Page 5 of 18 FirstFirst ... 3456715 ... LastLast
Results 41 to 50 of 174

Thread: Ventilation

  1. #41
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Location
    Greater Manchester
    Posts
    537
    Quote Originally Posted by Terry View Post
    Hi Dina;

    Sorry about getting your name wrong. LOL.

    Love Terry
    That's OK, Terry. I apologise as I had no idea you had dyslexia.

    As for daytime use of NIV, it was simply part of the discussion about use of NIV. Some medics seem to think that once patients start using it they will continue to the bitter end, ramping up to daytime use as and when the breathing deteriorates to the point where it is needed. I have said that, at the moment, I don't see daytime use as an option suitable for you. Obviously, it's possible I will change my mind at the time.
    Last edited by Gillette; 1st August 2019 at 19:25.
    Dina


    Trying to keep positive, but not always managing.

  2. #42
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Location
    Greater Manchester
    Posts
    537
    I had a useful session with the specialist nurse today about the NIV.

    I managed to use it for 4 hours last night, which I thought was pretty good, especially considering how things had been in the evening. This afternoon I had a practice with the IPAP at 10, up from 8 last night. We have organised what the settings will be tonight. The IPAP will start at 8 and be increased to 10 a little while later.

    This morning my CO2 level was 6.5 and O2 was 10.6.
    Dina


    Trying to keep positive, but not always managing.

  3. #43
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,325
    That's great news Dina, congrats on doing 4hrs.

    What type of mask did you use? It must have been pretty comfortable - no leaks or skin marks?

    I'm sure it was explained to you that your CO2 is a tad high, so hopefully with the IPAT at 10 and if you manage a few more hours on NIV tonight, that will come down.

    Did you feel the machine worked in sync with your breathing and nothing felt forced ​once you relaxed into it?

    I hope the rest of your admission goes as well.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #44
    Hello Dina.
    Hubby has been on ventilation for over a year now. We do put on dressings on his nose and gel strips on his neck. All to stop the straps digging in.
    During the day he has an identical machine on different settings. He uses this with a mouth piece, a bit like sucking on a pipe. It's quite unobtrusive and the machine hangs on the back of his electric wheelchair. He just uses it now and then when he's headachy or tired. All to get rid of the Co2.
    Better than sitting with a mask on during the day.
    Anyhow hope all goes well.

  5. #45
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Location
    Greater Manchester
    Posts
    537
    Quote Originally Posted by Ellie View Post
    That's great news Dina, congrats on doing 4hrs.

    What type of mask did you use? It must have been pretty comfortable - no leaks or skin marks?

    I'm sure it was explained to you that your CO2 is a tad high, so hopefully with the IPAT at 10 and if you manage a few more hours on NIV tonight, that will come down.

    Did you feel the machine worked in sync with your breathing and nothing felt forced ​once you relaxed into it?

    I hope the rest of your admission goes as well.

    Love Ellie.
    Thanks, Ellie. I was pretty pleased that I had managed 4 hours. Mind you, I had asked them to wake me to put the mask on and when it was done I fell back to sleep immediately. Consequently, I wasn't aware of it at all! The mask is called a full-face mask and covers the mouth and nose. I tried the nose-only mask but didn't like it much. However, I have asked to have more practice with it in readiness for my PEG insertion.

    The specialist nurse explained what all the readings are and explained about the consequences of the CO2 being above 6.
    Dina


    Trying to keep positive, but not always managing.

  6. #46
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,829
    Hi Dina,

    Well done and it's nice if you don't have to use it much during the day time as communication is not so easy. I have not let dislextica stop me from doing things but it is hard. I used to spell the same word three different ways in two sentences. I use a talking machine and that doesn't have any spell check, it does try to say some strange things.

    I have not heard or seen the mouth piece that looks like a pipe, maybe you could post a picture of it.

    Hope you are comfortable.

    Love Terry

  7. #47
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Location
    Greater Manchester
    Posts
    537
    Quote Originally Posted by Terry View Post
    Hi Dina,

    I have not heard or seen the mouth piece that looks like a pipe, maybe you could post a picture of

    Love Terry
    I think it was Music Man's Wife who mentioned a pipe, Terry.
    Dina


    Trying to keep positive, but not always managing.

  8. #48
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,829
    Thanks Dina;

    I should have put her name on that bit.

    How are you coping in there?

    Our road is closed for a couple of weeks down in the village, so I can go along it safely in my wheelchair later maybe. The village is about a mile away.

    Love Terry

  9. #49
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Location
    Greater Manchester
    Posts
    537
    Hi all,

    I managed about 7 hours last night and my CO2 level was down to 5.5 - brilliant, or what?!?

    This afternoon, the specialist nurse is due to train my partner and a friend how to put on and remove the mask. Apparently there is something else they need to do before I can be discharged home but It should be early next week.
    Dina


    Trying to keep positive, but not always managing.

  10. #50
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Location
    Newark on Trent
    Posts
    2,297
    Hi Dina,

    That’s great news that you can tolerate the mask overnight and a significant improvement in your CO2 levels. Although as yet I have no serious breathing issues, my neurologist at Sheffield is always promoting how effective the system is in terms of quality and extension to life.

    I hope you are back home soon and able to resume normality.

    Barry x
    Iím going to do this even if it kills me!

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •