Muscular Dystrophy News Forums Forums Tips, Tricks, and Advice Updating Respiratory Equipment

  • Updating Respiratory Equipment

    Posted by Deb Robins on March 21, 2022 at 9:01 am

    Thankfully more of us, patients and caregivers are living longer with quality,  and witnessed equipment change and become better, safer, and more efficient.  This is certainly true of vans, wheelchairs, and ventilators too – for instance, BiPaps now come with internal batteries for blackouts. Years ago we had to have UPS devices, cables to check were plugged-in to external backup batteries, generators ready, not to mention foolproof ways to call out for help if you can’t breathe at all on your back when there is a power outage.  I’ve shared many safety precautions following tragic accidents and also made infographics, which I can certainly share again.

    But do we consider upgrading our secretion clearance strategies and equipment? I read often in FB groups and other forums about the optimal use of the cough assist, the need to have one at all; or concerns about discomfort, fatigue arise. I remember playing a part in introducing the old clinical Emerson cough assist with dials to my state and country over 2 decades ago – how we won over the therapists and fundraised to seed them into their clinics to build experience and confidence, and later for use in homes. Then came the digital versions, which are easier to use, and even more effective with a longer circuit if needed. Today our disability welfare scheme approves applications for respiratory equipment, so all we need to do is plan ahead.

    A couple of years ago after a hybrid IPV/cough assist was approved for sale in my country, we bought the combination machine outright after an infrequent chest infection was hanging on to my son – and that means additional courses of antibiotics, fatiguing cycles of harsh suctioning cycles and anxiety about the strain on organs like the heart. IPV has been in use in some places for decades but wasn’t designed for homecare.

    Of course, a regular cough assist is a life-saver yesterday, today AND tomorrow. But having experienced an innovative cough assist that combines a high-frequency homecare mode (not requiring wall oxygen) that ventilates and gently teases deep-seated secretions from alveoli for a couple of minutes, before suctioning those same, now accessible secretions, out with the conventional cough assist mode, (and with fewer repetitions or cycles) I can say it gave us a better result (secretions) and lessened anxiety.

    I don’t have a financial interest but a sadness after losing 5 ePals with various kinds of NMD to pneumonia in 2019 before many of us hibernated during the pandemic. Who knows if this hybrid state-of-the-art cough assist, which the Europeans believe will help someone on the brink after a conventional cough assist is no longer effective, might have helped them?  But I do wonder and I worry that we haven’t thought enough about adding an extra tool to our respiratory kit bag for decades.

    I summarized my research and experience (n=1) in this tip sheet. At the very least we should be encouraging our therapists to put both IPV (clinical and homecare) to the test to develop an understanding of where and when this tool can be valuable. https://create.piktochart.com/output/10874100-cough-assist-review

    yours very truly

    Leah Leilani replied 2 years, 1 month ago 1 Member · 1 Reply
  • 1 Reply
  • Leah Leilani

    Member
    March 23, 2022 at 3:54 pm

    Thank you Deb for sharing this information! I have never used a cough assist of needed suctioning but I do get viral induced asthma and had a bad flare up in January brought on by a sinus infection. Coughing take so much energy and muscles to be effective and actually remove the built up mucus. I can only imagine how hard it is for people with a weaker lung function than me.

    • Deb Robins

      Member
      March 24, 2022 at 9:32 am

      Good to hear. There is a wide spectrum of severity and rates of progression within the NMD group of conditions.  Respiratory watershed moments are certainly unpredictable but because we network so well nowadays online,  they can be anticipated and we can prepare to some extent.  Here are those power failure and ventilator failure strategies I mentioned.

      Power failure Imperatives

      Portable Ventilator Precautions

       

Log in to reply.