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    Hey mcwhlman, I'm an Avery veteran also. Celebrated my 30th year of pacing back in January.
    Did you have your surgery at Yale?

    Chuck

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      No Northwestern Memorial in Chicago

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        Originally posted by BillMiller823 View Post
        NancyGail, I wasn't trying to "reprimand" you when asking if your doctor approved of you having your trach out for 3 hours. I realize that those of us who need breathing assistance occasionally do things without asking our doctors (myself included). But this seems more important than some other choices we could make. I'm wondering if your doctor has a strong opinion. I'll try to remember to ask my ENT doctor about trach stomas the next time I see him.
        Hey Bill no worries.Yes my ENT Dr. shindler at OHSU here in oregon said taking it out a few hours a day would help prevent the formation of granulation tissue and it also gives the trachea a break from having a forgein body in there.My trach is a bivonna made from silcone.I just put a small dab of lube on it and it slides right in with no irritation.

        I find that it is easier to breath off the ventilator without the trach in because it frees up deadspace.It feels great.

        I've been changing out the complete trach everyday for 3 years ,since switching to a bivonna tts.My trach is single walled and I never put the cuff up.No infections for 3 years and my stoma /trachea are in pristine shape .There is no way you can completely clean up old secretions around the trach without taking it out and I have easier access to my upper trachea /stoma for cleaning.I use vetericyn vf around the stoma site.I'll send pics to your email address.

        Anyways,I wanted to update you on my DPS progress.

        I love it!......a big cyber hug to you and trainman for inspiring to go for it.I am presently off the vent 6-8 hours a day.Currently, I am at 15 mA and plan top progress to 25mA over the next month.

        Talking is easier for me...myBF says I sound more relaxed.I also find that I don't have to time my breathing to the pacer settings to get an increase in volume.It's interesting to watch the volume numbers on the vent.

        At a pressure support of 8 I'll pull about 200-300cc with no stim.....with stim my volume will jump up to 450-600cc.So,while using the pacer some of my breaths are unassisted and some are stimulated.You can tell just my watching the volume changes on the vent.I am set at 14 BPM.

        I love the convience of the pacer .It's very easy to maintain and doesn't interfer with my ADL's at all.

        Well I don't hog up this thread too much......you guys are life savers.

        THANK YOU

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          Originally posted by nancygail View Post
          Hey Bill no worries.Yes my ENT Dr. shindler at OHSU here in oregon said taking it out a few hours a day would help prevent the formation of granulation tissue and it also gives the trachea a break from having a forgein body in there.My trach is a bivonna made from silcone.I just put a small dab of lube on it and it slides right in with no irritation.

          I find that it is easier to breath off the ventilator without the trach in because it frees up deadspace.It feels great.

          I've been changing out the complete trach everyday for 3 years ,since switching to a bivonna tts.My trach is single walled and I never put the cuff up.No infections for 3 years and my stoma /trachea are in pristine shape .There is no way you can completely clean up old secretions around the trach without taking it out and I have easier access to my upper trachea /stoma for cleaning.I use vetericyn vf around the stoma site.I'll send pics to your email address.

          Anyways,I wanted to update you on my DPS progress.

          I love it!......a big cyber hug to you and trainman for inspiring to go for it.I am presently off the vent 6-8 hours a day.Currently, I am at 15 mA and plan top progress to 25mA over the next month.

          Talking is easier for me...myBF says I sound more relaxed.I also find that I don't have to time my breathing to the pacer settings to get an increase in volume.It's interesting to watch the volume numbers on the vent.

          At a pressure support of 8 I'll pull about 200-300cc with no stim.....with stim my volume will jump up to 450-600cc.So,while using the pacer some of my breaths are unassisted and some are stimulated.You can tell just my watching the volume changes on the vent.I am set at 14 BPM.

          I love the convience of the pacer .It's very easy to maintain and doesn't interfer with my ADL's at all.

          Well I don't hog up this thread too much......you guys are life savers.

          THANK YOU
          NancyGail,

          I'm glad you're having success. I may look at Bivona trachs in the future.

          Am I reading your info right... what you're saying is that your use of the DPS without the vent has enabled you to breathe easier when you're back on your vent, correct? You don't actually use the DPS with the vent at the same time do you? Because the part I bolded in your quote above sounds like you do, which is confusing.

          Just curious. It's great that you are comfortable with what you're doing. Being comfortable with whatever method of breathing one uses is no small blessing.
          Wheelchair users -- even high-level quads... WANNA BOWL?

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

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            dps

            Hey Bill,Yes I'll use the pacer with my vent(ltv 950) in cpap mode. In addition to breathing completely off the vent with a passymuir /cap/t-piece/or with the trach removed.

            The pacer allows me to use just a little bit of pressure support,6 or 8 while using the vent in cpap mode.Without the pacer, I would need 10 -12 psi. to match the volumes/comfort I have with the pacer.The vent does not give me breaths....I initiate my own breath.

            Also,my DPS settings have been increased since I last posted.So,now I can REALLY feel the pacer stimulating my diaphragm,which makes it easier to initiate/time my breath with the pacer.

