Scenario 6: I'm on bi-level ventilation but experiencing symptoms I had before starting breathing support.
The same way that our other muscle groups become weaker, in many forms of Neuromuscular Disease (NMD), so do the breathing muscles. That means that the fully supportive, comfortable settings we may have worked hard to achieve could need to change over time.
How you will know a change is needed?
You could experience new fatigue and/or daytime sleepiness, require more hours of sleep to feel as rested as you did previously, and/or may develop new shortness of breath. Others that are monitoring their oxygen saturation during the day may find that after a certain time of day, their oxygen saturation drops consistently and does not improve with use of an insufflation exsufflation device/mechanical cough assistance. Any one or more of these symptoms could signal the need for a change in nighttime settings and warrant a prompt phone call or patient portal message to your noninvasive ventilation prescriber.
The typical process toward resolution
When symptoms return, for adults, some doctors will order an overnight Oximetry stuff (sometimes called an at-home sleep study). If only Oxygen Saturation is monitored during sleep, that's only part of the picture. To have a fuller picture, you might want your doctor to order continuous, painless measurement of exhaled Carbon Dioxide through a connected capnography device (which requires that you are using active circuit ventilation to get an accurate read) or painless continuous Carbon Dioxide measurement transcutaneously (through skin) via a sensor or sensors.
Some individuals with NMD find they can relieve symptoms by introducing daytime use of ventilation or by increasing their existing nighttime and/or daytime hours of ventilation. These are things that one might try as they await a new plan of care from their clinician.
Adjusting a setting (i.e. IPAP, tidal volume, EPAP, etc.) may resolve your symptoms, but some need to switch from one mode of ventilation to another (for example a move from BiPAP S/T to AVAPS S/T, AVAPS AE, etc.). There are several modes of ventilation within the realm of noninvasive ventilation, and some are only offered on multi-mode, multi-prescription, portable ventilators such as the Trilogy, Astral, Vivo, and similar devices, necessitating a change in type of device prescribed. A change in breathing function is why many switch from a basic bi-level device to a more fully featured ventilator, to have additional options, customization of the delivered breath, and more flexibility as needs change during disease progression.
A return of symptoms could be resolved by starting portable, volume-based mouthpiece ventilation (best suited to those who can form a lip seal on an angled mouthpiece or straw-type mouthpiece and close off their soft palate to prevent air from escaping). Mouthpiece ventilation (MPV) does require a portable ventilator as it cannot be enabled on a basic bi-level device.
Settings changes on the existing device or a new one always require the coordination of both the device prescriber and the Respiratory Therapist (RT) at your respiratory care DME (Durable Medical Equipment provider), working with you to try different options. Most RTs work for companies that require a medical provider’s order to support the settings change(s). This can get complicated very quickly, but what may help to simplify your settings change process is to contact BOTH your neuromuscular breathing specialist and your RT about your symptoms; get them on the same page. The doctor should then make a determination of which settings might be beneficial to change and fax an order to the RT at the respiratory care company with a range of changes agreed to.
For each potential setting change to consider, the doctor can list an agreeable range for the change, and the RT can come over to make each setting change (preferably only one at a time), allowing you to try one change for a few days or even up to two weeks. Once a final selection of any one or more setting change(s) is/are made, the RT and you will determine whether or not to introduce another change the physician has authorized. It's not a good idea to change more than one setting at the same time, because if you see improvement in or resolution of your symptoms, you won’t know which setting change made the difference or if both did. When the final selection of settings is made, the RT will fax the physician with those details. Then the physician will write and fax a new order without the ranges and just list the specific values agreed upon. An updated order is filed in your chart with the respiratory equipment provider (DME).
But what if the clinician insists that your settings do NOT need to change or refuses to change them?
That’s when it is time to push back and explain why you disagree. It may be time to find a different pulmonary specialist, particularly if the one you are seeing does not specialize in neuromuscular breathing weakness.
We know the settings change process can be lengthy, challenging, and frustrating. Many others living with NMD have been through this and can offer their support through the Breathe with MD Support Group.
