IVUN

INTERNATIONAL VENTILATOR USERS NETWORK

 

an affiliate of Post-Polio Health International

CONNECTING

VENTILATOR USERS,

HEALTH PROFESSIONALS,

AND INDUSTRY

VENTILATOR-ASSISTED LIVING

VOLUME 29, NUMBER 2

APRIL 2015

JOAN L. HEADLEY, EXECUTIVE DIRECTOR, IVUN

Lyon, France, was the site of the 2nd Joint International Meeting of Journées Internationales de Ventilation à Domicile (JIVD) and European Respiratory Care Association (ERCA) held March 26-28, 2015. Attended by 1,752 people (exhibitors and staff included), the program, presented by 125 speakers and chairs, featured lectures, abstracts, posters and exhibits, including an exhibit of historic ventilators

 

The sessions in which ventilator users spoke were well attended. Topics included installing a ventilator on a wheelchair, heeding patient’s advice when selecting equipment, living independently and a discussion of the education needed for caregivers of home ventilator users.

 

JIVD secretariats Brigitte Hautier and Sylvaine Sazio report that those who did not attend may benefit from the many excellent presentations by accessing PDFs of the Power Point presentations online at www.jivd-france.com by the middle of May. .......MORE

JOEL VANDER MOLEN

At the age of three, I didn’t pay much attention to the world around, other than what I could play with. Everything changed though when my family was in a car accident one February morning. Now, as a C2/3 vent dependent quadriplegic, the world was a completely different place.

 

In 1985 it was unimaginable for a child with my injury to return home and live in mainstream society. My parents knew living in a care facility wasn’t in God’s plans for my life, so they did what the doctors never thought would work and brought me home.......MORE

Supported by:

Ventilator-Assisted Living

Vol. 29, No. 2, April 2015

Editor: Joan L. Headley

Designer: Brian Tiburzi

ISSN 1066-534X

© 2015 Post-Polio Health International.

Permission to reprint must be obtained from Post-Polio Health International (PHI) at info@post-polio.org.

Ventilator users, health professionals, non-profits, company representatives – send comments and updates to info@ventusers.org.

 

Notes from 14th International Conference on Home Mechanical Ventilation and the 5th European Respiratory Care Association Congress

JOAN L. HEADLEY, EXECUTIVE DIRECTOR, IVUN

Lyon, France, was the site of the 2nd Joint International Meeting of Journées Internationales de Ventilation à Domicile (JIVD) and European Respiratory Care Association (ERCA) held March 26-28, 2015. Attended by 1,752 people (exhibitors and staff included), the program, presented by 125 speakers and chairs, featured lectures, abstracts, posters and exhibits, including an exhibit of historic ventilators, a few of which can be seen below.

The sessions in which ventilator users spoke were well attended. Topics included installing a ventilator on a wheelchair, heeding patient’s advice when selecting equipment, living independently and a discussion of the education needed for caregivers of home ventilator users.

 

JIVD secretariats Brigitte Hautier and Sylvaine Sazio report that those who did not attend may benefit from the many excellent presentations by accessing PDFs of the Power Point presentations online at www.jivd-france.com by the middle of May. 

International Ventilator Users Network participated in a session “Home Mechanical Ventilation,” chaired by Dr. Patrick Leger, Lyon.  Dr. Nick Hill, Boston, presented a global overview of home mechanical ventilation (HMV). A map of the world locating the availability of HMV makes it clear that most of the world does not have access to it. Hill also pointed out the lack of accurate data in countries where HMV is used. 

 

Dr. Joan Escarrabill, Barcelona, discussed the outcomes and variability according to country. In presenting data from studies and surveys, Escarrabill challenged the idea of asking patients, i.e., ventilator users, their opinions unless there is intent to act on the ideas presented.

 

Joan L. Headley presented “History and evolution of IVUN” pointing out the current activities of the network. (See Resource Directory for Ventilator-Assisted Living and Home Ventilator Guide, Ventilator-Assisted Living.)

 

Headley presented charts of data from a survey distributed through the Network prior to the meeting. An IVUN Advisory Committee composed of HMV users established a list of their major concerns. The ten concerns were then prioritized by both health professionals and ventilator users. The first chart depicts the results from 44 ventilator users. The second chart shows the rankings of 119 health professionals.  

