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

    I was asked to chronicle my efforts to hopefully go from fulltime ventilator user to successful DPS user (success can be defined multiple ways) for the International Ventilator User's Network (IVUN) in a series of articles / blog entries.

    My first blog entry regarding why I'm seeking the DPS is here:

    http://powerwheelchairusers.blogspot...gic-seeks.html

    That's the full version above. A nicely edited version is in IVUN's April newsletter, which I'm hosting a PDF version of that you can download from my website here:

    http://www.lookmomnohands.net/object...0-24-2Nsec.pdf

    If you want even more info regarding the DPS, especially why I wasn't initially interested in it, and how I became interested, here's an older CareCure thread (I'm starting this new thread because the older thread has an outdated title, and my blog entry has kind of a condensed summary of the older thread's key points):

    https://www.carecure.net/forum/showthread.php?t=114614

    - Bill :-)
    Last edited by rdf; 27 Sep 2011, 4:04 PM.
    Wheelchair users -- even high-level quads... WANNA BOWL?

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

    #2
    I'm a pretty functional c 3/4 incomplete but recently found out that my left diaphram is paralyzed so I don't get enough O2 when I am sleeping. I still have to go thru more testing but I seem destined to have be be hooked up to some kind of simple machine at night. My doctor threw out the possibility of the diaphram pacemaker as an alternative if the machine bothers me, so I will be interested in following this and seeing how use of the pacemaker progresses. Thanks for your posts because I have learned a lot about it already from you.
    2012 SCINetUSA Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

    Comment


      #3
      Hi swh2007,

      If none of the non-surgical, non-invasive options work for you, then the DPS might be a good solution. I see you're from Florida, and several places in Florida do the DPS surgery.

      On a side note, one of my nurses has asthma & sleep apnea, and has learned to sleep with a face mask hooked up to a CPAP machine (I think it's a CPAP, though I'm not exactly sure what that is). The key, according to her, was getting a comfortable mask. I think there are sales reps that custom fit masks to ensure comfort, but I could be wrong about that. I'll ask her if you want me to.

      Best of luck and God bless!
      Wheelchair users -- even high-level quads... WANNA BOWL?

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

      Comment


        #4
        Originally posted by BillMiller823 View Post
        Hi swh2007,

        If none of the non-surgical, non-invasive options work for you, then the DPS might be a good solution. I see you're from Florida, and several places in Florida do the DPS surgery.

        On a side note, one of my nurses has asthma & sleep apnea, and has learned to sleep with a face mask hooked up to a CPAP machine (I think it's a CPAP, though I'm not exactly sure what that is). The key, according to her, was getting a comfortable mask. I think there are sales reps that custom fit masks to ensure comfort, but I could be wrong about that. I'll ask her if you want me to.

        Best of luck and God bless!
        Yes.they are talking about hooking me up to a similiar device called a BiPAP maachine or something like that. Apparently it is somewhat more difficult to get used to than the machine you are talking about because in addition to what the CPAP or whatever does (force O2 in) it pulls Carbon dioxide out. I will probably do fine on it--just another little annoyance. But at least now I know a little more about the Pacemaker my doctor was talking about. Take care, Steve
        2012 SCINetUSA Clinical Trial Support Squad Member
        Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

        Comment


          #5
          Originally posted by swh2007 View Post
          Yes.they are talking about hooking me up to a similiar device called a BiPAP maachine or something like that. Apparently it is somewhat more difficult to get used to than the machine you are talking about because in addition to what the CPAP or whatever does (force O2 in) it pulls Carbon dioxide out. I will probably do fine on it--just another little annoyance. But at least now I know a little more about the Pacemaker my doctor was talking about. Take care, Steve
          The BIPAP machine is no more difficult to get used to than the CPAP, My wife now uses BIPAP. It does keep airway open for both inhaling and exhaling. Some BIPAPs also have backup full support vent mode in case you stop breathing during the night. The main difficulty is getting used to the face mask. There are full face masks, masks which just cover the nose and nasal pillows which fit just the nostrils. The key is getting used to one of these. Once you do, the BIPAP will keep you properly oxygenated and you should wake up refreshed. Some people use these for midday naps as well as a way to get refreshed in the middle of the day. If you are having oxygenation problems or suspect you are you may want to purchase a cheap pulse oximeter which you can get on Amazon for 65.00 or thereabouts. With the pulse oximeter you can quickly check your pulse and oxygenation level throughout the day, a friernd can check you during sleep situations. Your oxygenation level should be 90% or above. I have checked my cheap pulse oximeter against the doctor's more sophisticated one and there is no difference.

