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    Also what pressures are you all normally running, especially with cuff up although down info is much appreciated too? Dad runs 32 -36 with cuff up and 30 cuff down on a number 7 bivona.

    Comment


      Originally posted by trainman View Post
      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.
      Roger that Trainman.

      I find it interesting that it was/is easier for you to breathe with the trach plugged, instead of open or with the PMV. Either way, you always have your mouth and nose, but adding a "port" via the trach gives a third way to bring in air. I would think three openings would be easier to breathe through than two openings. Then again, if one method increases your secretions, obviously that isn't desirable.

      I certainly agree with you overall -- do whatever works best for the person.
      Wheelchair users -- even high-level quads... WANNA BOWL?

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

      Comment


        Originally posted by LindaT View Post
        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.
        Hi Linda,

        Why not see if you can fit Dave's PMV near the top of his vent circuit?

        If his circuit is like mine, the PMV can replace the top coupling/adapter and the blue-elbow adapter fits into it and connects the circuit to his trach. My PMV is the teal-colored piece in this picture:

        http://www.lookmomnohands.net/Life_with_an_SCI.htm

        I would try it just so he can experience it -- he may need to exhale some air while the vent gives him a breath.

        - 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
          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?
          Scaper1,

          It's probably best to breathe through one's natural airways, however, I found that to be more difficult than breathing with the trach open. But the open trach doesn't allow for speech, so it's really a technique best for emergency breathing (e.g. if the vent is disconnected, or has no power, and nobody is available to ambu bag, etc) in my opinion.

          The PMV is similar to open trach breathing, but offers some resistance compared to the open trach. However, it enables speech, which is a huge plus if the person can breathe comfortably with it on.

          But plugging the trach is best if the person can breathe well like that.
          Wheelchair users -- even high-level quads... WANNA BOWL?

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

          Comment


            Originally posted by One-of-a-kind View Post
            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).
            Tracey,

            What vent mode is your Dad on -- SIMV, Assist Control, or something else?

            I'm on SIMV -- Synchronized Intermittent Mandatory Ventilation (I think ).

            That means I will receive AT LEAST the number of set breaths (my rate is 13 BPM at 1.0 liter volume, I think -- it's been a while since I checked or changed it). SIMV also allows the user to initiate a limited number of breaths. I can initiate roughly four consecutive breaths (i.e. shorten the pause by doing the "chin-down, chest-up" subtle pull to start the next breath sooner) but after those four consecutive shortened-breaths, the vent will actually delay my next breath -- longer than the standard pause -- because it's apparently trying to not let me hyperventilate myself. I don't know if that info helps or not, but I thought it was unbelievably cool when I discovered that!

            I believe Assist Control will allow unlimited breaths to be initiated.

            Sensitivity wise, I believe mine is set just barely negative (less than zero). Early on, we discovered that when it was a positive number, the vent would "stack" several breaths quickly and then have a more lengthy pause, instead of delivering them at regular intervals.

            I don't know what peep is or what it does. Can you or someone educate me?

            - 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 One-of-a-kind View Post
              Also what pressures are you all normally running, especially with cuff up although down info is much appreciated too? Dad runs 32 -36 with cuff up and 30 cuff down on a number 7 bivona.
              I'm not an expert, but those pressures sound reasonable. My caregiver said my pressures currently range from about 25-30. I have no cuff and am using a PMV and Shiley size 8.

              My LP-10 has a "breathing effort" setting that I suppose is sensitivity? That is what's set just below zero.
              Wheelchair users -- even high-level quads... WANNA BOWL?

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

              Comment


                Thanks Bill!! Really helpful....! Dad is on AC (assist control) and his rate is set at 10 (was 12) His sensitivity was 1 to 2, but 1 works better and I feel better with it given your experience. I will keep trying to get the cuff down, but had to stop the medicine we were using because it gave him urinary retention - he's not that happy having to have intermittent catheters but we're hoping he recovers now that we've stopped it. Interestingly his secretions aren't all that increased - again I think it really is a trach issue and I'm happy to say we are waiting on yet another (properly measured we hope!) custom trach.