            I should clarify that the left side of my diaphragm was working before getting the pacer.However, the right side was not.So,I had to ability to initate own my breath,but it was very weak.

            Now with the pacer the increase in strength is AMAZING!.I feel like superwomen....lolol.You can see my whole chest working now vs. just a little bit on the left side before getting the pacer.

            Anyways,at my next visit.I will increase my mA to 25 and increase the 'pulse frequecy to 20(i think that increases the duration of my breath).My breath rate is set at 12BPM,but I am not locked into that rate....i can take my own unstimulated breath as well.

            I hope I'm not confusing you.You have a better grasp of the "technical "stuff than I do.....the pacer has been fantastic for me and as i said before your words of encouragement/information were huge in directing me towards the pacer.................THANK YOU

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              That is FANTASTIC news Nancygail. (I'm a Lindagail by the way)
              I don't understand the technical aspect of any of this-only the things that my husband I have learned in the last 3 years.
              I'd love to meet trainman,Scaper and Bill in person.
              Last edited by LindaT; 1 Dec 2011, 11:09 PM.

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                LindaT, if you're in Iowa someday, let me know!

                I'm also glad to hear your progress Nancygail. I tried your method of leaving the trach out, but my assistant had trouble getting it back in after only six minutes! Glad it works for you at least.
                C2/3 quad since February 20, 1985.

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                  NancyGail, I'm not familiar with the difference between typical mechanical ventilation and CPAP -- but if you're happy with your situation, that's really all that matters!

                  And to any trach/vent user, if you ever come to Central Florida, we could potentially get together. Though free video calls via Skype are an excellent alternative.

                  Merry Christmas to ALL!

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

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

                  Comment


                    Bill did you use the pacemaker

                    My brother is scared to death and i really need to find someone who has expirenced the pacemaker can you help?

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                      I Have Met Bill Miller in Person : He's A Great Guy !

                      Originally posted by LindaT View Post
                      That is FANTASTIC news Nancygail. (I'm a Lindagail by the way)
                      I don't understand the technical aspect of any of this-only the things that my husband I have learned in the last 3 years.
                      I'd love to meet trainman,Scaper and Bill in person.
                      I have have met Bill Miller in person at one of the Bowling Alley's where he does his wheelchair bowling with his IKAN Bowling device that he co-invented. I watched him bowl and was very, very impressed. He bowls better then I do and I'm able to use my hands. Bill is a great guy. Very outgoing, caring and very friendly.

                      "HELLO BILL" !!
                      BOB S.
                      Spring Hill , Fla.

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                        Originally posted by 2bhayward View Post
                        My brother is scared to death and i really need to find someone who has expirenced the pacemaker can you help?
                        As this thread shows, their are a few of us that pace regularly. What are his concerns? Second, what's his injury level and how far is he post injury?
                        C2/3 quad since February 20, 1985.

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                          2bhayward,

                          Multiple people here can potentially offer helpful comments, including Trainman, who has used the DPS pretty regularly for over a year now. I attempted to have the DPS surgery, but my diaphragm would not fire, even when directly stimulated by the DPS when the surgeon was inside my body.

                          I had plenty of fear in the beginning, before I got used to my ventilators. Like Trainman asked above, we need to know more about your brother's situation before anyone can potentially offer helpful comments.

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

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

                          Comment


                            Originally posted by RAFS View Post
                            I have have met Bill Miller in person at one of the Bowling Alley's where he does his wheelchair bowling with his IKAN Bowling device that he co-invented. I watched him bowl and was very, very impressed. He bowls better then I do and I'm able to use my hands. Bill is a great guy. Very outgoing, caring and very friendly.

                            "HELLO BILL" !!
                            BOB S.
                            Spring Hill , Fla.
                            Howdy Bob, and thank you for the kind comments. You should come up again for Quad Squad Bowling sometime.

                            No worries!
                            Wheelchair users -- even high-level quads... WANNA BOWL?

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

                            Comment


                              Originally posted by BillMiller823 View Post
                              Howdy Bob, and thank you for the kind comments. You should come up again for Quad Squad Bowling sometime.

                              No worries!
                              Howdy Bill,
                              Thank you for for your nice reply. I will try soon to travel again up to Leesburg to watch you bowl. Your welcome for my kind words. It was my pleasure to do so for a nice guy like you.
                              Bob
                              now living in Spring Hill , Fl

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                                Hi all,

                                Been a while since I've been on, but so much has happened. Dad is talking wonderfully now and has his cuff down all day. We were off the vent (and even off the pacer!) for up to 16 hours at a time, unfortunately, there was a setback (had a cancer treatment but is doing fine) and we now are only doing a short time each day with the help of the pacer. We are only at half strength on the pacer so will try and increase that soon.

                                However, Dad really hates having his cuff up at night and even moreso having to take it down in the morning. He still has a fair amount of secretions which doesn't help. I put the cuff up as Dad starts to snore and then desats after he falls asleep. He is already on 1400cc (yes Dad is a giant) so I've no room to increase his lung volume...any thoughts or suggestions, experiences?

                                Thanks!

                                Tracey

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