IVUN
INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
CONNECTING
VENTILATOR USERS,
HEALTH PROFESSIONALS,
AND INDUSTRY
VENTILATOR-ASSISTED LIVING
This issue sponsored by:
VOLUME 31, NUMBER 2
APRIL 2017
IVUN: You are a user of noninvasive home mechanical ventilation. When did you start its use and why do you need breathing assistance?
I started using “Bi-PAP” at night only when I had respiratory failure due to the progression of my neuromuscular disability, spinal muscular atrophy. This happened when I was about 18 or 19 years old........MORE
Audrey King, Self-Manager, Ontario’s Direct Funding Program, Toronto, Canada
Robots are replacing attendants in Japan. This is the way of the future, according to ongoing research and many articles in prominent publications, such as the New York Times.
ADDITIONAL SECTIONS
Advocacy
Educate, discuss, take action.
Networking
Sharing the work of others.
Recent Relevant Publications
Summaries, links to selected professional, disability, disease journals and newsletters.
Educational Opportunities
Conferences and webinars for health professionals and ventilator users.
Industry
The business of living with a ventilator.
Supported by:
Ventilator-Assisted Living
Vol. 31, No. 2, April 2017
Editor: Joan L. Headley
Designer: Brian Tiburzi
ISSN 1066-534X
© 2017 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.
Meet Alice Wong, Founder and Project Coordinator,
Disability Visibility Project™
IVUN: You are a user of noninvasive home mechanical ventilation. When did you start its use and why do you need breathing assistance?
I started using “Bi-PAP” at night only when I had respiratory failure due to the progression of my neuromuscular disability, spinal muscular atrophy. This happened when I was about 18 or 19 years old.
Over the years, I was fine without any ventilatory support during the day. As my diaphragm muscles became weaker over time, I started using the device for short periods during the day when I was in my late 30s. It really helped with my energy and eating.
I'm now in my early 40s and pretty much use it all day and night except for when I eat and drink. I can function without it for an hour or two but it would leave me exhausted. I noticed that I eat and drink more when I can use my “Bi-PAP” afterwards so that my full stomach doesn't make me feel so out of breath.
I have a Trilogy (Philips Respironics) and use a Swift Nano nasal mask (ResMed) during the day. I hang the vent on the back of my wheelchair. I use this mask because it's the lowest-profile and has a pretty good seal.
A Philips Respironics BiPAP S/T is next to my bed. It's a lot easier to have two devices, so I don't need my attendants and caregivers moving things to-and-fro every day. At night, I use a ResMed Mirage Activa. For some reason it gives me less leaks when I'm lying down.
Noninvasive ventilation is a big and important part of my life allowing me to do all that I need to do!
IVUN: What is it that you do?
I moderate a Facebook group for the Disability Visibility Project™, a project that I created in 2014. I have over 11,000 members in that group and the conversations about disability there are very lively.
The Disability Visibility Project™ is a community partnership with StoryCorps, a national oral history organization, and an online community dedicated to creating, sharing, and amplifying disability stories and culture. If anyone wants to join our group, they're welcome.
I organize these activities pretty much all by myself. If anyone would like to support the Disability Visibility Project™, they can check out the crowdfunding page: www.patreon.com/DVP.
IVUN: You are very active on Twitter in educating and advocating for disability rights. Was there a defining moment that propelled you?
I love Twitter! I use it for activism and fun - it's an amazing way to connect with disabled people and learn from different perspectives from around the world. I also made a lot of professional connections that way.
In the fall of 2016, some of my disabled friends and I noticed there wasn't much discussion about disability during the US presidential election campaign. My friend Gregg Beratan asked Andrew Pulrang and me to form a social media campaign where we could host chats about disability policies and issues.
We called it #CripTheVote and it really took off. There is a real hunger for people to come together and share their lives. We originally thought it would end after the election but clearly there is a need to continue this activism, and we decided to expand our mission to promoting the political participation of people with disabilities.
Anyone can check out our upcoming chats here.
It's a great way to share information and tell stories in short bites. I can be found at @SFdirewolf and @DisVisibility.
IVUN: What are the most pressing issues facing ventilator users in the US today?
The biggest scare was the proposed Republican healthcare bill, the American Health Care Act. It would have dismantled Medicaid as we know it switching to block grants or per capita caps for each state. Although the Federal government establishes certain parameters for all states to follow, each state administers their Medicaid program differently, resulting in variations in Medicaid coverage across the country.
For many ventilator users, Medicaid is our main source for home and community-based services. With major cuts to Medicaid, people with disabilities may be forced to return to nursing homes just to live which is inhumane and a return to segregation.
Alice Wong resides in San Francisco, California.
