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

  1. #41
    Senior Member
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    Aug 2006
    Location
    Spring Hill , Florida
    Posts
    616

    Smile

    Quote Originally Posted by trainman View Post
    Congratulations Bill. I'm a little over two months after getting my DPS and it has been mainly a good experience.

    You and I were part of the research group on February 19, 2009. It's unfortunate it took so long with insurance and all the other red tape, but glad both of us made it. Have a good surgery, I'll look forward to the report and look for similarities.
    Hi trainman. Glad to read the good news. So are you off the ventilator now completely? If so that's great. Hope it has been worth it for you to go through the procedure. Was yours done outpatient also or did you have to stay over for awhile after the surgery to implant it in your body? Looks like you have lost a lot of weight. If so that's great.
    Belated Happy New Year to you.
    Take care!

  2. #42
    I can't say respiratory care is easier, but it's much better for self-image without tubes everywhere. As has been said, we all wish you well next week.
    C2/3 quad since February 20, 1985.

  3. #43
    I will be thinking of you Bill. Though my husband would not be a candidate I am very excited for the young people that are.
    It sure would simplify things. I know too well all of the equipment that has to be packed.
    He is fortunate be be able to breathe on his own most of the day only using the vent at night or during the day if needs a rest. The main advantage is having a large breath to inflate the lower lobes.
    We don't have a pulmonologist (our lack of SCI medical support is another story) but use the numbers advised by Craig Hospital.
    I have a question for you or any other trachea users about secretions.
    We have a cough assist we use in the morning and if we use later in day does notproduce much. Your info on your website very helpful Bill.
    But most days we suction often. Some days not so bad, but last night we had a marathon. Not thick and gunky, just clear-but lots of it.
    He takes allergy med, sudafed when needed and muconix as prescribed by Craig.
    Some days he can not tolerate the speaking valve.
    I'm not shy to suction in public, but it does limit our getting out when I have to pull the van over to do it. Then some days we only suction a few times.
    Any ideas or help??

  4. #44
    Hi Linda,

    Why is it that y'all only use the CoughAssist in the morning, and suction otherwise?

    I mean, do whatever works best for your husband, but we literally gave away my suction machine because we like the CoughAssist SO much better -- but part of our CoughAssist success is how exactly we use it. Linda, I think you've read how we use it, but if not, it's available here:

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

    Regarding secretion help, I take a homeopathic medicine called Phosphorus (30X strength) occasionally, but it's more for turning secretions white when they get a bit funky looking, and also if you have bleeding via your trach, Phosphorus can help. But I haven't noticed if Phosphorus helps to cut down on the volume of secretions produced (my volume is pretty consistent, and fairly high, so it's difficult to tell). I think I trace aspirate fairly often, but with the CoughAssist, the secretions produced don't stay in me long enough to become an infection (e.g. pneumonia or bronchitis, etc).

    Anyway, I buy Phosphorus (and other items) from here:

    http://www.vitacost.com/Hylands-Phosphorus

    But if you're going to buy from Vitacost, go through FatWallet.com and get 5.0% cash back (and/or other deals):

    http://www.fatwallet.com/coupons-cash-back/Vitacost/
    Wheelchair users -- even high-level quads... WANNA BOWL?

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

  5. #45
    Quote Originally Posted by RAFS View Post
    Good Luck Bill! Hope all goes well for you during the surgery. I know of a Veteran who had his done at Lakeland Regional Medical Center. He was an inpatient for a long time in the Ventilator unit at the VA. Last I saw him he was still on the vent but only for pressure support. He was also on the breathing pacemaker as well.
    Don't know what brand he was given. He was shot in the neck over in Iraq. He was a Warrant Officer he was leading his troops in battle when he was injured. He's living in his own home in Tampa not to far from the VA as far as I know.
    Again Bill I wish you the best of luck with your procedures.
    Thanks Bob. I'm going to send you a quick email about the issue you were trying to resolve (so we keep this thread mostly about DPS / vent / trach issues).
    Wheelchair users -- even high-level quads... WANNA BOWL?

