the BreatheNVS site

Do you or does your family member or patient have

breathing muscle weakness for any reason?

 

If you have generalized muscle weakness, decreased breathing capacity, and a weak cough, then now is time to ASK YOUR DOCTOR about how to prevent respiratory failure and avoid invasive tubes. And if your doctor does not know about the benefits of noninvasive respiratory care, then today is the day to SHARE THIS INFORMATION with your physician.

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If you can understand and cooperate with basic instruction, and you have breathing and coughing muscle weakness due to one of these Applicable Conditions, then noninvasive ventilatory support (NVS) and mechanical insufflation-exsufflation (MIE) may help you to avoid episodes of serious breathing problems (e.g. respiratory failure), avoid the need for invasive airway tubes passed down the throat (e.g. endotracheal tubes), and avoid the need to resort to invasive airway tubes passed through the neck and into the windpipe (e.g. tracheostomy tubes), which cause increased morbidity and mortality.

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Previously, none of the ALS*, DMD*, SMA*, or other patient support networks provided information about how NVS and MIE can be used to avoid the need to resort to tracheostomy tubes. In fact, outcomes at centers for noninvasive respiratory management exceed those of other respiratory management strategies promoted by patient support networks in the following areas:

• Avoiding hospitalization,

• Avoiding the need to resort to invasive airway tubes, and

• Decreased morbidity and mortality from respiratory complications of muscle weakness.

 

The reasons that patient service networks fail to definitively promote humane respiratory management are considered in Most Common Mistakes and Impediments to Humane Noninvasive Management.

 

*Amyotrophic lateral sclerosis

*Duchenne muscular dystrophy

*Spinal muscular atrophy

 

 

WHO NEEDS BREATHENVS?

 

Anyone with weak or very dysfunctional breathing muscles who wants to:

• Prolong life expectancy,

• Maintain quality of life,

• Avoid episodes of serious breathing problems (i.e. respiratory failure),

• Avoid frequent hospitalizations,

• Avoid invasive airway tubes passed down the throat (i.e. endotracheal tubes),

• Avoid invasive airway tubes passed through the neck and into the windpipe (i.e. tracheostomy)

• Avoid a lifetime of ongoing institutionalization and/or nursing care.

 

Use of NVS and MIE allows for prolonged life expectancy while maintaining quality of life. In fact, NVS is preferred and considered by a strong majority of patients to be safer, more convenient and comfortable, and permits more normal speech production, swallowing, sleep, and appearance.

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If you desire these benefits, then you and your physician need the information on this website. And if your physician is reluctant or unable to provide you with preferred noninvasive respiratory care, then there are centers for noninvasive respiratory management where you can get instruction and equipment from expert physicians and respiratory therapists. Today, there are only a handful of centers in the United States who practice noninvasive respiratory management with NVS and MIE. As more patients and their families demand effective noninvasive respiratory care, more centers will begin to provide it.

 

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HOW WILL BREATHENVS HELP YOU?

 

We will empower you with information and encourage you to ask your doctor about preferred noninvasive respiratory care.

 

We lists centers for noninvasive respiratory management where you can get the instruction and equipment that may save a neck from invasive airway tubes passed through the neck and into the windpipe (e.g. tracheostomy tubes) and a lifetime of ongoing institutionalization and/or nursing care.

 

We believe that no baby, child, or adult (who can cooperate with basic instruction) needs a tracheostomy tube because of an inability to breathe or cough due to muscle weakness.