Frequently Asked Questions

 
INDEX

How do I …?     Where can I find …?

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How do I …?

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.

Where can I find …?

Where can I find out information about the status of the old LIFECARE PLV-100 and its variations?
Connect here ...

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) 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 care for individuals living at home on a ventilator?
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)

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.

Where can I find information about using a trach? Longtime trach users Tony and Larry explained their experiences in a 2005 Ventilator-Assisted Living. Check out Care of a Tracheostomy (UNEDITED VERSION). Linda, a more recent user of trach positive pressure ventilation, wrote a comprehensive exploration of trach use and the issues related to living at home on a trach in “Exploring the Option of a Trach.”

Where can I find a facility (beyond the hospital) that will accept a person on a ventilator?
IVUN maintains Resource Directory for Ventilator-Assisted Living that features a section that lists Facilities with Long-Term Ventilator Units. Many of the facilities listed specialize in weaning individuals off of a ventilator or in preparing ventilator users to go back to their home.

Where can I find information to assist me in flying with my ventilator?
IVUN publishes experiential articles about flying with a ventilator. Check out the Travel Section of its Past Issues list on this site. Other resources include these governmental sites:

Where can I find the regulations for traveling with a disability post-September 11th?
The following website from the US Transportation Security Administration is for travelers www.tsa.gov/travelers. Click on "Travelers with Disabilities and Medical Conditions" to find specific regulations.

Where can I find coding information for portable ventilators and respiratory assist devices?
Puritan Bennett has two excellent documents on their website that explains coding, etc.
www.puritanbennett.com/remb/ventilators.aspx
www.puritanbennett.com/remb/sleep.aspx
The company site also has a Solvit Center that is very helpful.

Respironics also has an informative page "Helpful Hints for Filing Claims."

Where can I find examples of respiratory homecare programs?
There are many programs listed in the “Health Professionals” section of IVUN's Resource Directory for Ventilator-Assisted Living. Also, check the link below: (If we should add your program, let us know.)

British Columbia Provincial Respiratory Outreach Program

I would like to buy a pneumobelt. I understand that Respironics, Inc. manufactures them and sells them, but when I call customer service, I'm told they do not make them.
Respironics does indeed make the pneumobelt, but they refer to it as the exsufflation belt. They do not sell directly to the general public. Your physician must give you a prescription for the exsufflation belt, which you can then give to a durable medical equipment provider, such as your home health care agency. Here are the part numbers:

11010 – Exsufflation Belt, Large, with Bladder and Corset
11020 – Exsufflation Belt, Medium, with Bladder and Corset
11030 – Exsufflation Belt, Small, with Bladder and Corset