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

  6. #46
    Quote Originally Posted by trainman View Post
    I can't say respiratory care is easier, but it's much better for self-image without tubes everywhere. As has been said, we all wish you well next week.
    Roger that Joel. I've wondered how we'll do things differently with the DPS, but I don't want to put the cart before the horse (i.e. I'll wait to get it and see if I can learn to breathe with the DPS before becoming too concerned with related issues). Thanks.
    Wheelchair users -- even high-level quads... WANNA BOWL?

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

  7. #47
    Quote Originally Posted by BillMiller823 View Post
    Hi Linda,

    Why is it that y'all only use the CoughAssist in the morning, and suction otherwise?

    I mean, do whatever works best for your husband, but we literally gave away my suction machine because we like the CoughAssist SO much better -- but part of our CoughAssist success is how exactly we use it. Linda, I think you've read how we use it, but if not, it's available here:

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

    Regarding secretion help, I take a homeopathic medicine called Phosphorus (30X strength) occasionally, but it's more for turning secretions white when they get a bit funky looking, and also if you have bleeding via your trach, Phosphorus can help. But I haven't noticed if Phosphorus helps to cut down on the volume of secretions produced (my volume is pretty consistent, and fairly high, so it's difficult to tell). I think I trace aspirate fairly often, but with the CoughAssist, the secretions produced don't stay in me long enough to become an infection (e.g. pneumonia or bronchitis, etc).

    Anyway, I buy Phosphorus (and other items) from here:

    http://www.vitacost.com/Hylands-Phosphorus

    But if you're going to buy from Vitacost, go through FatWallet.com and get 5.0% cash back (and/or other deals):

    http://www.fatwallet.com/coupons-cash-back/Vitacost/
    Hey Bill, Thanks for replying. When we use to cough assist in the morning we get a good amount of the "overnight" gunk out. Since we got the cough assist several months ago it has been a huge help in that way.

    But during the day it does not produce much if any, but the suctioning does. It is often like thin saliva, sometimes thicker.
    I remember you saying you got rid of your suctioning and wondered how or if you just did not have as much secretions.
    Yes, I've read your info on the cough assist which has been a HUGE help.
    The DME dropped this thing off with minimal advice on how to actually use it.
    What do you do when you are out? We have to suction in the van before we go somewhere because even the bouncing seem to bring stuff up. I can't imagine hauling the CA around.
    Thanks for the links!

  8. #48
    Senior Member
    Join Date
    May 2009
    Location
    portland oregon
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    128
    LINDAT...how much mucinex are you using?I find if I use more than 1 dose that I also have lots of clear secretions.So, generaly I only use it if I feel like my lungs are getting dry.

    Also,in addition to using coughassist 3-4 times a day.I also use "the vest" which helps to loosen up any secretions. I also find that laying flat on my side helps to drain my lungs.

    Keep us posted...we'll get this figured out.

  9. #49
    Quote Originally Posted by LindaT View Post
    Hey Bill, Thanks for replying. When we use to cough assist in the morning we get a good amount of the "overnight" gunk out. Since we got the cough assist several months ago it has been a huge help in that way.

    But during the day it does not produce much if any, but the suctioning does. It is often like thin saliva, sometimes thicker.
    I remember you saying you got rid of your suctioning and wondered how or if you just did not have as much secretions.
    Yes, I've read your info on the cough assist which has been a HUGE help.
    The DME dropped this thing off with minimal advice on how to actually use it.
    What do you do when you are out? We have to suction in the van before we go somewhere because even the bouncing seem to bring stuff up. I can't imagine hauling the CA around.
    Thanks for the links!
    Hi Linda,

    Do you have the manual model CoughAssist or automatic model?

    The manual model is a little smaller and lighter, thus easier to take in our van (or elsewhere as needed). Insurance bought an automatic model CoughAssist (actually, the in-exsufflator, it's predecessor) but suctioning wasn't all that effective for me, so we realized we needed a second CoughAssist (in-exsufflator) and bought the manual model, since even with the automatic model, we only operated it in the manual fashion (the manual model also costs less).

    But... to make carrying supplies easier, I bought a good cart (with swivel wheels) for my van. Specifically, I bought a blue one of these from this eBay seller:

    http://cgi.ebay.com/ws/eBayISAPI.dll...m=370476728614

    We bought a large Rubbermaid container for supplies and it sits in the bottom of the cart, and the CoughAssist sits on the Rubbermaid container (with some blankets) when we go somewhere. Though we usually leave the cart and CoughAssist in my van, depending on where we are and what we're doing.

