Frequently Asked Questions
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How do I connect with other ventilator users?
1. You can join an online chat group (See Resource Directory for Ventilator-Assisted Living.)
2. You can peruse and ask a question on Can You Help?
3. You can peruse and offer a suggestion on What Works for Me
How do I find someone who could make use of a ventilator(s) that we own, but can no longer use?
IVUN's Ventilatory Equipment Exchange is a location on IVUN’s site where individuals can “advertise” the availability of equipment. Please send the description of the equipment and how people can contact you to info@ventusers.org. IVUN will let you know when it is posted and asks that you let us know when it is no longer available.
How do I find out if my breathing and sleep problems are related to my prior polio? I have breathing problems due to a neuromuscular condition. What tests should I have done?
International Ventilator Users Network published “Breathing and Sleep Problems in Polio Survivors” and “Tests for Breathing Problems If You Have a Neuromuscular Condition.” The first article is a broad summary of the problems; the second article describes a routine evaluation of respiratory function and lists select medical articles for ALS, cough, Duchenne muscular dystrophy and the late effects of polio.
Videos from the Breathing & Sleep Symposium 2009 and Breathing & Sleep Symposium 2010 hosted by the Salk Institute for Biological Studies, La Jolla, California.
Where can I find out information about the status of the old LIFECARE PLV-100 and its variations, and the NEV-100?
Connect here for PLVs ... and here for NEVs.
Where can I find resources for people with COPD?
If you use a ventilator due to COPD and want to speak with a person, contact the COPD Information Line at 866-316-2673.Excellent sites include the COPD Foundation, COPD International, The ARDS Foundation (Acute Respiratory Distress Syndrome), Healthline COPD and the Acute Long Term Hospital Association (ALTHA).
Where can I find basic information about living with a ventilator at home?
IVUN’s 14-page booklet Information About Ventilator-Assisted Living is in a Q and A format and provides answers for individuals with a neuromuscular condition that may necessitate part time or fulltime use of a breathing device.
Where can I find information/statements from professionals about home/domiciliary care for individuals living at home on a ventilator?
- Home mechanical ventilation: A Canadian Thoracic Society clinical practice guideline was published in July/August 2011.
- Consensus Statement on Adult Domiciliary Non-Invasive Ventilation [PDF, 2112KB] was published in 2010 by the New South Wales (Australia) Department of Health, Respiratory Medicine, Respiratory Network Projects & Documents.
- S2 – Leitlinie "Nichtinvasive und invasive Beatmung als Therapie der chronischen respiratorischen Insuffizienz" was developed by the Deutschen Interdisziplinären Gesellschaft für Außerklinische Beatmung (2009).
- The American Thoracic Society published a “Statement on Home Care for Patients with Respiratory Disorders” in 2005 (Am J Respir Crit Care Med, Vol 171. pp 1443-1464)
- Mechanical ventilation beyond the intensive care unit: Report of a consensus conference of the American College of Chest Physicians was published in 1998 [Chest. May 113 (5 Suppl):289S-344S]
Where can I find health professionals who are expert in home mechanical ventilation?
IVUN maintains Resource Directory for Ventilator-Assisted Living that lists Health Professionals from all over the world. It also lists Facilities with Long-Term Ventilator Units, Ventilator Equipment and Aids, Manufacturers of Ventilator Equipment and Aids, and Organizations, Associations and Foundations.