International Ventilator Users Network

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The International Ventilator Users Network (IVUN) [1] is a nonprofit network of mechanical ventilation users, respiratory health professionals, and ventilatory equipment manufacturers. Its focus is on the health and independent living of ventilator users, whether they are using assisted ventilation long-term – at home or in nursing facilities—or short-term in emergency rooms and critical care units.

Contents

Many ventilator users have neuromuscular conditions, such as respiratory polio or post-polio syndrome, amyotrophic lateral sclerosis (ALS), muscular dystrophy, spinal muscular atrophy (SMA), spinal cord injury (SCI), or congenital central hypoventilation syndrome (CCHS). Historically, IVUN's efforts have been primarily addressed to ventilator users with neuromuscular conditions. But people who have chronic obstructive pulmonary disease (COPD) or obesity hypoventilation syndrome may also need to use assisted ventilation.

Mission

IVUN's mission is “to enhance the lives and independence” of ventilator users “through education, advocacy, research, and networking” among ventilator uses, respiratory health professionals, and ventilatory equipment manufacturers. [2] Support comes from individual members, donors, and sponsors.

IVUN's parent organization is Post-Polio Health International (PHI). [3] It shares that organization's headquarters and staff in St. Louis, Missouri, as well as its volunteer Board of Directors. IVUN's publications, website, and volunteer advisory boards are its own, however.

Current activities

Education

IVUN publishes (both online and in print) authoritative medical information based on interaction between ventilator users and healthcare professionals. Currently, users can find online free of charge a 16-page introductory document describing the history of ventilators, the various types of ventilators, and the types of user-interfaces; [4] a packet of documents dealing with emergency medical care for home ventilator users (checklists for users, caregivers, physicians, and Emergency medical services personnel); [5] and a comprehensive Home Ventilator Guide which provides technical information on home/portable ventilator equipment from manufacturers worldwide. [6] Past issues of IVUN's quarterly newsletter, Ventilator-Assisted Living, are also online. [7] IVUN's staff maintain a telephone answer-line and answer e-mail inquiries during business hours.

Networking

IVUN publishes, and makes available free online, the Resource Directory for Ventilator-Assisted Living, [8] which lists respiratory health professionals who are experts in long-term assisted ventilation, ventilatory equipment manufacturers and their contact information, and organizations whose members use assisted ventilation. IVUN's website manages an equipment exchange, a peer-to-peer advice page, and ventilator news digests.

IVUN staff regularly attend medical meetings and international conferences on home ventilator use, and coordinate presentations by ventilator users at medical meetings such as those for the American College of Chest Physicians (ACCP). In addition, IVUN/PHI's periodic international conferences present many sessions relevant to ventilator users.

Advocacy and Research

With respect to advocacy and research, IVUN's activities are integrated with those of PHI. A recent research grant of direct relevance to ventilator users is a study, conducted in 2005 by a team at Johns Hopkins University, on the “Timing of Noninvasive Ventilation for Patients with Amyotrophic Lateral Sclerosis.” An earlier research award (2001) went to researchers at the University of Toronto, Canada for a study on ”Ventilator Users' Perspectives on the Important Elements of Health-Related Quality of Life.” [9]

History

IVUN was formally established under that name in 1987, but its roots go back to the polio epidemics of the 1940s and 1950s, when the possibility of long-term survival with mechanically assisted ventilation became a reality. Beginning in 1949, IVUN's founder, Gini Laurie, was an American Red Cross volunteer in the polio wards of Cleveland's City Hospital, and later in the part of that hospital (Toomey Pavilion) that became one of the 15 respiratory care and rehabilitation hospitals funded by the March of Dimes. Those centers all across the country began to close after the polio epidemics in the United States ended. Laurie, however, was determined to keep the respiratory polio survivors in touch with each other, and with their medical specialists.

She did this first by taking over the editorship of Toomey Pavilion's alumni newsletter, the Toomeyville Jr. Gazette, and circulating it widely throughout the United States. Copies also went to individuals and organizations in Canada, Great Britain, Europe, and Australia. In 1960, her informal organization of volunteers was incorporated under the name Iron Lung Polio Assistance, and her newsletter grew into a magazine called the Toomey j. Gazette. In 1964, the organization changed its name to Iron Lung Polios and Multiplegics, to reflect more accurately Laurie's cross-disability concerns. The magazine became the Rehabilitation Gazette in 1970, carrying a wide range of articles on independent living for people with physical disabilities. Laurie soon became one of the central figures in the development of the independent living movement and in the founding of the Centers for Independent Living in the United States.

Laurie's central concerns, however, always included ventilator users. Specifically, they concerned finding ways for ventilator users to leave hospitals and nursing homes with the support necessary for them to live active, effective lives as members of their communities. As some cross-disability organizations such as the American Coalition of Citizens with Disabilities (ACCD) dissolved into disability-specific organizations, IVUN was formed to make sure there were publications and networks specifically for long-term ventilator users.

