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Information about
Ventilator-Assisted Living

(continued, pg 2)

What is invasive positive pressure MV?

Invasive ventilation is via an endotracheal tube or a tracheotomy (a surgical opening in the windpipe to create an airway through which a tracheostomy tube is placed and connected by tubing to a positive pressure ventilator). Some individuals, such as those with ALS or muscular dystrophy, are unable to use noninvasive MV due to bulbar muscle impairment and/or may not find it as effective as invasive ventilation, particularly if 24-hour ventilation is needed. There are several types of tracheostomy tubes available.

The advantages of tracheostomy positive pressure ventilation include direct access to the upper airway, avoidance of upper airway obstruction, a face free of a nasal or facial mask, and a more secure and safer system when 16- to 24-hour support is needed.

Disadvantages include potential infection, irritation around the trache-ostomy, increased secretions upon initiation, increased caregiving due to removal of secretions by suctioning or a mechanical cough device, and more expensive equipment and related supplies. Special attention is needed for speech, such as the use of a speaking valve.

What is sleep-disordered breathing?

People with weak respiratory muscles often experience breathing abnormalities during sleep as the first indication of a problem. Signs include frequent arousals and fragmented sleep, and a reduction in the quality and efficiency of sleep. Underventilation typically occurs during REM sleep, leading to decreases in the level of oxygen saturation and increases in the carbon dioxide in the blood.

Apneas and hypopneas also occur. Apneas are defined as brief episodes when air stops moving in and out of the lungs during sleep for at least ten seconds; hypopneas are episodes when air movement is present but reduced. Some apnea episodes are considered normal; up to five per hour, but an increase in apnea episodes to more than ten per hour indicates the need for evaluation and treatment.

Obstructive sleep apnea (OSA), which is common in the general population, occurs when tissues in the throat collapse, intermittently blocking airflow during sleep. Central sleep apnea occurs when the brain fails to send appropriate signals to the body to initiate breathing, and there is neither airflow nor chest movement. Mixed apnea is a combination of the two.

When sleep apnea is suspected, a sleep study in a sleep laboratory or through home sleep studies can confirm the diagnosis. In people with sleep apnea, the standard treatment is CPAP.

Individuals with respiratory muscle weakness who are experiencing nocturnal breathing problems should be evaluated by a pulmonologist who is experienced in neuromuscular disease to determine whether the cause of the problems is underventilation or sleep apnea or both. Underventilation is optimally managed with MV.

What is CPAP?

CPAP (continuous positive airway pressure) units provide a continuous flow of air under the same level of pressure during inhalation and exhalation to help keep the airway open. CPAP is the standard treatment for obstructive sleep apnea; however, it does not assist with breathing and is not considered ventilation. New auto-titrating CPAP units deliver varying levels of pressures based on the detection of sleep-disordered breathing events and can change pressure on a breath-by-breath basis.

What is a bilevel positive airway pressure ventilator?

Bilevel ventilators were developed by modifying CPAP to also provide inspiratory positive airway pressure (IPAP) to assist inspiration (breathing in). IPAP and expiratory positive airway pressure (EPAP) settings are adjusted separately. People with neuromuscular disease and weak diaphragmatic muscles often may have difficulty breathing in and need IPAP set higher than EPAP, e.g., an IPAP of 14 and an EPAP of 3. The difference between IPAP and EPAP is called the span, and in these cases should be at least 10.

Bilevel units are made by several manufacturers and are often generically referred to as BiPAP. The only bilevels that can be called BiPAP^® are the units patented and registered by one manufacturer.

Bilevels are used primarily at night with a nasal, facial or oral mask, or nasal pillows. Some people use them continuously, but there is no FDA approval for such use in the home. (An alternative for 24-hour use is a volume-cycled ventilator – see page 10). The FDA has not approved them for off-label use by people with tracheostomies, although some physicians prescribe them, particularly for infants and children.