Interestingly, the top five concerns are identical. The majority of respondents were from the United States, and the survey confirms what phone calls to IVUN suggest. Both individuals with breathing problems due to neuromuscular disease and physicians who treat them are concerned about the adequate availability of physicians with expertise in HMV.

 

The need for end-of-life discussions with ventilator users was mentioned by health professionals at several of the sessions.

 

However, our groups ranked end-of-life issues 9 or 10 of 10. I was surprised, but one ventilator user was not stating, “Ventilator users don’t want to talk about it anymore than the general population.”

 

The other low ranking concern was healthy aging with a disability. Why? One ventilator user suspects that most would never consider someone with a disability as “healthy.”

Dr. Hill and ventilator user Mickie McGraw both observed that the top 8 concerns are concrete and immediate issues and that end-of-life and healthy aging issues are concerns of the future.

What do you think these charts reveal?  Are there any surprises? Incongruencies? Send your thoughts to info@ventusers.org.

Of the 44 ventilator users who responded, 28 individuals use noninvasive ventilation and 16 individuals use invasive. IVUN compared their responses. (See below). Red represents invasive ventilation, and blue represents noninvasive. The chart displays the concerns in order of the most agreement between the two groups from top to bottom. Both groups were most in agreement about a concern for suppliers of equipment and accessories.

It is notable that noninvasive ventilation users were more concerned about access to a knowledgeable physician than invasive ventilation users.

 

We missed one. More than 50% of the participants told us that we missed a major concern of theirs: access to and the caliber of the training of caregivers, family members, nurses and emergency room personnel.

 

Ventilator users and health professionals prioritized their concerns. IVUN’s modus operandi is networking. Do you run a program that helps address these concerns? Tell us about it. As a ventilator user, do you want to hear more from other vent users on a specific topic? Which one? Do you have something you want to say?  Send your comments to us. As a health professional involved daily in these issues, do you have something to say? We welcome your comments, too. It is not enough to just express concern.  

 

From Camper to Counselor at CHAMP Camp

JOEL VANDER MOLEN

At the age of three, I didn’t pay much attention to the world around, other than what I could play with. Everything changed though when my family was in a car accident one February morning. Now, as a C2/3 vent dependent quadriplegic, the world was a completely different place.

 

In 1985 it was unimaginable for a child with my injury to return home and live in mainstream society. My parents knew living in a care facility wasn’t in God’s plans for my life, so they did what the doctors never thought would work and brought me home.

 

Getting used to having a nurse with me 24 hours a day and using a mouth stick to play didn’t take me very long. When I started preschool about a year later, I was ready to learn just like my classmates.

 

School continued just like every other boy, only with a few unique tools. In first grade, a substitute teacher had us rolling dice as part of the lesson. She quietly came to me and said she was sorry that I couldn’t participate. I quickly corrected her by showing that by pushing down on one end of the die, it rolled very well if my assistant caught it.

 

One area in school I didn’t like was physical education (PE). When my classmates ran around the gym, I could easily follow by driving my power chair with them. With other activities though, like baseball, basketball, I had to sit on the sidelines. I was made a referee or base manager, but not directly involved with the rest of the class.

 

In the summer of 1993 my parents, a caregiver, and I took a long drive from our home in Iowa clear out to Ohio to attend CHAMP Camp. This was a camp for kids just like me; everyone had either a vent or something they used at night to help them breathe. Some were ambulatory, while others used a wheelchair to get around. I had been to a similar camp a few years earlier in Miami, Florida, but this one was different. One big part was that after my parents dropped me off, they were gone for the week!

 

Two other campers were quadriplegics and we became friends within minutes of arrival. One of them though, didn’t live at home; he lived in a hospital in Indianapolis, Indianapolis. The people that started the camp, Dave Carter and Nancy McCurdy, worked at the hospital and thought kids like us should have a camp just like every other child.

 

A great part about CHAMP Camp is that everyone participates in every activity. I had time to watch my friends, but when my turn came I did the activity! I got to go fishing with a pole I could operate with my chin, swimming in the pool by laying on a floating mattress, riding a horse and a lot more.

 

The best part was the last night we were there.

 

All week, pranks had been going back and forth between the boy’s and girl’s cabins. My friends and I helped to instigate a few them, with willing counselors to help in our schemes. On the last night, after closing ceremonies, was a squirt gun fight between the two cabins. I had more fun in a few short minutes than all the things I had ever done outside of camp. I was hooked from that time on.

 

Camp was held at Recreation Unlimited and the following years saw more activities added to the grounds. I couldn’t wait to go back and see my friends and have a week of fun. New activities included climbing a 25 foot tree and later on a 50 foot tower. A ventilator with 40-70 feet of tubes was stationed on the ground and kids on vents were hoisted up by a system of pulleys in a special seat. A counselor went along with me, an ambu bag, and camera, and up I went. It was great seeing the bird’s eye view of everything around.

In 2000 I graduated from high school and no longer qualified to attend CHAMP Camp as a camper. I still greatly enjoyed seeing all my friends and working with the younger kids, so I came back that year as a counselor.

 

When I was a camper, I did not have to bring my own caregivers, the counselors took over that job. As a counselor, I had to be independent in my own care, so that meant taking two to three of my caregivers from home along.

Seeing all the prep work before camper arrival was something I hadn’t experienced. We first started with all the counselors learning about every kid that was coming. Each individual cabin then took more time going over our children’s needs in detail, meds, daily routine, fears, and everything else. With the majority of the staff being nurses, RT’s, nursing students, and other medical professionals, the camper’s cares were well covered. After two days of training and working with each other, we were ready for the kids.

 

Part way through the week one of the campers received a letter from home. As soon as he saw it, he ran up to me so I could read it for him. We got it arranged that he held it so we both could see and all was good. Later in the day he and a friend came up to tell me a joke they just learned. It was one I had told for years, but I still listened to both parts and made sure to laugh at the end.

 

Except for a few friends at home, kids hadn’t ever come to me for help with anything. This helped to confirm that I wanted to continue to come to CHAMP Camp and work as a counselor.

 

I missed two years for college, but from 2003 through 2011 I was able to come every year and work with kids. In 2011, CHAMP Camp moved to Bradford Woods near their home office in Indianapolis. I loved the drive being shortened by several hours and no longer needing to stay overnight on the trip.

 

At Bradford Woods, we have smaller cabins and can work with the campers more closely than in Ohio. The grounds are again well suited for wheelchairs and with a larger lake, we can do more water activities and we now spend an entire day at the lake. In 2014, a new activity of a zip line was added to the list the campers get to experience.

 

Due to health and funding issues, I have had to miss a few years of working at camp. However, I keep in regular contact with my friends through Facebook and other means. A few of my friends from back in 1993 have gone on to their heavenly home, but others, like me, have been able to go into the working world and give back to camp.

 

Along with my parents, CHAMP Camp has played a major role in helping me become who I am today. Learning independence from my parents helped me through the years I lived on my own in college. Working with kids helped me to do disability awareness talks at local grade schools. Technology changes throughout the years have enabled us to do more than we could imagine when I started.

 

Kids that were formerly unable to communicate verbally now use various speaking systems that allow them to chat with their new friends. I now use a Diaphragmatic Pacing System (DPS) instead of a traditional ventilator.

 

If you have a child age six to high school graduation who uses mechanical breathing, I highly recommend CHAMP Camp. It is a unique experience that is a great opportunity for those involved. For one week out of the year, we get to leave the real world behind and just be a regular person. It’s something I hope to continue to do and see kids enjoy for many years to come. 

