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

  1. #11
    Quote 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.

  2. #12
    Senior Member
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    Quote 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
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  3. #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.

  4. #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.

  5. #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.

  6. #16
    Quote Originally Posted by trainman View Post
    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.
    Yes, please keep us posted. I wish you both the best of luck.
    This respiratory stuff sucks.

  7. #17
    Senior Member
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    I'm also interested.I am able to go off the vent for 2-3 hrs.But i feel a DPS would let me extend that time.

    Do any of you know of a clinic /MD that performs the surgery in the portland oregon area?


    Thanks................Nancygail

  8. #18
    Quote Originally Posted by nancygail View Post
    I'm also interested.I am able to go off the vent for 2-3 hrs.But i feel a DPS would let me extend that time.

    Do any of you know of a clinic /MD that performs the surgery in the portland oregon area?


    Thanks................Nancygail
    Not exactly in the Portland area but on the West coast the surgery is offered at Vancouver General Hospital in British Columbia. Not sure though if this is restricted to Canadian citizens. Might be worth looking into if there isn't a place closer in the US to have the procedure done.

  9. #19
    Nancygail -- It looks like you're in luck!

    Is Portland close enough?

    Legacy Healthcare System, Portland, OR, 97210
    Vandy Sherbin, MD-Pulmonologist, 503-413-5702 vsherbin@lhs.org
    Dr. Swanstrom, General and Minimally Invasive Surgery Division, 503-281-0561, agill@orclinic.com

    Here are all the U.S. locations:

    http://www.synapsebiomedical.com/products/us_sci.shtml
    Wheelchair users -- even high-level quads... WANNA BOWL?

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

  10. #20
    Senior Member
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    WOW! THANK YOU!......Yep they are just around the corner

    Also, I want to thank you for your advice/help we got from you awhile back.Our ENT gave us a green light for changing my whole single wall trach (bivonna tts sz 8) everyday.We also use cough assist and the vest............Zero lung infections/clear xray for 3 years.

    Thanks Again Bill we'll keep you posted.....Nancygail

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