          Comment


            #6
            Dave started out with a biPap and hated it. We tried different masks. The worst was that he could not reach up and adjust it if he was not in place.
            After a bout of pneumonia last June (and nearly 2 mo stay) it was decided he should keep the trachea that was put in shortly after he was admitted. Now he uses a vent at night.
            Keep us posted on how you are progressing with this Bill.

            Comment


              #7
              Steve, I keep forgetting to ask my nurse about where / how she got her mask.

              I like AncientGimp's suggestion of getting a cheap pulse oximeter, but I never thought of checking Amazon.com. That said, my respiratory therapist gave me these links:

              http://www.devonsuperstore.com/Pulse-Oximeters-C7.aspx

              http://www.semedicalsupply.com/pulse_oximeters.htm

              Linda, I will, no worries.
              Wheelchair users -- even high-level quads... WANNA BOWL?

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

              Comment


                #8
                Tahnks for the above suggestions and comments. My level apparently is 87. I'm guessing I am going to have to get used to the BIPAP. At least now I know the name of the machine. As I said, just another inconvenience but nothing major....
                2012 SCINetUSA Clinical Trial Support Squad Member
                Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

                Comment


                  #9
                  Steve, I finally remembered to ask my nurse about her mask. I was wrong about it being custom. Apparently there are many different shapes & sizes, and she just kept trying them until she found one that was reasonably comfortable. But that doesn't mean custom masks don't exist and aren't an option, if someone can't find a reasonably comfortable mask.

                  Regarding your 87/100 oxygen saturation level, I remember my doctors telling me anything in the 90s is acceptable, but the higher the better. So, I hope you get something helping you ASAP. You'll probably notice a difference in your overall comfort level, once you're back above 90. If so, the increased overall comfort might balance out the annoyance of having to use the mask & BIPAP.

                  Then again, if you're 87 during the day, and BIPAP is for sleep time, then you might need to pursue the DPS fairly quickly, and maybe use some oxygen during the day until then.

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

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

                  Comment


                    #10
                    Hey thanks. The 87 is only during REM sleep. Apparently at other times my other muscles are able to make up for the paralyzed diaphragm (sp) and keep it in the 90s. I never could spell that word. I have to schedule the final tests next week. I'll let you know how things work out. I'll try to get used to the machine.
                    2012 SCINetUSA Clinical Trial Support Squad Member
                    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

                    Comment


                      #11
                      Originally posted by swh2007 View Post
                      Hey thanks. The 87 is only during REM sleep. Apparently at other times my other muscles are able to make up for the paralyzed diaphragm (sp) and keep it in the 90s. I never could spell that word. I have to schedule the final tests next week. I'll let you know how things work out. I'll try to get used to the machine.
                      It sounds like it is critical for you to get and use a BIPAP for sleep. You may be doing damage to yourself with these low oxygenation levels during sleep. My wife uses the BIPAP with full support backup for sleep. We have ordered a pillow made for BIPAP/CPAP users so that she can move her head more freely during sleep without displacing the mask.

                      Sorry to distract from the thread but am concerned about these oxygen levels.

                      Comment


                        #12
                        Originally posted by ancientgimp View Post
                        It sounds like it is critical for you to get and use a BIPAP for sleep. You may be doing damage to yourself with these low oxygenation levels during sleep. My wife uses the BIPAP with full support backup for sleep. We have ordered a pillow made for BIPAP/CPAP users so that she can move her head more freely during sleep without displacing the mask.

                        Sorry to distract from the thread but am concerned about these oxygen levels.
                        Thank you for your concern and comments. I am going to take care of this next week. I have been procrastinating because the doctor wants me to stop taking sleeping pills, which most likely lead to no REM sleep at all and probably to more annoying CC posts by swh2007 in the middle of the night. Thanks again, Steve
                        2012 SCINetUSA Clinical Trial Support Squad Member
                        Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

                        Comment


                          #13
                          My 2nd blog entry (and IVUN submission) on my pursuit of the DPS is here:

                          From Vent to Diaphragmatic Pacing System -- Part II

                          For additional details, see post #1 of this thread.

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

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

                          Comment


                            #14
                            My 3rd blog entry (and IVUN submission) on my pursuit of the DPS is here:

                            From Vent to Diaphragmatic Pacing System -- Part III

                            The above (Part III) basically explains why I don't have a surgery date yet -- but another CareCure member does, and I'll ask him if he wants to share it here (I'm excited for him!).
                            Wheelchair users -- even high-level quads... WANNA BOWL?

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

                            Comment


                              #15
                              Correct Bill, I'm scheduled for surgery on November 15 to get the DPS. That is assuming testing on the 12th goes well and this summer's unexpected surgery doesn't interfere with anything.

                              I will post after November's progress to keep everyone in the loop. After using a vent for 25 years, breathing through my nose will be a big change.
                              C2/3 quad since February 20, 1985.

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