 Camps for Ventilator-Assisted Children                                                                                   

CHAMP CAMP

CHAMP Camp is scheduled for June 21-25, 2015 at Bradford Woods in Martinsville, Indiana. 

www.champcamp.org 

FRESH AIR CAMP

Fresh Air Camp is scheduled for June 14-19, 2015. It typically starts annually the 2nd Sunday in June at Camp Cheerful, Strongsville, Ohio.

www.freshaircamp.org

CAMP INSPIRATION

Camp Inspiration is specifically for bipap and ventilator-assisted children at Double H Ranch, Lake Luzerne, New York. It is held annually at the beginning of June.

www.doublehranch.org/camp-inspiration

PA VENT CAMP

PA Vent Camp is held annually at Camp Victory in Millville, PA.  June 28 - July 2 are this year’s dates.

http://campvictory.org/gallery/pa-vent-camp  

VACC CAMP

2016 will be VACC Camp's 30th Anniversary. The camp always takes place during the spring break of the Miami public schools (March - April).

www.vacccamp.com

TRAIL'S EDGE CAMP

 

Trail’s Edge Camp is a week long summer camp for children who are ventilator-assisted. Camp is held during the first full week in June at the Fowler Center for Outdoor Learning, a beautiful barrier-free camp on 200 acres in Mayville, Michigan.

www.trailsedgecamp.org

 

 

LIGHT THE WAY VENT CAMP

 

Vent Kids of Alabama's Light the Way Vent Camp is held annually at Children’s Harbor  in Alexander City, Alabama. Tuesday, May 26 to Sunday, May 31 are the dates for 2015.

facebook page

 

 

CAMP PELICAN

 

Camp Pelican, the New Orleans area, hosts a week-long overnight resident camp for children with pulmonary disorders-such as but not limited to severe asthma, cystic fibrosis, tracheotomy and ventilator assisted children.  May 31-June 6 are the dates for 2015. 

http://camppelican.org

Networking

 

Proposals Wanted! 

International Ventilator Users Network announces a “Request for Proposals” for neuromuscular respiratory disease research.

 

Deadline is October 1, 2015 (to be awarded in 2016).

 

Questions? Call 314-534-0475 or email director@post-polio.org.

 

Accessories Available 

The following accessories (all in unopened packaging) are available for free as is.

 

  • 1 dozen AirLife Ventilator Circuit Ref 003762 (CareFusion)

  • ½ dozen PLV Ventilator Circuit Ref 1002358 (Respironics)

  • 5 22 mm angled mouthpiece Ref FC06566 (Respironics)

  • 6 6” trachea flextube with 15mm taper Ref 1004968 (Respironics)

  • 4 22mm 5 ½ standard flextube Ref 1006042 (Respironics)

  • 55 AirLife Nonconductive Respiratory Therapy Filter Ref 001851 (CareFusion)

 

Contact info@ventusers.org if you would like any of these items.

 

Report on Ice Bucket Challenge Funds 

According to the ALS Association, people all over the world donated more than $220 million to ALS charities, with an incredible $115 million contributed during the Ice Bucket Challenge. The association has created an infographic describing the future plans of the association as a result of the influx of funds.

La Polio, Le Frog, et Moi by Hélène Joguet 

Atteinte d’une forme grave de polio á l’age de 8 nas, j’ai perdu toute autonomie respiratoire á une époque où les respirateurs, auxquels je suis branchée 24h/24 étaient d’énormes machines qui interdisaient toute sortie de l’hôpital.

 

L’ évènement essentiel de mon existence fut l’apprentissage du FGOG qui m’apporta liberté et espoir.

 

Si vous désirez une copie imprimée, contactez IVUN. Disponible en français seulement.

 

Educational Opportunities

Focus Spring Conference in Florida 

The May 7-9, 2015 Focus Spring Conference will be held at the Coronado Springs Resort and Convention Center in Orlando, Florida.  Review the extensive program and availability of CEUs.  Find out more details or register here.

 

Parent Project Muscular Dystrophy Conference 

Parent Project Muscular Dystrophy’s Annual Connect Conference, June 18 - 21, 2015, Washington Marriott Wardman Park, Washington, DC. Join this unique convergence of industry partners, scientific leaders, medical providers, people living with Duchenne, and their families. Learn more and register.

 

CHEST Course 

Mechanical Ventilation: Advanced Critical Care Management, July 30 - August 01, 2015, Innovation, Simulation, and Training Center, ACCP, Glenview, Illinois, USA.

AARC Call for Abstracts 

The American Association for Respiratory Care invites you to submit your original study or case report for it's Open Forum, November 7–10, 2015, Tampa, Florida. Abstract submission deadline is May 1, 2015. Click to submit your abstract.