                Thanks for all the help...means a lot to me and to Dad!

                Tracey

                Comment


                  Tracey, vent pressures depend very largely on the type of tubing and connectors that are used, so it's difficult to compare. The Pearson locks that are used in the Vancouver area require a fairly narrow connector that generates higher pressures on its own than a wider connector would.

                  The single best change to my vent settings was to increase the inhale times. It depends what type of vent you use, but most are adjustable. A longer inhale provides a much deeper and more reassuring kind of breath.
                  Last edited by Scaper1; 1 Jun 2011, 6:05 PM.

                  Comment


                    Hey Bill....good to hear from you again!

                    PEEP -gives you a little bit of positive pressure when you exhale .It helps keep the alveoli open.I personally don't use it.My PEEP is at zero.

                    My airway pressure tends to match the amount of pressure support the vent is set at i.e. pressure support of 10 is what my vent will indicate...if I have more secretions or if i'm talking it goes up a little bit.

                    Also,I'm surprised you are using an LP-10....do you have access to one of the LTV models.They are much smaller and don't take up too much space.Christopher reeves used one. .....

                    Comment


                      Thank you for the info sharing all.

                      NancyGail, I started on LP-10 vents and (knock on wood and thank you God) they have been SO RELIABLE, that we haven't bothered to change. After about 12 years roughly, one of my LP-10s started to do odd things (not working normally) and was replaced, but it's replacement and my other original LP-10 are both working beautifully (the other old one is bedside, which is almost entirely on AC power).

                      I am quite comfortable with them, so unless they fail and cannot be replaced by other LP-10s, I don't anticipate changing. That said, another reason we opted for a replacement LP-10 over an LTV was because we thought I might eventually use the DPS fulltime and not need ventilators. But now we know that won't work for me, so perhaps if one of these LP-10s fail, I will switch to an LTV since we're looking at a longer term scenario. No worries...

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

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

                      Comment


                        I use a PLV-100, Reeve used the PLV-200, made by Resperonics. They are very quiet and that was the main reason my parents went with them (I was injured at age 3). The LTVs are nice for size, but you can't hear yourself think over them.

                        I'm pacing all day now, while I'm awake anyway, so a chair vent is not really needed anymore. However, I have heard many people complain about the noise of the LTV, especially after hearing mine. I have slept in a room with 2-3 LTVs going a few beds down and it is not a pleasant experience.
                        C2/3 quad since February 20, 1985.

                        Comment


                          Good info, thanks Joel -- and CONGRATULATIONS on pacing all day! That's excellent news.

                          How do you rate your speech quality when pacing as compared to on the vent? And your trach is capped when you're on the DPS?

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

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

                          Comment


                            Yes, my trach is capped while pacing and often under my shirt as in my avatar.

                            Speech quality is my main complaint with the system. Having to stop every four seconds to breathe in is annoying and can make speech difficult. I'm learning to time the breaks to sound natural, but it doesn't work in all situations.
                            C2/3 quad since February 20, 1985.

                            Comment


                              yea i agree about the noise from the LTV....my boyfriend throws his motorcycle jacket over mine to cut the noise down while we're watching movies..lololol

                              Good to hear that the DPS is working out for you TRAINMAN.The oregon clinic here in portland will be doing mine sometime after august.and THX to you Bill for letting me know about the clinic here in portland that performs the operation.

                              Comment


                                Trainman,

                                You said you traded in your first DPS unit and got one that gives a stronger shock to your diaphragm... did that improve your speech as compared to the first unit? Are you going to try an even stronger unit?

                                Just curious.
                                Wheelchair users -- even high-level quads... WANNA BOWL?

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

                                Comment

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