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Unassisted breathing

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  • Unassisted breathing

    This is primarily for SCI nurse and Dr. Young, but anyone who has information is appreciated.

    I'm a C2/3 quad 22 years post injury and have always used a vent. I was never encouraged to greatly work on my ability to self breathe for more than transfers and emergencies, so I didn't much. However, a few years ago I wanted to do more.

    I started breathing with just my passey-muir (sp?), speaking valve as I call it, and was able to breathe through it and my nose. It allowed me to talk unlike bare trach as I had become used to and I could go much longer. Later I also started breathing with a decanulazation (sp?) valve that completely blocked the trach and required total breathing by nose. Finally, about two months ago, I started completely removing the trach and breathing through my nose and stoma.

    With the valve, I've gone for four hours, two hours with the trach blocked, and about six minutes without the trach, so far. The primary reason I quit is because I get bored, I don't have enough strength to do anything other than breathe, basically.

    Has anyone heard of how long someone has gone without a vent that supposedly needs it? My O2 sats stay around 97-99 when I'm breathing, same as on the vent, and I don't use oxygen. I love the feel and quietness of being off the vent, and have yet to enjoy anything more than the time I have the trach out. I would like to increase my time without it, but am unsure of how long would be safe.

    What are the best ways to increase my strength and stamina while off the vent? I don't expect to be able to totally go without the vent 24/7, but a regular part of the day would be great. I currently go with the trach blocked a minimum of 30 minutes a week and try to go without the trach once a week as well.

    I have strong lungs, I've only had pneumonia three times in my life and have never used O2 for more than a few hours twice in my life. However, the last few months have seen an increase in sinus infections, a first, which I'm afraid may be due to the increase in having the trach out even with using sterile technique.

    I am aware of implants for the diaphragm that can replace the external vent, but I prefer to decrease devices as much as possible, not just replace. I would also be concerned about damage for when the solution to SCI is finally found.

    Thanks for any advice.
    C2/3 quad since February 20, 1985.

  • #2
    I have no advice to give Trainman - but you have my support!!!! I'm not knowledgeable when it comes to these things - but it seems like that's a long time to breathe on your own and you can only get stronger with practice I assume??

    Keep up the good work! (You'll be french kissing in no time - lol).
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12


    • #3
      You have done great so far!! The best way to increase time is to do frequent short periods off the vent, then to gradually increase the length of time you are off for each period. Can you do your practice for 30 minutes 4X daily to start? Do it while watching TV or reading, or something else that will keep your mind occupied and not let you get bored. Once you can do this, increase to 45 minutes 4X daily, and gradually increase the time by 10-15 minute increments as you get stronger (every 5 days for example).

      You can also try using a Pflex for for part of the day to increase your diaphragm strength.

      Some people at your level are able to be off the vent full time during the day, but still use it at night. This allows you to rest at night and makes it so you don't have to be so vigilant at night about keeping breathing.

      It would be good to work with your pulmonary doctor on this and set up a plan. I assume they know you are working on this already? Discuss with him/her adding theophyline to your meds if you are not on it already, as there is some evidence that this can help with this process. 4-AP may also be worth considering.

      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


      • #4

        I barked at you in another thread a while ago about smoking. For that, I apologize. I never put myself in your shoes. Things must be tuff. I understand a litttle better of some of the things you must go through.

        I wish you the best of luck.

        Keep keepin on


        • #5

          Yes, my pulmonalogist and ENT are aware of my efforts and are happy about it. I had to get an order to start breathing sans trach. What is theophyline and what does it do? I primarily breathe by pulling air through my nose with neck and shoulders.

          Thanks for the advice, now I just need to find time to breathe, literally.
          C2/3 quad since February 20, 1985.


          • #6
            I didn't see this thread until now. This is really great. I am very happy for you. Keep me posted on how it goes.


            • #7
              I´ll move this to Care for more feedback.
              "So I have stayed as I am, without regret, seperated from the normal human condition." Guy Sajer


              • #8
                Good for you Tman. This shows even when the body is injured, ones spirit can stil prevail.


                • #9
                  Thanks, I love the feeling of being able to get off the vent if at least a short time.
                  C2/3 quad since February 20, 1985.