    Incidentally, if you are going to buy something on eBay, you can get 36% of the seller fee that eBay would receive if you go through BigCrumbs.com. It's basically a marketing fee for eBay (you aren't costing the seller anything) and through BigCrumbs, people who tell others about BigCrumbs, there's a tiny referral percentage distributed to the referral people. It's similar to multi-level marketing, but legit, because this is purely on sales at vendor websites, and the vendors merely pay a small percentage or pre-determined amount on the sale they received. Here's my referral link for anyone interested:

    http://home.bigcrumbs.com/Bill823

    I mentioned FatWallet.com above, and I use both it and BigCrumbs.com, whichever gives the better deal from the vendor I want to buy from. I think BigCrumbs has a better deal for eBay purchases.

    No worries!
    Last edited by BillMiller823; 02-01-2011 at 02:11 AM.
    Wheelchair users -- even high-level quads... WANNA BOWL?

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

  10. #50
    I'm home from my surgery -- here's the email I sent to my master list (to which I will add practically anyone who asks):

    Hello Everyone,

    Ultimately our trip for my surgeries was successful, though not as successful as hoped.

    The primary successes (notable thus far) were replacing my cardiac pacemaker, getting x-rays of my chest and neck (that I was given to view on CD) and having actual outpatient surgery for my procedures (no overnight stay required, which limits my chances for infection).

    Missing from that success list is implementation of the Diaphragm Pacing System (DPS). Even when inside my chest, with the electrodes placed on my diaphragm, my diaphragm wouldn't fire when stimulated by the DPS. My surgeon, Dr. Michael Cheatham, tried everything -- even calling DPS inventor Dr. Raymond Onders (who trained Dr. Cheatham to do the DPS) for additional suggestions. It wasn't meant to be.

    No worries.

    Though I could have received several benefits from the DPS, I stand by my statement that I already have a high quality of life and I'm not limited by the vent in the most important ways: speech quality and infections.

    For a quadriplegic like me, my ability to talk well is of extreme importance. And if you've heard me talk in person or via phone, I think you'll agree that I speak well and typically clearly, at an appropriate volume (when well hydrated) and with little pause between breaths (due to the ability to initiate another breath sooner than programmed and also receiving fairly large breaths). With the DPS, I was concerned about matching that quality because breaths cannot be initiated with the DPS and the size of breath is smaller than what I receive via vent (quite possibly 30% smaller for me). That could have been mitigated by increasing my breath rate on the DPS, but only doing it could answer that question.

    Also, my lack of significant respiratory infections for a vent user is fairly uncommon, and is represented by zero respiratory-related hospitalizations in the 13.5 years since I was discharged from my initial hospitalizations and rehab (knock on wood and thank you God). I'm certainly not saying that my number of infections would have increased on the DPS (it could have, because I'm breathing through 3 filters on the vent, and would have one filter at most on the DPS) but it's hard to beat zero in 13.5 years.

    I'm not trying to disparage the DPS; I have two friends in particular who are benefiting significantly from the DPS, and I wanted to try it and potentially benefit from it. But I don't want anyone reading this to think that life with a ventilator is a necessarily bad.

    If my diaphragm would have fired when stimulated by the DPS, I would've continued to embrace the challenge of becoming a successful DPS user. But that is/was a very significant challenge (especially when considering everything altogether) that included learning and teaching my caregivers different ways of providing for my needs (for example, it would've placed a port on my stomach where the DPS connected that would've required care, and careful bathing around, etc). Point being, I think that we (as a team) are already good at life with a ventilator, and largely see it as not that big of a deal.

    If interested, I could expand on a lot of these points and others.

    No worries and God bless!

    Bill Miller :-)
    C1-2 Quadriplegic with a 221 High Bowling Game
    Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT
    My blog: http://powerwheelchairusers.blogspot.com
    Business website: http://www.ikanbowler.com
    Personal website: http://www.lookmomnohands.net
    Last edited by BillMiller823; 02-03-2011 at 06:28 AM. Reason: More accurate tone conveyance
    Wheelchair users -- even high-level quads... WANNA BOWL?

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

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