Twitter used by pulmonary health professionals
"Building Community Through a #pulmcc Twitter Chat to Advocate for Pulmonary, Critical Care, and Sleep" by Christopher L. Carroll, MD, MS; Kristi Bruno, MA; Pradeep Ramachandran, MBBS, published in CHEST, March 2017 reports the use of Twitter as a powerful tool for the widespread engagement of a medical audience.
Good Attendants: What I Have Learned
Audrey King, Self-Manager, Ontario’s Direct Funding Program, Toronto, Canada
Robots are replacing attendants in Japan. This is the way of the future, according to ongoing research and many articles in prominent publications, such as the New York Times.
It might be cheaper, but is it a good idea?
On difficult days, the fantasy seems great.
When you become a “Self-Manager” you get plenty of information about employment standards and business practices. Written information, or even advice, about personal employer-employee relationships is much harder to come by.
“… just give me an attendant who won’t get bored, or tired, or frustrated, or impatient or want more money… “
Why is this?
Human nature. Every person has a unique personality with variable behaviors and expectations about each other. Sometimes you and your attendant mesh and get along well. Sometimes you don’t. How you relate to each other can vary from day to day depending on mood and circumstance. Typically, it’s up to you and your attendant to work it out - or not.
I have been a self-manager since Ontario’s Direct Funding Pilot Program began in 1994. My first attendant stayed until she retired - 18 years in total. Another is still with me after 16 years. I’ve hired difficult-to-deal-with disasters as well as “saints” who’ve solidly supported me through crises situations.
I’ve learned many a lesson along the way, which might be helpful to others hiring, training or firing their own attendant staff.
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The standard three-month probationary period may not be enough to really know a person, particularly if they only work for you an hour or so a week.
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Be clear about pay expectations, pay schedule and benefits. Start with a job contract and review it with your attendant(s) periodically and at least once a year.
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When you hire someone, be very clear about your requirements, job expectations and the role the attendant must play. Some examples might be to state that you are NOT looking for a companion or you do NOT provide their meals or snacks. Never “pay-it- forward” by giving hours you expect the attendant to work later.
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Keep in mind the fact that dependence on another person, sometimes for intimate tasks, can evoke employee assumptions about helplessness and lead to issues related to dominance, respect and power. Vulnerability can get you into situations that may be difficult to reverse.
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Many years with an attendant who meets your needs well and with whom you share interests in common often results in friendship. Spending social and entertainment time with such a person, or providing favors (such as letting them hang out in a spare bedroom until their next job) can lead to role and compensation confusions. You need to be very clear about roles and pay situations - which of course - can inevitably compromise friendship.
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Different attendants have different skills and interests (e.g. cooking, mending, organizing, fixing things). Take advantage of this and assign jobs accordingly.
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If you want longevity in employment, consider how you might provide greater job satisfaction. For example, if you do not physically manage the kitchen or meals, and have the same attendant for these tasks every day, let that worker organize the dishes, fridge or cupboards according to how they like to work. Perhaps, you could provide the cleaning products the employee prefers to work with.
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Show appreciation. Acknowledge jobs well done, as well as a birthday, or when out shopping with your attendant, coffee and a muffin - even lunch.
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Decide how “flexible” and tolerant you can be. You might have an attendant who is always ten minutes late but does everything you ask. Or, an attendant with a high pitched shrill voice, yet goes the extra mile. How much can you adjust to what annoys you?
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Consider investing a little time in your attendant’s future. Helping fill out government forms, correcting grammar or a giving a leg up to other careers are just a few examples.
As for replacing human attendants with robots, I vote to keep them in factories making car parts or turning cans of paint on a programmed basis.
Persons with disabilities are not “work objects.” Attendants are not robots or slaves. The ups and downs of human interaction is life. And, robots can be expensive, cantankerous and subject to breakdown, too.
Ontario’s Direct Funding Program* enables direct employer/employee accountability and a relationship and responsibility between worker and self-manager that facilitates quality lives that wouldn't be possible with robots or services delivered by an agency.
“Human nature” does make every attendant/consumer relationship unique. The freedom of choice and control of Direct Funding enables opportunities for learning, growing and indeed resolving the interpersonal challenges that sometimes arise.
*For the third time in as many years, the province has increased its investment in the Direct Funding Program, to allow more Ontarians with disabilities to live independently in their homes. The latest expansion expects to fund approximately 1,000 individuals by 2018 to manage their own care based on their individual needs.
Advocacy
ADVOCACY WORKS!
In the last issue of Ventilator-Assisted Living (Volume 31, Number 1), several readers commented on the article “Ventilator users respond to question about backup generators,” which was published in the previous issue.
Readers might like to know the outcome of my advocacy action following a massive power failure in Toronto, Canada, over Christmas in 2013.
The details of those horrendous four days were published by IVUN - Highly Dependent on Power (2014, Volume 28, Number 1).