See also

Related Research Articles

<span class="mw-page-title-main">Ventilator</span> Device that provides mechanical ventilation to the lungs

A ventilator is a piece of medical technology that provides mechanical ventilation by moving breathable air into and out of the lungs, to deliver breaths to a patient who is physically unable to breathe, or breathing insufficiently. Ventilators are computerized microprocessor-controlled machines, but patients can also be ventilated with a simple, hand-operated bag valve mask. Ventilators are chiefly used in intensive-care medicine, home care, and emergency medicine and in anesthesiology.

<span class="mw-page-title-main">Mechanical ventilation</span> Method to mechanically assist or replace spontaneous breathing

Mechanical ventilation, assisted ventilation or intermittent mandatory ventilation (IMV), is the medical term for using a machine called a ventilator to fully or partially provide artificial ventilation. Mechanical ventilation helps move air into and out of the lungs, with the main goal of helping the delivery of oxygen and removal of carbon dioxide. Mechanical ventilation is used for many reasons, including to protect the airway due to mechanical or neurologic cause, to ensure adequate oxygenation, or to remove excess carbon dioxide from the lungs. Various healthcare providers are involved with the use of mechanical ventilation and people who require ventilators are typically monitored in an intensive care unit.

<span class="mw-page-title-main">Iron lung</span> Type of negative pressure mechanical respirator

An iron lung is a type of negative pressure ventilator (NPV), a mechanical respirator which encloses most of a person's body, and varies the air pressure in the enclosed space, to stimulate breathing. It assists breathing when muscle control is lost, or the work of breathing exceeds the person's ability. Need for this treatment may result from diseases including polio and botulism and certain poisons.

<span class="mw-page-title-main">Obesity hypoventilation syndrome</span> Condition in which severely overweight people fail to breathe rapidly or deeply enough

Obesity hypoventilation syndrome (OHS) is a condition in which severely overweight people fail to breathe rapidly or deeply enough, resulting in low oxygen levels and high blood carbon dioxide (CO2) levels. The syndrome is often associated with obstructive sleep apnea (OSA), which causes periods of absent or reduced breathing in sleep, resulting in many partial awakenings during the night and sleepiness during the day. The disease puts strain on the heart, which may lead to heart failure and leg swelling.

<span class="mw-page-title-main">Central hypoventilation syndrome</span> Medical condition

Central hypoventilation syndrome (CHS) is a sleep-related breathing disorder that causes ineffective breathing, apnea, or respiratory arrest during sleep. CHS can either be congenital (CCHS) or acquired (ACHS) later in life. The condition can be fatal if untreated. CCHS was once known as Ondine's curse.

<span class="mw-page-title-main">Artificial ventilation</span> Assisted breathing to support life

Artificial ventilation is a means of assisting or stimulating respiration, a metabolic process referring to the overall exchange of gases in the body by pulmonary ventilation, external respiration, and internal respiration. It may take the form of manually providing air for a person who is not breathing or is not making sufficient respiratory effort, or it may be mechanical ventilation involving the use of a mechanical ventilator to move air in and out of the lungs when an individual is unable to breathe on their own, for example during surgery with general anesthesia or when an individual is in a coma or trauma.

<span class="mw-page-title-main">Non-invasive ventilation</span>

Non-invasive ventilation (NIV) is the use of breathing support administered through a face mask, nasal mask, or a helmet. Air, usually with added oxygen, is given through the mask under positive pressure; generally the amount of pressure is alternated depending on whether someone is breathing in or out. It is termed "non-invasive" because it is delivered with a mask that is tightly fitted to the face or around the head, but without a need for tracheal intubation. While there are similarities with regard to the interface, NIV is not the same as continuous positive airway pressure (CPAP), which applies a single level of positive airway pressure throughout the whole respiratory cycle; CPAP does not deliver ventilation but is occasionally used in conditions also treated with NIV.

<span class="mw-page-title-main">Shallow breathing</span> Form of breathing in which minimal air is drawn into the lungs

Shallow breathing, thoracic breathing, costal breathing or chest breathing is the drawing of minimal breath into the lungs, usually by drawing air into the chest area using the intercostal muscles rather than throughout the lungs via the diaphragm. Shallow breathing can result in or be symptomatic of rapid breathing and hypoventilation. Most people who breathe shallowly do it throughout the day and they are almost always unaware of the condition.

Glossopharyngeal breathing is a means of pistoning air into the lungs to volumes greater than can be achieved by the person's breathing muscles. The technique involves the use of the glottis to add to an inspiratory effort by gulping boluses of air into the lungs. It can be beneficial for individuals with weak inspiratory muscles and no ability to breathe normally on their own.

<span class="mw-page-title-main">Intensive care unit</span> Hospital ward that provides intensive care medicine

An intensive care unit (ICU), also known as an intensive therapy unit or intensive treatment unit (ITU) or critical care unit (CCU), is a special department of a hospital or health care facility that provides intensive care medicine.

