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Fun and Fast Vent User Starts Powerchair Football Club Sean Stamp, Auckland, New Zealand, [email protected] have Duchenne muscular dystrophy (DMD), which means that I lack a protein for building muscle called dystrophin. Because Iof this I had trouble walking because my muscles didn’t develop properly, and as I grew, it got harder and harder to walk. I started using a manual wheelchair at age 11, and since age 12, I’ve used an electric wheelchair. DMD is a progressive disability, and Sean with his mother. at 30 years old, I’ve gradually lost more of the use of my legs and arms but stay active as much as I can through sports. In 2009 I had some respiratory prob- lems and was put on a bilevel machine (ResMed VPAP™ III) overnight to control carbon dioxide because my breathing is very shallow. As time went by I had to start using it during the day too, because when I get tired, I have trouble breathing. It got to the point where I was only off the VPAP Sean and his friend, Jenny, play for two hours a day, which pretty powerchair football. much meant I was stuck in the house. I had a feeding tube put in, as I wasn’t breathing. A course of steroids also eating well, and this helped with my helped my chest muscles, and I was able to be off the VPAP up to about six hours a day. Powerchair Football A friend from Australia showed me A couple of years ago I saw a video of powerchair football and thought his ResMed Elisée™ 150, and I knew it looked like a lot of fun. I just had to have a go somehow. I decided to it was something that would change start a club in Auckland and applied for private funding for the equipment my life. I arranged a trial and straight needed to play. The funding came through in February 2012 and in July away it meant I could go out again we played our first game. and not have to worry about breath- ing as the Elisée was there waiting I had a great time as did the other players. The game is fun and very fast. when I needed it. I use CoughAssist I was worn out after the game so turned the Elisée on and had a rest. at night to keep my airways clear. continued, page 5 INFORMATION FROM INTERNATIONAL VENTILATOR USERS NETWORK (IVUN), SAINT LOUIS, MISSOURI, USA From Around the Network Judith R. Fischer, MSLS, IVUN Information Specialist, [email protected] Product News International Ventilator Users Network’s mission is to enhance the BiPAP A40 from Philips Respironics features AVAPS-AE, a new lives and independence of home ventilation mode that monitors upper airway resistance to automat- mechanical ventilator users and polio ically adjust the EPAP, no matter what changes in body position, survivors through education, advocacy, respiratory mechanics or sleep stages occur. The average volume research and networking. assured pressure support (AVAPS) mode adjusts the pressure support (up to 40 cm H2O) to maintain the target volume. It can Ventilator-Assisted Living be used both invasively and noninvasively. Small and lightweight (2.1 kg, 4.6 lbs), the BiPAP A40 also has a detachable external December 2012, Vol. 26, No. 6 battery that can provide power for up to five hours. Currently, ISSN 1066-534X the BiPAP A40 is only available outside the United States. www.healthcare.philips.com/main/homehealth/respiratory_care/ Inside this issue bipapa40/default.wpd SleepWeaver® Élan™ soft cloth nasal mask from Circadiance Vent User Starts Powerchair inflates like a balloon to create a seal – no leaks, pressure points, Football Club . 1 sore spots or red marks. Hose rotates easily due to double swivel From Around the Network . 2 connection. No obstruction to vision. Sizes are regular and large. www.circadiance.com/sleepweaver-elan.php Flying I: Ventilator Users’ Report and Manufacturers’ Role . 3 AMBU®, the company that developed the first self-inflating resusci- tator in 1956, is celebrating its 75th birthday. The “Ambu bag” IVUN Educational revolutionized emergency medical care. Many vent users rely on Conference Call . 6 Ambu bags to help them breathe during power outages, and for Meet Our Supporters . 