Three modes are available with bilevel ventilators:

• “S” or spontaneous breathing patterns that are sensed so that the unit switches between prescribed pressures;
• “T” or timed mode that delivers IPAP and EPAP at a predetermined breathing rate;
• “S/T” or spontaneous/timed that operates in spontaneous mode, but switches to timed mode (referred to as a backup rate) when breaths are not initiated by the individual.

People with neuromuscular disease should use a bilevel ventilator with a backup rate that can initiate breaths, particularly at night.

The advantages of bilevel ventilators are small size, light weight, lower cost and compensation for interface leaks. The disadvantages include lack of internal batteries, no or few alarms, inadequate pressures for some people, use of more electricity to operate and discomfort from EPAP.

Examples include BiPAP^® Synchrony^TM (Respironics Inc., www.respironics.com), VPAP^® III ST-A (ResMed Corp., www.resmed.com), and KnightStar® 330 (Puritan Bennett, www.puritanbennett.com).

What is a volume-cycled ventilator?

Volume-cycled ventilators deliver a preset volume of air during inspiration. Volume ventilators can deliver higher volumes and pressures than bilevel units, although the volume remains constant despite leaks. The pressure limit can be adjusted by increasing the volume and lowering the high-pressure alarm.

Volume-cycled ventilators can be used for breath stacking (adding one breath to another without exhaling) to enable deeper breaths for improved cough. They also have multiple alarms and internal batteries, but they are larger, heavier and more expensive than bilevel units, although they generally use less electricity to operate. If an individual needs 24-hour ventilation, a volume ventilator is recommended because it is approved by the FDA for this purpose and has the needed safety features.

Examples include PLV^®-100 (Respironics Inc., www.respironics.com) and LP10 (Puritan Bennett, www.puritanbennett.com). The Eole 3 XLS (Saime S.A., www.saime.fr) and PV 501-2 (BREAS Medical AB, www.breas.com) are popular in Europe.

What is a pressure support ventilator?

Pressure support ventilators, such as the TBird^® Legacy (VIASYS Health-care, www.viasyshealthcare.com), supplement the inspiratory effort of individuals who can breathe spontaneously by providing a preset amount of positive airway pressure throughout the complete inspiration. The tidal volume can vary from breath to breath. These ventilators also offer pressure control with the ventilator rather than the individual controlling the breathing rate.

The latest generation of ventilators, “multi-mode,” can provide pressure support, pressure control, volume support, bilevel pressure or CPAP.

Examples include Achieva^® (Puritan Bennett, www.puritanbennett.com), LTV^® series (Pulmonetic Systems, Inc., www.pulmonetic.com), HT50^® (Newport Medical Instruments, www.ventilators.com), PV403 PEEP (BREAS Medical AB, www.breas.com), and iVent 201^® (VersaMed, www.versamed.net).

What about ventilators for infants and children?

The choice of a ventilation system in infants and children involves several factors such as the child’s age; degree of respiratory impairment; need for positive end expiratory pressure (PEEP), pressure support and higher respiratory rates; and the resources and support systems at home.

Infants who are born prematurely often need a ventilator to help them breathe while in the Neonatal Intensive Care Unit (NICU). Others may have progressive and severe muscle weakness or severe aspiration that caused lung injury. These children usually require a tracheostomy to establish an artificial airway and to protect their developing airways.

Children’s ventilatory needs can vary from full respiratory support to partial respiratory support with some ventilator-free time. In children who can initiate a breath and only require night-time support, the use of noninvasive ventilation is increasing. Popular ventilators for pediatric use in the USA include LP10, Achieva^®, PLV^®-100, LTV^® series, HT50^® and TBird^® Legacy. In many developing countries, bilevel ventilators are often the only ventilators that are affordable and available for use.

What is a pneumobelt?

The pneumobelt, also known as an exsufflation belt, consists of an air bag or bladder inside a cloth corset that is worn around the abdomen and lower chest. The pneumobelt is connected by tubing to a positive pressure ventilator that alternatively inflates and deflates the bladder.

