Scenario 5: I am being forced to get a ventilator that prevents me from talking.
Respiratory care companies, also referred to as Durable Medical Equipment (DME) providers, sometimes decide to end their continuous, non-capping rental for a particular home-use ventilator, replacing the patient's unit with a different model ventilator for their rental. The company with which the DME contracts to service ventilators may no longer perform maintenance and repairs on a specific ventilator brand or its model(s). Other times, ventilator models are recalled by their manufacturer and/or the FDA. Sometimes these life-support devices are even discontinued by their manufacturer, making obtaining parts to keep them in safe, working order difficult or impossible. No matter the situation, it's rarely ever a change that the patient welcomes.
Those who use invasive ventilation via a trach tube stand to suffer the most during ventilator changes as their ability to talk while using mechanical ventilation could vary from one ventilator brand or model to another, requiring any number of changes in their "setup” to be made. An initial trial of a different home-use ventilator may go extremely well, but sometimes the individual finds they are no longer able to speak as well or at all while using a different ventilator. This can be upsetting and frightening to the individual. Changes may need to be made in one or more of the following to maintain the ability to speak on a different home-use ventilator.
Below we've assembled some tips that may assist in this scenario.
Have you lived through changing from one home-use ventilator to another with invasive ventilation and maintained your ability to speak on the replacement device? Share with us how you self-advocated through this scenario and what worked for you.
Respiratory care companies, also referred to as Durable Medical Equipment (DME) providers, sometimes decide to end their continuous, non-capping rental for a particular home-use ventilator, replacing the patient's unit with a different model ventilator for their rental. The company with which the DME contracts to service ventilators may no longer perform maintenance and repairs on a specific ventilator brand or its model(s). Other times, ventilator models are recalled by their manufacturer and/or the FDA. Sometimes these life-support devices are even discontinued by their manufacturer, making obtaining parts to keep them in safe, working order difficult or impossible. No matter the situation, it's rarely ever a change that the patient welcomes.
Those who use invasive ventilation via a trach tube stand to suffer the most during ventilator changes as their ability to talk while using mechanical ventilation could vary from one ventilator brand or model to another, requiring any number of changes in their "setup” to be made. An initial trial of a different home-use ventilator may go extremely well, but sometimes the individual finds they are no longer able to speak as well or at all while using a different ventilator. This can be upsetting and frightening to the individual. Changes may need to be made in one or more of the following to maintain the ability to speak on a different home-use ventilator.
- circuit type (passive or active)
- mode/program of ventilation
- pressure, volume, or other settings value changes (increases or decreases)
- type of trach tube used (cuffed, uncuffed, fenestrated)
- a different size trach tube
- use of a speaking valve
Below we've assembled some tips that may assist in this scenario.
- Know what the settings are on your current ventilator. It is a prescription, so you have the right to know the details and should store a list and/or photos of your settings in a safe place.
- Make sure all parties involved are aware this change is being planned. For example, if the DME is forcing this change, be sure your ventilator-ordering clinician knows. He or she will likely be required to supply a new order with settings before the DME can make the ventilator swap.
- Make it known to all parties involved that your continued ability to speak must be a high priority in this device change.
- Ask The Respiratory Therapist sent by the respiratory care company/DME and your clinician to communicate with each other and you about how they will ensure this transition is smooth and that settings enabled on the new device will allow continued speaking. Extra effort and research may be required of them; that is part of their job.
- Ask to have your existing ventilator left in your possession while trying any other home-use ventilator. Keeping one’s previous device for one to two weeks is common.
- Check out this webpage that covers “Ten Communication Options for Individuals with Tracheostomy and/or Mechanical Ventilation,” as it includes a wealth of information. Be sure to see the section labeled, "Oral Communications Options for Tracheostomy and Mechanical Ventilation."
- Talk to others who have experienced this scenario and had to advocate to ensure they could continue speaking on a different home-use ventilator. If you have not already and you are living with a Neuromuscular Disease (NMD), join the Breathe with MD Support Group. Search the group for this topic and/or create a new post about it.
- Lastly, be patient. You may find that it takes time to adjust to the different device. Talking may seem more difficult initially, but over time it may require less effort as you adapt to the different home-use ventilator.
Have you lived through changing from one home-use ventilator to another with invasive ventilation and maintained your ability to speak on the replacement device? Share with us how you self-advocated through this scenario and what worked for you.