Scenario 4: No one can help me start mouthpiece ventilation.
Mouthpiece ventilation (MPV) is a form of volume-based daytime non-invasive ventilation. It can help individuals with Neuromuscular Disease (NMD) who can close and seal their lips over a mouthpiece* during sipping and the resistance of airflow and can close off their soft palate so a significant amount of air does not escape the nose. In the United States (US), a surprising lack of knowledge about MPV exists even among clinicians specializing in neuromuscular breathing weakness. Those living with NMD who use MPV share the benefits they experience from this portable, ventilator-requiring intervention with their NMD peers and care team.
“Questionnaires were obtained from 30 subjects (mean age 33 ± 11 y) using NIV for 12 ± 7 y. Fifteen subjects used NIV for > 20 h/day, and 11 were totally ventilator-dependent. The subject-reported benefits of mouthpiece ventilation were a reduction in dyspnea (73%) and fatigue (93%) and an improvement in speech (43%) and eating (27%).” Reference: Khirani, Sonia, et al. “Evaluation of Ventilators for Mouthpiece Ventilation in Neuromuscular Disease.” Respiratory Care, vol. 59, no. 9, 2014, pp. 1329–1337, https://doi.org/10.4187/respcare.03031. https://rc.rcjournal.com/content/59/9/1329
Some in the Breathe community have had experiences with respiratory care companies (DMEs) and/or ordering clinicians who have never implemented MPV for another patient and are reluctant or refuse to do so. Some use the excuse that they don't know what respiratory supplies and/or ventilator settings to order. When MPV could enhance one's quality of life, settling for a no in this case is not acceptable. This is an instance where advocating (speaking up) is necessary to get the care you need, even if that means using a different provider who is already familiar with MPV or willing to learn.
The DME, the ordering clinician, or anyone who does an Internet browser search can quickly find training and clinical guides for ventilators that detail enabling MPV mode settings and more. Many ventilator manufacturers (Philips Respironics, ResMed, Breas, Löwenstein Medical International, etc.) cover setting up MPV in YouTube tutorial videos, and there are many other informative MPV videos by credible sources. MPV is an opportunity for lesser experienced clinicians to gain new knowledge and offer more to their NMD patient caseload.
Each ventilator brand has its own MPV mode of ventilation, and MPV settings are enabled as a second or separate prescription/program within the ventilator settings. The Breathe with MD Support Group has members who use MPV and can answer your questions and provide photos of their setup (hands-free or otherwise) and share how they have made MPV work for them.
Wondering if MPV might be right for you? See the following links for additional information.
*standard mouthpiece sizes: 15 mm angled, 22 mm angled, and 5”x ¼” diameter straw
Mouthpiece ventilation (MPV) is a form of volume-based daytime non-invasive ventilation. It can help individuals with Neuromuscular Disease (NMD) who can close and seal their lips over a mouthpiece* during sipping and the resistance of airflow and can close off their soft palate so a significant amount of air does not escape the nose. In the United States (US), a surprising lack of knowledge about MPV exists even among clinicians specializing in neuromuscular breathing weakness. Those living with NMD who use MPV share the benefits they experience from this portable, ventilator-requiring intervention with their NMD peers and care team.
“Questionnaires were obtained from 30 subjects (mean age 33 ± 11 y) using NIV for 12 ± 7 y. Fifteen subjects used NIV for > 20 h/day, and 11 were totally ventilator-dependent. The subject-reported benefits of mouthpiece ventilation were a reduction in dyspnea (73%) and fatigue (93%) and an improvement in speech (43%) and eating (27%).” Reference: Khirani, Sonia, et al. “Evaluation of Ventilators for Mouthpiece Ventilation in Neuromuscular Disease.” Respiratory Care, vol. 59, no. 9, 2014, pp. 1329–1337, https://doi.org/10.4187/respcare.03031. https://rc.rcjournal.com/content/59/9/1329
Some in the Breathe community have had experiences with respiratory care companies (DMEs) and/or ordering clinicians who have never implemented MPV for another patient and are reluctant or refuse to do so. Some use the excuse that they don't know what respiratory supplies and/or ventilator settings to order. When MPV could enhance one's quality of life, settling for a no in this case is not acceptable. This is an instance where advocating (speaking up) is necessary to get the care you need, even if that means using a different provider who is already familiar with MPV or willing to learn.
The DME, the ordering clinician, or anyone who does an Internet browser search can quickly find training and clinical guides for ventilators that detail enabling MPV mode settings and more. Many ventilator manufacturers (Philips Respironics, ResMed, Breas, Löwenstein Medical International, etc.) cover setting up MPV in YouTube tutorial videos, and there are many other informative MPV videos by credible sources. MPV is an opportunity for lesser experienced clinicians to gain new knowledge and offer more to their NMD patient caseload.
Each ventilator brand has its own MPV mode of ventilation, and MPV settings are enabled as a second or separate prescription/program within the ventilator settings. The Breathe with MD Support Group has members who use MPV and can answer your questions and provide photos of their setup (hands-free or otherwise) and share how they have made MPV work for them.
Wondering if MPV might be right for you? See the following links for additional information.
- https://www.youtube.com/watch?v=OX4LTaELoPs - Dr. John R. Bach talks about the use of mouthpiece ventilation.
- https://youtu.be/2komtjAQIP4 - This CANVent-produced video features an individual living with Duchenne Muscular Dystrophy (DMD) who uses mouthpiece ventilation.
- https://breathewithmd.org/ask-andrea/when-to-start-mouthpiece-ventilation - Our founder shares her personal perspective about mouthpiece ventilation use.
*standard mouthpiece sizes: 15 mm angled, 22 mm angled, and 5”x ¼” diameter straw