As the belt inflates, the abdominal contents are compressed and the abdomen rises, forcing air out of the lungs. When the belt deflates, the diaphragm is lowered and inhalation occurs passively. Because the pneumobelt works with gravity, it is most effective in the sitting and standing positions (at 45° and 90° angles) and cannot be used at night in the supine position.

What is frog breathing?

Many polio survivors learned to augment their breathing – without a ventilator – by frog breathing or glossopharyngeal breathing. Frog breathing uses the muscles of the tongue, soft palate, pharynx and larynx to force air into the lungs in a repetitive motion. However all the muscles of the tongue and throat must be functional. Frog breathing requires time and effort to learn, but once learned it can increase the amount of air in the lungs (known as vital capacity), improve cough, stretch the chest, provide better and louder speech, and can provide a person more ventilator-free time.

Which method and ventilator should be used?

The choice of ventilator can be made by your primary physician, or your primary physician may refer you to a pulmonologist (also known as a respirologist) who specializes in breathing-related disorders and lung conditions, and often sleep medicine. Some physical medicine and rehabilitation physicians, known as physiatrists, and some neurologists may also specialize in breathing disorders. In some countries only a pulmonologist can prescribe a ventilator.

After careful evaluation and pulmonary function tests to assess breathing and lung function and capacity (and sometimes a sleep study), the physician recommends a type of ventilator and appropriate interfaces. Individuals who need to use ventilation only at night have different equipment requirements than those who need to use a ventilator around the clock. Sometimes an individual may not be comfortable with a specific ventilator or interface and may need to change the ventilator or interfaces in order to find the most comfortable and effective system.

Some ventilator users combine different methods and ventilators and alternate them, such as using mouthpiece intermittent positive pressure ventilation during the day, augmented by frog breathing and then a nasal mask at night.

How do I obtain the equipment?

The physician writes a prescription that you present to a home health care or medical equipment company. In the USA, physicians work with respiratory therapists in home health care companies that provide the equipment, supplies, and education, training and monitoring. In many countries, respiratory therapy has not developed as a recognized and licensed profession as it has in the USA. Instead, physical therapists (physiotherapists) and/or nurses may assume these tasks. Some large medical centers may provide home health care and education and training in the use of the ventilator at home.

Who pays for the equipment?

In the USA, private insurance carriers generally reimburse for the equipment and related supplies according to their policies, as do Medicare and Medicaid. In countries with universal health care, the ventilator and supplies are usually supplied for free. Other countries have developed systems to cover equipment costs; some also provide personal assistance/attendant care.

What if something goes wrong with the ventilator?

Ventilator users and their caregivers must be prepared for equipment failure, disconnects and power outages, especially if using 24-hour MV, in which case a backup ventilator is prudent. Practicing regular safety drills helps prepare for emergencies. Keeping a manual resuscitator, such as an Ambu^® bag, handy at all times is strongly advised.

Will I need specialized care? Can I live at home?

This depends on the medical diagnosis that necessitated the use of MV, and also whether you use MV fulltime. Many part-time and full-time ventilator users live independently. Some people with progressive neuro-muscular diseases may require nurses or attendants/personal assistants who can be trained in the use of the equipment and secretion removal techniques. Children who use 24-hour MV often need nurses to assist their parents in their care.

People who use long-term MV generally prefer to live at home with their families, and many do. They go to school and work; they travel; they participate in their communities; and many rate their quality of life as high. However, if the needed resources cannot be arranged for home care, some long-term ventilator users are placed in skilled nursing facilities.

Where can I find more information?

IVUN’s Resource Directory for Ventilator-Assisted Living identifies health professionals and ventilator users who are knowledgeable about long-term ventilator use, ventilator equipment and interface manufacturers, and health organizations.

Many organizations such as The ALS Association, The Muscular Dystrophy Association, The Parent Project for Muscular Dystrophy, Families of SMA and CCHS Family Network provide information on their websites, publish handbooks and guides, and distribute videos on ventilator-assisted living. The ventilator equipment and mask manufacturers provide product information and specifications on their websites.

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