There are ways to help your lungs to function as well as they can, for a long time.

  • It may be helpful to use ways to increase the amount of air that can enter the lungs by stretching breathing muscles through deep breathing (“lung volume recruitment,” lung inflation or breath stacking techniques)
  • If coughing becomes weak, manual or mechanically assisted cough techniques (“cough assist”) are helpful to clear the airway and keep mucous and germs out of the lungs. This reduces the risk of pneumonia
  • With time, support will be needed initially for breathing overnight (non-invasive nocturnal assisted ventilation via bi-level airway pressure, or Bi-PAP) and then later during the daytime (non-invasive daytime assisted ventilation) as symptoms listed under the surveillance section develop
  • The transition to assisted ventilation can be difficult to get used to. There are many different types of “interfaces” (masks and mouthpieces) that you can use. It is important to find an interface that is right for you. Your pulmonary team can offer various different types of interfaces until they find the most comfortable type for you
  • Ventilation may also be assisted via a surgically placed tube in the trachea, at the base of the throat (“tracheostomy tube”) depending on local practice. This is known as invasive ventilatory support. There are no guidelines as to when a tracheostomy might be needed. It is often a personal decision between you and your respiratory specialist
  • The above interventions can help to keep you breathing more easily and avoid acute respiratory illnesses
  • It is essential to keep up with your vaccination schedule, including the pneumococcal and annual influenza vaccine. People living with Duchenne should always opt for the influenza injection, rather than the live virus nasal spray
  • Particular attention to breathing is required around the time of planned surgery
  • If you get a respiratory infection, ask for antibiotics in addition to the use of manually or mechanically assisted cough
  • Always use caution if supplemental oxygen is necessary; be sure medical personnel know to use non-invasive bi-level positive airway pressure ventilation at the same time, and to monitor your carbon dioxide (CO2) levels closely