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

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    Excellent news nancygail! Keep us posted.

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      Glad to hear you're doing well with it Nancygail. I found that I was extra sensitive to a lot of smells the first few months. Keep up the time off the vent and let us know how it goes.
      C2/3 quad since February 20, 1985.

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        That's great news NancyGail!

        Like Linda and Trainman, I too would like to know how you progress.

        God bless!
        Wheelchair users -- even high-level quads... WANNA BOWL?

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

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          It's good to know you are doing well! I was a bit worried for a time there. I'm back on Facebook, but I can't seem to find you. I think this is my link, and you can befriend me, or let me know how I can find you via pm.

          http://www.facebook.com/profile.php?...00000532232573

          Much love,

          Susanne
          I'm back on Facebook again--up and running!

          http://www.facebook.com/profile.php?...00000532232573

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            Thank You...you guys are awesome.If i hadn't found this forum I don't think I would've heard about the pacer.

            I love the results so far.I can go about 3-4 hrs off the vent and when i go back to the vent I'm only needing a little bit of pressure support(level 9).I can't wait to increase the stim level next week.

            I'm also pleasantly surprised at how small and compact the connector on my chest is.
            It sits on my right upper chest.It doesn't interfere with dressing ,bathing or transfers.I hardly know its there.

            I was admitted to the hospital at 1 monday and was discharged home by 1 on tuesday.I has some discomfort in my l shoulder after the procedure.There was no discomfort around my abdomen or chest.I had a alot of intense spasms through out my body during the first trails.So,my md decided to keep the stim at a low level for a week before increasing the stim.But as i said before even as this low level I can feel a difference.There is more oomph when i take a breath.

            The carecure community has been a great resource for information and support.

            THANK YOU!!!!!!!!!!

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              NancyGail, I'm glad you're having success! You've been injured 28 years -- I'm glad newer technology is helping to improve your quality of life. That's a blessing... thank you God!

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

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

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                I upped my stim level at the oregon clinic yesterday.All is going well.My pressure support is now at 8 with excellent volumes and I'm able to go off the vent.Next week I'll start doing 4 sessions a day for 1hour 10min. off the vent and I'll be returing to the oregon clinic in a couple of weeks to increase my stim level again.

                It's great working with the staff at the oregon clinic and Jeff from synapse.

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                  Great news! It's a life-changer, no doubt.

                  Have you noticed any improvements in taste and smell? Speech?

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                    Glad to hear Nancygail, you're at a big advantage being able to get adjustments easily. Is Jeff there every time you are? I was under the impression he mainly assisted with the implants and repair if needed. If my insurance approves, I'll be seeing him, or someone, for some maintenance soon.

                    Personally, speech quality decreased for me, but hopefully Nancygail's experience won't be the same.
                    C2/3 quad since February 20, 1985.

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                      Hey Joel,

                      Jeff assisted via a phonecall with Angie from the oregon clinic,while i was in the office.I would give them feedback and Jeff would advise Angie on the pacer adjustments over the phone.It went very smoothly I was in and out of the clinic in about 30 min.

                      Before i got the pacer I could barley talk on a pressure support of 10.Now i can talk easily at a pressure support of 8 and I'm maintaining good volumes 400-700cc.

                      Thanks again for all your advice.I've learned so much from you and Bill.There is no way this would've happened if I hadn't found you guys.......Thank You!

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                        I could not be happier for you nancygail.

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                          So exciting nancygail!!! Keep it up...Dad has actually progressed to the point where he is breathing on his own entirely without a pacer (up to 16 hours so far in a row!). Still a major issue with talking (and trying to learn sip and puff and/or chin drive) but we're working on it. This despite some major setbacks (surgery not related to his injury). It does work!!

                          Comment


                            Originally posted by One-of-a-kind View Post
                            So exciting nancygail!!! Keep it up...Dad has actually progressed to the point where he is breathing on his own entirely without a pacer (up to 16 hours so far in a row!). Still a major issue with talking (and trying to learn sip and puff and/or chin drive) but we're working on it. This despite some major setbacks (surgery not related to his injury). It does work!!
                            Good news from you and NancyGail both -- excellent!

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

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

                            Comment


                              Doing well with my pacer.I'm off for 3 hours twice a day.With no trach !I just cover my stoma site with gauze and tape.Tuesday I go in to have my settings increased to 12 mA.

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                                That's great to hear nancygail, but why are you going without the trach? If the trach is out too long, the stoma can collapse so that you can't get the trach back in. Also, I think it's much easier to talk with the trach in, just plugged.

                                For me, if I do get up to pacing 24/7, I plan to keep the trach as I use now or go to what's called a trach button. Suctioning through the trach is much better than by mouth and it's good to have a backup if something goes wrong with the pacer. Mine has had a short in it for the past four weeks and, due to insurance, it's taking a while to fix. Therefore, I've had to go back on the vent for a few times until we got the pacer working again.
                                C2/3 quad since February 20, 1985.

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