10 breathing exercises that help expand the lungs. Resuscitation bags are a vital safety accessory for vent users. www.ambuusa.com Executive Director: Joan L. Headley, MS Humidification [email protected] “Humidification During Invasive and Noninvasive Mechanical Editor: Gayla Hoffman Ventilation: 2012” is the title of a Clinical Practice Guideline [email protected] recently released by the American Association for Respiratory Care (AARC). It can be downloaded from www.rcjournal.com/cpgs/pdf/ Designer: Sheryl R. Rudy 12.05.0782.pdf. Other guidelines from AARC are available: [email protected] www.rcjournal.com/cpgs/index.cfm. Special thanks ... Judith R. Fischer, MSLS Illinois Waiver Extended The Centers for Medicare and Medicaid Services (CMS) has 2012 Post-Polio Health International (PHI). granted Illinois a second 60-day extension of the Medically Fragile Permission to reprint must be obtained from Technology Dependent (MFTD) Waiver. This money-saving program Post-Polio Health International (PHI). provides home- and community-based services to prevent costly To be sure you receive email updates institutionalization and permanent hospitalization of children with from PHI and IVUN, set your spam catastrophic medical conditions and expenses. The extension filters to allow messages from allows the program to continue as is until January 30, 2013. [email protected] and [email protected]. For full details, go to http://savemftdwaiver.com. s 2 VENTILATOR-ASSISTED LIVING December 2012 Vol. 26, No. 6 www.ventusers.org Flying – Part I Ventilator Users’ Report and Manufacturers’ Role Joan L. Headley, Executive Director, International Ventilator Users Network, St. Louis, Missouri, [email protected] nternational Ventilator Users Network (IVUN) surveyed users of home mechanical ventilation (HMV) in late 2011. The survey was Itranslated into Spanish, French and Dutch. IVUN also surveyed the manufacturers of portable breathing devices and the airlines regarding their policies pertaining to flying while using a ventilator. A poster was presented at the 13th International Conference on Home Mechanical Ventilation – 4th European Respiratory Care Association Congress in Barcelona in March 2012. This is the first of a two-part series in The good news is that 72 percent which IVUN reports its conclusions of those who flew have never been and provides advice and links for users denied a flight because they wanted of HMV who choose to fly. Part II, to use their vent. “Role of the Airlines, Resources and The five who reported problems flew Reporting Travel Problems,” will be on five different airlines (American, published in the February 2013 issue Air Canada, KLM, Air France and of Ventilator-Assisted Living. Frontier) between the years of 2001- The Vent Users’ Survey 2010. Three were using an LTV Series, one a Breas 501 and one a PLV-100 Who: Thirty-two users of home in 2010. (The PLV-100 has never been mechanical ventilation completed certified for flight, a requirement IVUN’s “Flying While Using a Vent: that began in 2009.) Reasons given A Survey of Ventilator Users.” Seven- to deny the flights were battery not teen individuals live in the United allowed, ventilator too heavy, noisy, States (11 states), six in the Nether- so big that another seat needed to be lands, three each in Canada and purchased and every reason “in the France, two in Spain and one in the book.” One user reported that the United Kingdom. model of LTV “did not have an FAA Twenty-four hour use was reported certificate, so I couldn’t use it on by 40.6 percent; 59.4 percent use take-off and landing, but I did use it a ventilator only at night; and 34.4 during the flight.” percent use the ventilator for naps. More than half reported a positive Flying Needs: Eleven need a vent each experience using a vent in flight and time they fly, while 12 can breathe contributed the success (in decreasing on their own if the flight is less than order of mention) to preplanning, three hours. Only six reported using their flying companion or personal oxygen during flight, and they experi- attendant, physician input, airline enced no major problems. flight attendant, airline gate staff and the manufacturer certification letter. Almost half have never flown using Two attributed it to their own knowl- a vent, while only five flew in 2011. edge and positive attitude. Those who don’t fly state they have no need to, it is too much hassle Four of the 21 individuals who car- and it is expensive. If the hassle were ried their vent aboard but did not use eliminated, 75 percent said they it experienced problems. Most were would fly at least four times a year. continued, page 4 www.ventusers.org VENTILATOR-ASSISTED LIVING December 2012 Vol. 26, No. 6 3 FLYING – PART I: Ventilator Users Report and Manufacturers Role continued from page 3 due to airline personnel being unfa- of educating their staff about the miliar with the breathing device and various breathing machines that may “inspecting it by ‘twisting the dials.’ ” be carried on or used during flight. IVUN also asked those who do not Lastly, a few felt more emphasis use a vent during flight if they experi- should be put on proper handling enced any physical problems while of expensive wheelchairs that are flying. Nine reported none; eight just as important for many ventilator shortness of breath; two had a head- users’ independence.

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