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

  1. #191
    Quote 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.

  2. #192
    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.

  3. #193
    Quote 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.

  4. #194
    Senior Member
    Join Date
    Aug 2006
    Location
    Spring Hill , Florida
    Posts
    616

    Smile

    Quote 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

  5. #195
    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

  6. #196
    It's great to hear that your dad was off of breathing support, hopefully that will return soon. I don't have any suggestions for the current trouble, but somebody else may.
    C2/3 quad since February 20, 1985.

  7. #197
    Thanks Trainman! Good to hear from you...we will get back there, just will take time and dedication. He is so enjoying telling stories to the grandkids and nursing staff and it is great to hear his voice!

    Others with some cuff up at night or not experiences?

    Tracey

  8. #198
    Tracey, what is their rationale for the continued use of a cuffed trach at all?

  9. #199
    Hi Tracey, Glad you checked in. We take our loved ones voices for granted don't we?
    After weeks and weeks at a time without hearing it we learn to appreciate it.

  10. #200
    Quote Originally Posted by Scaper1 View Post
    Tracey, what is their rationale for the continued use of a cuffed trach at all?
    Tracey, I'm with Scaper here... why the cuff up at night? And, eventually, if 24/7 cuff down is possible, I'm a big proponent of the cuffless style trach. It made a significant, positive difference for me (for one, it reduced my quantity of secretions, a problem your Dad is having).

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

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

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