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

  1. #51
    Sorry to hear Bill, but we knew it was a possibility going in to surgery. As you said, I'm not greatly satisfied with speech quality, I sound like a vent user, pausing while talking.

    Thankfully the other part of the procedure worked, hearts are a good thing to keep beating.
    C2/3 quad since February 20, 1985.

  2. #52
    Hi Bill, Sorry things did not work out as hoped, but you have a good way of looking at it and weighing the pros and cons.
    As we know too well, no two SCI are the same.
    I had not seen a smaller cough assist like that.
    Nancygail, I'm sorry I did not see your post til now. Dave uses a Vest treatment too. He usually uses the muconex 3 times a day or gets very congested.
    It is so darn hard to keep a perfect balance with the meds. He has allergies on top of it in the fall and spring.

  3. #53
    Senior Member
    Join Date
    May 2009
    portland oregon
    Bill I can't tell you how much I admire your courage.I was not put on a ventilator until 2007(secondary to complications fronm's a long storyThat first year on a vent was not fun.However,when I first read posts it gave me new life and hope.

    I've been able to adjust to the vent.No infections/able to talk/breath on my own.I want you to know that you've been "HUGE" in helping me adjust.....Thank You

    I know you'll be good.

  4. #54
    Thank you all for your comments.

    I was looking forward to the challenges (and potential benefits) of becoming a successful DPS user, but this "simplifies" things back to what we (my caregivers and I) have a track record for doing well.

    Also, I stay pretty busy (my to-do list is pretty long) and I would've had to "make time" to use the DPS, so maybe instead I can focus on other improvements I need to make (most notably the switch to Dragon NaturallySpeaking, which I've been fighting for years).

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

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

  5. #55
    Quote Originally Posted by trainman View Post
    Sorry to hear Bill, but we knew it was a possibility going in to surgery. As you said, I'm not greatly satisfied with speech quality, I sound like a vent user, pausing while talking.
    Hey Joel,

    I know you know this, but to possibly help educate anyone else who might read this thread, I want to discuss how users can attempt to minimize the pause both when using a vent and when using the DPS.

    On the vent, there are several ways to minimize that pause. The number one thing to do is use a speaking valve (I'm largely aware of only Passy-Muir Speaking Valves, or PMVs). The cool thing about the DPS is you can use a PMV with it, similar to the vent, or plug the trach and breathe through one's mouth and/or nose. But the result is the same: you get to use the full breath for speaking, i.e. there isn't any exhale that goes back out the vent circuit. The PMV seals the exhale direction off, so all exhale must go out the user's mouth and/or nose.

    Beyond using a speaking valve (on the vent) the options for reducing the speech pause are to get bigger or more frequent breaths, either of which result in more air for speaking. To contrast the DPS with the vent, on the DPS, users can adjust the breath rate -- and you told me you like 14 BPM, correct?

    But aside from having Synapse Biomedical trade out your DPS stimulator (I don't know if that's the proper name) and increasing the amount of shock given to your diaphragm, there is no way to increase the volume of breath, right? So if the most your body is capable of is, say, 700 cc, even with 14 BPM, you can still have a noticeable pause, correct?

    I don't know how much they can increase a DPS user's volume by increasing the strength of stimulus given, but I know you are interested in increasing yours soon, so I'm interested in the difference in you.

    The DPS and vent can both be easily set for a desired breath rate -- though I advocate doing so with the approval of one's doctor. But where the vent has the advantage over the DPS -- speech wise -- is with the ability to also change the volume, and with the settings that allow users to initiate breaths (such as SIMV or Assist Control) so the user can get another breath sooner than the programmed time (and thus shorten the pause in speech).

    Most vent users should be able to access their neck muscles (I'm a C1-2 and I can) so I think most should be able to develop their neck muscles enough to slightly pull their chin down / chest up, which is all it takes to initiate a breath (in my experience -- though it took me about a year post-injury before I could do it well -- and it took a whole lot of trying, since initially I couldn't hardly move my head at all).

