As I have grown accustomed to being on a ventilator, I have become less frightened to try new things and have found that sometimes changing things can lead to great improvements to quality of life.
When I became a ventilator dependent quadriplegic in 2002, I quickly grew to appreciate the simple things that are often taken for granted. Even something as basic as breathing in and out on your own. There are many different reasons people become ventilator dependent, or need a ventilator and/or oxygen to support their breathing efforts. Regardless of these differences, the transition from breathing independently to relying on a mechanical device can be disconcerting. Below are thoughts to keep in mind for people transitioning to a ventilator:
Adjust the settings to your comfort. The loss of the ability to breathe on my own left me feeling very anxious whenever any settings were changed on my equipment. However, I reminded myself that even though it is sometimes uncomfortable at first, change can lead to improvement. You do not have to settle for the initial ventilator settings. There are a variety of setting adjustments, both small and large, which can be made to make you feel comfortable and well ventilated. When I transitioned from the LTV 800 to VOCSN last year, I had to adjust the settings to fit me, including tidal volume and inspiratory time to customize my breathing on VOCSN. This required patience to tweak each setting and test the results.
Secure the ventilator connection at the trach site to help eliminate the majority of unintentional tubing disconnections. I use a thin piece of velcro to secure the ventilator tubing to my trach tie.
Establishing a plan for what you and your caregivers will do in the event that there is a disconnect, or ventilator malfunction, can also help to alleviate some of the anxiety when first becoming ventilator-dependent. There is an emergency back-up breathing technique that some people are able to use short-term in case of a ventilator failure called glossopharyngeal breathing (GPB).
Additionally, it is important to develop an alternative way to communicate in the event that you are unable to speak, or if you have a cuffed trach. I found a noise that I could make with just my mouth to get people’s attention and developed non-speaking codes to allow for communication without speaking with an inflated cuff. In addition, the use of speaking valves and settings adjustments on the ventilator can improve oral communication.
Strengthening your glottis and vocal cords will help improve your respiratory health and speaking ability. A respiratory therapist or speech pathologist can help teach you exercises to support this effort.
Managing secretions is not only important for good health, but can also help keep you more comfortable by improving oxygenation. Staying well hydrated will keep secretions loose and thin, allowing for easier removal. I ensure that I stay hydrated by drinking warm tea all day long. Whatever you can do to reduce secretion levels is beneficial. I found that less invasive methods of secretion management helped to reduce secretions, while more invasive interventions exacerbated the problem. For example, using cough assist, instead of suction therapy, is one way I reduce the invasiveness of secretion removal.
As I have grown accustomed to being on a ventilator, I have become less frightened to try new things and have found that sometimes changing things can lead to great improvements to quality of life. Do not be afraid to work with your doctor and caregivers to personalize your care.
Loa’s Quick Tips
- Adjust your ventilator settings to make them comfortable.
- Secure the ventilator connection at the trach site.
- Establish a protocol for patients and caregivers to follow in the event of a ventilator disconnection or malfunction.
- Find a nonverbal cue to get people’s attention in emergency situations.
- Improve oral communication with the use of speaking valves and setting adjustments.
- Keep well hydrated – consider drinking tea throughout the day.
- Reduce the invasiveness of secretion removal as much as possible.
- Strengthen glottis and vocal cords. Consider speech therapy.
The views expressed by Loa are not necessarily the view of the Ventec Life Systems, its members or the clinical board. These blog posts are the personal experiences of Loa. The blog posts are not intended to provide clinical advice or training related to VOCSN. Always consult a physician or trained clinician prior to using VOCSN. Please refer to the VOCSN Clinical and Technical Manual for detailed instructions, including indications and contraindications for use. VOCSN is available by prescription only.