The same way that our other muscle groups become weaker, in many forms of Neuromuscular Disease (NMD), so do the breathing muscles. That means that the fully supportive, comfortable settings we may have worked hard to achieve could need to change over time.
How you will know a change is needed?
You could experience new fatigue and/or daytime sleepiness, require more hours of sleep to feel as rested as you did previously, and/or may develop new shortness of breath. Others that are monitoring their oxygen saturation during the day may find that after a certain time of day, their oxygen saturation drops consistently and does not improve with use of an insufflation exsufflation device/mechanical cough assistance. Any one or more of these symptoms could signal the need for a change in nighttime settings and warrant a prompt phone call or patient portal message to your noninvasive ventilation prescriber.
The typical process toward resolution
When symptoms return, for adults, some doctors will order an overnight Oximetry stuff (sometimes called an at-home sleep study). If only Oxygen Saturation is monitored during sleep, that's only part of the picture. To have a fuller picture, you might want your doctor to order continuous, painless measurement of exhaled Carbon Dioxide through a connected capnography device (which requires that you are using active circuit ventilation to get an accurate read) or painless continuous Carbon Dioxide measurement transcutaneously (through skin) via a sensor or sensors.
Some individuals with NMD find they can relieve symptoms by introducing daytime use of ventilation or by increasing their existing nighttime and/or daytime hours of ventilation. These are things that one might try as they await a new plan of care from their clinician.
Adjusting a setting (i.e. IPAP, tidal volume, EPAP, etc.) may resolve your symptoms, but some need to switch from one mode of ventilation to another (for example a move from BiPAP S/T to AVAPS S/T, AVAPS AE, etc.). There are several modes of ventilation within the realm of noninvasive ventilation, and some are only offered on multi-mode, multi-prescription, portable ventilators such as the Trilogy, Astral, Vivo, and similar devices, necessitating a change in type of device prescribed. A change in breathing function is why many switch from a basic bi-level device to a more fully featured ventilator, to have additional options, customization of the delivered breath, and more flexibility as needs change during disease progression.
A return of symptoms could be resolved by starting portable, volume-based mouthpiece ventilation (best suited to those who can form a lip seal on an angled mouthpiece or straw-type mouthpiece and close off their soft palate to prevent air from escaping). Mouthpiece ventilation (MPV) does require a portable ventilator as it cannot be enabled on a basic bi-level device.
Settings changes on the existing device or a new one always require the coordination of both the device prescriber and the Respiratory Therapist (RT) at your respiratory care DME (Durable Medical Equipment provider), working with you to try different options. Most RTs work for companies that require a medical provider’s order to support the settings change(s). This can get complicated very quickly, but what may help to simplify your settings change process is to contact BOTH your neuromuscular breathing specialist and your RT about your symptoms; get them on the same page. The doctor should then make a determination of which settings might be beneficial to change and fax an order to the RT at the respiratory care company with a range of changes agreed to.
For each potential setting change to consider, the doctor can list an agreeable range for the change, and the RT can come over to make each setting change (preferably only one at a time), allowing you to try one change for a few days or even up to two weeks. Once a final selection of any one or more setting change(s) is/are made, the RT and you will determine whether or not to introduce another change the physician has authorized. It's not a good idea to change more than one setting at the same time, because if you see improvement in or resolution of your symptoms, you won’t know which setting change made the difference or if both did. When the final selection of settings is made, the RT will fax the physician with those details. Then the physician will write and fax a new order without the ranges and just list the specific values agreed upon. An updated order is filed in your chart with the respiratory equipment provider (DME).
But what if the clinician insists that your settings do NOT need to change or refuses to change them?
That’s when it is time to push back and explain why you disagree. It may be time to find a different pulmonary specialist, particularly if the one you are seeing does not specialize in neuromuscular breathing weakness.
We know the settings change process can be lengthy, challenging, and frustrating. Many others living with NMD have been through this and can offer their support through the Breathe with MD Support Group.