    Anyway, whether on the DPS or a ventilator, I think most users can find comfortable settings, but need to have their doctor ensure the settings are also safe.

    Two ways users and their caregivers can try to determine if their breathing method is working well is by the color of the person's face and with an inexpensive oxygen saturation monitor.

    Facially, if someone isn't breathing well, a lack of oxygen can be seen in bluish colored lips, etc. Also, another potential danger is how well the person is getting rid of their carbon dioxide when they exhale. And, someone please correct me if I'm wrong, but I think too much CO2 staying in one's body will result in a reddish face, correct?

    That said, a red or splotchy face (in quadriplegics, I'm not sure about others) typically indicates autonomic dysreflexia (which is a rise in blood pressure due to a pain in the body somewhere) and usually means one's bladder needs relief.

    Lastly, I mentioned an inexpensive oxygen saturation monitor above, which can check the O2 saturation level in one's blood and as long it's in the 90+% range, most people should be fine (though high 90s is better than low 90s). I purchased a finger O2 sat monitor new on eBay (from China) delivered for about $30, and we compared my O2 sats and pulse to the vitals given by the fancy equipment at the hospital, and the $30 machine was pretty close. So it can at least help diagnose or give peace of mind for users outside the hospital.

    The finger O2 sat monitor I bought was this:

    For cash back on eBay purchases, see the 49th post on this thread above or access it directly HERE.

    God bless all.

    Bill Miller
    Last edited by BillMiller823; 02-08-2011 at 02:26 AM. Reason: dysreflexia clarification
    Wheelchair users -- even high-level quads... WANNA BOWL?

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

  6. #56
    Yes, using a speaking valve while on a vent is the best way, in my opinion, to speak clearly. At my rate of 15 breaths per minute, I never had trouble carrying on a non-stop conversation, much to the dismay of those around me.

    When using a vent without the valve, as Christopher Reeve did, one must pause while talking as speech is only possible when getting a breath. With the diaphragm pacing system I now use, I can speak between breaths when my trach is plugged. However, while breathing in, I either can't or haven't learned how to speak. I have asked "normal" breathing people about this, but they haven't given enough attention to know.

    As I write this at 9:08am, it is still -4 outside my house, and the cold is predicted to stay around. When it warms up enough to get out, I plan to send a box in for an increase in the jolt given. I'm going around 12 hours a day without the vent now with few problems, but a larger breath will be nice.
    C2/3 quad since February 20, 1985.

  7. #57
    12 hours! That is wonderful!

  8. #58
    Quote Originally Posted by trainman View Post
    I'm going around 12 hours a day without the vent now with few problems, but a larger breath will be nice.
    I struggled a lot when I first got the pacer and it was probably 8 months before I could go for 12 hours comfortably, with a number of frustrating physical and emotional setbacks in the time leading up to that. So you are far, far ahead where I was at the same point in time, which is great. I am very happy this has worked out for you I can now go for up 18 hours at a time, probably longer if I really had to, although I find that my comfort zone is more in the 10-12 hour range. I admit that I was hoping I would be able to go totally vent free. That didn't happen but I am okay with that now, although initially that was pretty devastating given my own expectations--which admittedly where higher than my doctors' expectations. My quality of life has vastly improved and I am glad I went ahead with it. Good luck with continued success for you trainman.

  9. #59
    Would really like to know more about the challenges and experiences of weaning to a diaphragm pacemaker. Dad is quadriplegic and on a vent as of Jan 2010 due to a rare cervicomedullary junction stroke. Unfortunately (long story) his cuff is still inflated and he can't speak only mouth words so communication is problematic.

    Any help would be greatly appreciated!


  10. #60
    Hi Tracey. Sorry about your dad. To use a pacer he'd need to be tested to see if his phrenic nerve responds to stimulation. The good news is that since his paralysis is relatively new, muscle atrophy of the diaphragm won't as problematic as it may be later. Whereabouts is your dad now?

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