 

Recent Relevant Publications

Aspiration-Related Pulmonary Syndromes 

Chest, 2015; 147(3):815-823. doi:10.1378/chest.14-1049

Xiaowen Hu, MD; Joyce S. Lee, MD; Paolo T. Pianosi, MD, FCCP; Jay H. Ryu, MD, FCCP

Link to article.

 

Head Butting About Wiping Bottoms 

Disability Rights Education and Defense Fund (DREDF)

Denise Sherer Jacobson

Link to article.

 

How EMS use of ventilators has evolved 

EMS1.com

Shawna Whooley

Link to article.

 

Mobile Cart Frees up Patients With Ventilators 

Hospitals & Health Networks

Laura Putre

Link to article.

 

Muscular Dystrophy robot-building twins enable themselves through 3D printing technology 

ABC News Australia

Clare Rawlinson

Link to article.

 

The danger of assisted-suicide laws 

CNN

Marilyn Golden, Disability Rights Education and Defense Fund

Link to article.

 

Advocacy

Advocating for People with Paralysis in the US 

The Christopher and Dana Reeve Foundation (CDRF) follows issues related to people with paralysis and has an excellent website that explains the current issues and provides a mechanism on how to contact the correct people.

Recently, the Action Network of the CDRF sent alerts about Protecting Access to Complex Rehabilitation Technology (CRT) and concerns about the outpatient therapy caps under Medicare that will be enforced December 31st. 

 

They and IVUN follow the consequences for ventilator users as a result of the Medicare DMEPOS Competitive Bidding Program. IVUN writes and signs specific letters to Centers for Medicare and Medicaid Services (CMS) advocating for policies and payments that provide appropriate equipment for users of home mechanical ventilation.
 

Sign up for a free Advocacy e-newsletter from the Action Network of the Christopher and Dana Reeve Foundation.

 

Industry

Masks: One size fits all 

Weinmann Medical is selling in Europe only two new masks that are one size fits all.

 

JOYCEone is the nasal mask option (with integrated exhalation system). 

 

How does “one size fit all” work? The upper part of the mask cushion is very flexible and deep.  Position the lower part of the mask between nose and upper lip and then position the upper part of the mask over the nose. If the nose is bigger, the mask slides down the nose fitting itself.

 

JOYCEone Full Face utilizes the same principle. The lower part of the mask is even more flexible and, for a very small face, the mask cushion can fit on the chin or even under the chin.  See comparison with JOYCEeasy Full Face in profile below. 

JOYCEone Full Face (l) and JOYCEeasy Full Face (r)

Maquet Medical Systems will distribute Flight 60 

Maquet Medical Systems USA announced in March that it has signed an exclusive distribution agreement with Flight Medical to distribute Flight Medical's flagship product, the Flight 60 mechanical ventilator. Starting in the first quarter of 2015, Flight Medical products will be sold in the United States by Maquet's sales representatives along with a select number of legacy Flight Medical distributors. 

 

The Flight 60 meets the demands of patients across the continuum of care, including those requiring acute care, extended care, long or short term transport and homecare therapy.

 

Breathe Technologies Receives CE Mark 

In September 2014, Breathe Technologies, Irvine, California, a developer and manufacturer of innovative medical technologies for patients with respiratory insufficiency diseases and neuromuscular diseases, has gained CE Mark approval for its Non-Invasive Open Ventilation (NIOV). The CE marking states that the product is assessed before being placed on the market and meets EU safety, health and environmental protection requirements.

 

The system is the first and only wearable, ventilation system for people with respiratory insufficiency to receive a CE Mark. It provides augmented tidal volume, which reduces the work of breathing for people with respiratory insufficiency caused by chronic obstructive pulmonary disease (COPD), including Alpha-1 Antitrypsin Deficiency.

 

Becton Dickinson (BD) Completes Acquisition of CareFusion 

On March 17, 2015, BD completed its acquisition of CareFusion. The combined company – the new BD – is comprised of more than 45,000 associates in 50 countries. The CareFusion contribution to the homecare ventilator market is the LTV Series. Read a letter to customers regarding the merger.  

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IVUN

4207 Lindell Blvd #110

Saint Louis,MO 63108-2930

314-534-0475

info@ventusers.org