... Just keep the stoma clean with sterile Q-tips and some kind of cleaner. I've been using Vetericyn.
                        At the risk of posting too often on one thread...

                        We clean around my trach with Q-Tips using a saline & peroxide solution, dry it with a Q-Tip, then use another Q-Tip to put "Bag Balm" around my trach:

                        http://www.bagbalm.com/

                        One of my first nurses (she was really sharp) called Bag Balm somewhat of a cure-all for skin issues. Basically, it is petroleum jelly (Vaseline) with sulfur in it (so I was told, anyway).

                        You can get it in drugstores, but I think it's a little cheaper in pet stores (cheapest price I've seen is about $5 a can; try the pet section at Wal-Mart). I saw on Country Music Television that Shania Twain puts it on her lips! (I swear I saw that, but would love for someone to corroborate that.)

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

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

                        Comment


                          Okay Bill, I think that's getting completely caught up in one night. In one post, you said "when you aren't talking," so just when you sleep I guess.

                          Yes, the PMV is made for inline tube use as well as just on the trach itself. If you go to Passy Muir's web site, the kid pictured on the home page is using the stand-alone style.

                          Bill, you said you find it easier to breath "bare trach" as I say, but I'm the opposite. When I was self-breathing regularly, I found it best to breath with the trach plugged. However, I think I use my neck muscles more than some people. I have a few videos on YouTube if anyone is interested. Now that I am pacing, I have found the same to be true.

                          Breathing through the PMV is much more difficult than just plugging my trach. I have had a few episodes where it felt like my throat was constricting and I changed to the PMV to see if it would help. Unfortunately, the resistance increased substantially and was not pleasant. Breathing bare trach causes an increase in flimm quickly, so I avoid that method.

                          As always, there are about as many different techniques as there are people who use them. Finding the right combination that works for you can be difficult, but I agree with staying with what works.
                          C2/3 quad since February 20, 1985.

                          Comment


                            Hey Bill, Dave only uses the PMV when he is off the vent. We have never used it on the vent. We use the cough assist a few times a day. He sleeps with the vent on with a volume of 1000.
                            The reasoning behind this is that it gives him a big breath to inflate the lungs.
                            When he left rehab he did not have a trach. 3 months later he was in the hospital for 2 months with pneumonia and we nearly lost him. That is when it was decided he should keep the trach so we can suction the nasty stuff out. Quad coughing alone was not doing it.
                            He could not tolerate the PMV and was voiceless from Aug until late Nov 09 when we went to Craig for a re eval. That is where they switched him for the Shiley to the Bivona and he could tolerate the PMV and that is where they prescribed the cough assist. He has one paralyzed vocal cord, but has a fairly strong voice on good days.
                            He feels like he is suffocating with the red cap on the trach.
                            Sometimes he goes on the vent in the afternoon to rest. His 02 is usually in the mod to high 90s.
                            I'm no expert on this and feel like we ar eplaying it by ear much of the time.
                            We don't have a decent pulmonolgist in town, but found a great ENT.

                            Comment


                              See, this is all new to me. I'm a complete C1-C2 too, with very weak neck muscles and zero independent breathing time, but by some small miracle a very good candidate for DPS, which I had implanted about 6 months post-injury way back in 1991. Diaphragmatic pacers were still mostly unheard of then, but my grandpa was a well-connected doctor and my dad's a bio-medical engineer, and they weren't taking no for an answer. Anyway, I've used the pacer 16-18 hours a day ever since, often going a few days at a time, but this is the first I've heard of using anything but a simple cork to block the trach while off the vent. I'm wondering what possible reason there could be to use a big bulky PMV when you can just be taking air in and out through your natural airways?

                              Comment


                                Okay all a vent question...

                                We as you all know are working on getting Dad's cuff down and have stopped doing pacer trials (well we do one a day about 30 minutes or so just to keep the diaphragm going) until we achieve this. I have adjusted his vent settings to 1200 -1250 Volume (normally at 900) left the peep at 5 (no PMV yet and he can vocalize a bit better with the peep) but I had to turn the sensitivity up to 2 or he triggers at 27 -30 breaths/minute. I'm worried this will tire him considerably more...does changing the sensitivity make much difference to you? Your fatigue level? He breaths at 12 -18 with it this way (vent set at 12, pacer at 16 - going in the background). Your thoughts?

                                Tracey

                                ps just got a capnography machine to see if his CO2 is off. Sats fine 94 -95% on 3/4L of oxygen (same as without it).

                                Comment

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