<span class="mw-page-title-main">History of polio</span> History of poliomyelitis infections

The history of polio (poliomyelitis) infections began during prehistory. Although major polio epidemics were unknown before the 20th century, the disease has caused paralysis and death for much of human history. Over millennia, polio survived quietly as an endemic pathogen until the 1900s when major epidemics began to occur in Europe. Soon after, widespread epidemics appeared in the rest of the world. By 1910, frequent epidemics became regular events throughout the developed world primarily in cities during the summer months. At its peak in the 1940s and 1950s, polio would paralyze or kill over half a million people worldwide every year.

Post-Polio Health International (PHI) is a relatively new name for a non-profit organization that officially began its work in 1960. For many years it was known in medical, rehabilitation, and disability circles variously as GINI, or the International Polio Network, or the Rehabilitation Gazette Network, or more familiarly as Gini’s Network, in honor of Gini Laurie, its founder and driving force until her death in 1989.

<span class="mw-page-title-main">Gini Laurie</span>

Virginia Grace Wilson "Gini" Laurie was a central figure in the 20th century development, in the United States, of the independent living movement for people with disabilities. It is sometimes said that she was one of its two "grandmothers"—the other one being Mary Switzer, who was in charge of vocational rehabilitation at the national level from 1950 to 1970.

<span class="mw-page-title-main">Airway pressure release ventilation</span> Pressure control mode of mechanical ventilation

Airway pressure release ventilation (APRV) is a pressure control mode of mechanical ventilation that utilizes an inverse ratio ventilation strategy. APRV is an applied continuous positive airway pressure (CPAP) that at a set timed interval releases the applied pressure. Depending on the ventilator manufacturer, it may be referred to as BiVent. This is just as appropriate to use, since the only difference is that the term APRV is copyrighted.

Modes of mechanical ventilation are one of the most important aspects of the usage of mechanical ventilation. The mode refers to the method of inspiratory support. In general, mode selection is based on clinician familiarity and institutional preferences, since there is a paucity of evidence indicating that the mode affects clinical outcome. The most frequently used forms of volume-limited mechanical ventilation are intermittent mandatory ventilation (IMV) and continuous mandatory ventilation (CMV). There have been substantial changes in the nomenclature of mechanical ventilation over the years, but more recently it has become standardized by many respirology and pulmonology groups. Writing a mode is most proper in all capital letters with a dash between the control variable and the strategy.

A negative pressure ventilator (NPV) is a type of mechanical ventilator that stimulates an ill person's breathing by periodically applying negative air pressure to their body to expand and contract the chest cavity.

<span class="mw-page-title-main">Bragg-Paul Pulsator</span> Medical ventilator

The Bragg-Paul Pulsator, also known as the Bragg-Paul respirator, was a non-invasive medical ventilator invented by William Henry Bragg and designed by Robert W. Paul in 1933 for patients unable to breathe for themselves due to illness.

Magdy Kherallah Younes is a Canadian physician and researcher specializing in respirology and sleep medicine. His major areas of focus include reflex control of breathing during exercise, sleep and mechanical ventilation; pathogenesis of respiratory failure; patient-ventilator interactions; hemodynamics of pulmonary circulation; pathogenesis of obstructive sleep apnea; and determination of novel biomarkers in the electroencephalogram (EEG). He is the inventor of several novel approaches to diagnosis and treatment, including Proportional Assist Ventilation (PAV), methods for non-invasive determination of passive respiratory mechanics during assisted ventilation, and Odds Ratio Product of sleep (ORP). These approaches have led to the development of several medical devices, including the Winnipeg Ventilator.

<span class="mw-page-title-main">Carl Gunnar Engström</span> Swedish physician and inventor

Carl Gunnar David Engström was a Swedish physician and innovator. He is the inventor of the first intermittent positive pressure mechanical ventilator that could deliver breaths of controllable volume and frequency and also deliver inhalation anesthetics.

References

  1. ↑ http://www.ventusers.org/ Homepage of International Ventilator Users Network
  2. ↑ IVUN homepage.
  3. ↑ http://www.post-polio.org/ PHI homepage.
  4. ↑ http://www.ventusers.org/edu/vabout1.html Archived 2014-05-03 at the Wayback Machine Information about Ventilator-Assisted Living.
  5. ↑ http://www.ventusers.org/vume/index.html Emergency Medical Care for Ventilator Users.
  6. ↑ http://www.ventusers.org/edu/index.html Home Ventilator Guide
  7. ↑ http://www.ventusers.org/edu/valnews/index.html ISSN 1066-534X
  8. ↑ http://www.ventusers.org/net/index.html Resource Directory for Ventilator-Assisted Living
  9. ↑ http://www.ventusers.org/res/index.html Research Awards
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