After being trapped in my third-floor condominium without heat and power for four days, I knew I had to do something. I started at the top.
I wrote letters to my local City Councilor and Ontario’s Premier, asking that appropriate emergency plans and resources be established for electrically “life supported” individuals living in the community. I pointed out that changing weather patterns due to global warming and Ontario’s aging hydroelectric infrastructure was a guarantee that such crisis situations are likely to occur again, and with increasing frequency.
I spoke with Toronto’s Emergency Planning Department and I told my story, “I Was Trapped in My Apartment,” to Toronto Life magazine (February, 2014).
I was on the agenda and spoke about the issue at a Toronto City public meeting.
Working locally, I urged our condominium board to install a generator. They responded positively and immediately began to research costs, options and procedures. Information was presented to the condominium owners and a vote was taken at a special meeting. Although the majority of owners were keen to have a generator installed, the 2/3 majority required by Ontario’s Condominium Act was not reached. The defeat was only five votes. However, the Board had no other avenues to pursue.
Determined and with the Board’s blessing, I engaged a lawyer who specializes in Human Rights. After several months, the legal world ruled that the Ontario Human Rights Act transcended the authority of the Condominium Act. The board and the majority of owners were delighted.
Our generator was installed in November 2016. It’s already proved its worth during several short power outages.
Audrey King, Toronto, Canada
Networking
IVUN updated its Home Ventilator Guide
The Home Ventilator Guide is accessible from the home page or by clicking the image. We would like to thank the representatives from the manufacturers who responded to our request to review the chart. We request that all companies review their information and contact us with changes.
Here is a recap of the devices that are no longer manufactured and the dates in the future when service will be discontinued. Devices whose dates when service stopped is in the past are not listed here.
Medtronic (Covidien, Newport, Puritan Bennett)
The HT70 ventilator is currently manufactured and supported.
The HT50 ventilator is no longer manufactured and will be supported until 2021.
Breas Medical AB (B & D Electromedical)
PV 403 PEEP is no longer available for sale, but will continue to be service supported until February 2019, if possible. Only spare parts are sold.
Porta-Lung
The Porta-lung is still being manufactured to serve the existing Porta-Lung users.
ResMed
The following have been discontinued.
VPAP ST-A with IVAPS (S9), VPAP III ST (S7), VPAP IV ST
VPAP III ST-A with QuickNAV (S7) (never available in US)
IVUN also updated the Resource Directory for Ventilator-Assisted Living. Additions, deletions and changes should be sent to info@ventusers.org.
ABLE
Blogger Chris Rodriguez from the National Disability Institute (NDI) offers information, ABLE Programs Update, about ABLE accounts and which states offer ABLE programs.
New Book: Just Breathe Out
Just Breathe Out: Using Your Breath to Create a New Healthier You by Betsy Thomason, BA, RRT, is a step-by-step and a how-to book with clear explanations as to why we should rethink how we breathe.
BreatheOutDynamic system (BOD) focuses on breathing out, a method designed by Australian born Olympic cycling coach Ian Jackson (1943-2011). It also includes informative illustrations by Alice Smith.
The book is not intended to replace medical care (or your ventilator) but is an interesting discussion of the ancient wisdom of the outbreath.
Recent Relevant Publications
From Chest
“…the compounding effects of respiratory muscle weakness and disease-specific features that promote upper airway collapse or cause dilated cardiomyopathy, contribute to various sleep-disordered breathing events.”
Sleep-Disordered Breathing in Neuromuscular Disease: Diagnostic and Therapeutic Challenges, Loutfi S. Aboussouan, Eduardo Mireles-Cabodevila. Chest. Published online March 31, 2017.
“Our results suggest that the early use of intravenous vitamin C, together with corticosteroids and thiamine may prove to be effective in preventing progressive organ dysfunction including acute kidney injury and reducing the mortality of patients with severe sepsis and septic shock.”
Original Research: Hydrocortisone, Vitamin C and Thiamine for the Treatment of Severe Sepsis and Septic Shock: A Retrospective Before-After Study, Paul E. Marik, MD, FCCM, FCCP, Vikramjit Khangoora, MD, Racquel Rivera, Pharm D, Michael H. Hooper, MD, MSc, John Catravas, PhD, FAHA, FCCP. In press, accepted manuscript, Chest.
Video on ASV from European Medical Journal
“ASV has proved a complex therapy, sometimes proving fatal if used incorrectly. Its efficacy is dependent on a number of factors; the panel discusses the implications of results from the SERVE-HF trial and how ASV should be used in clinical practice.”
A video from EMJ Respiratory (European Medical Journal), Adaptive Servo Ventilation - What's next? by Anita K. Simonds.
From Thorax
“Obesity hypoventilation syndrome (OHS) is the most common indication for home ventilation, although the optimal therapy remains unclear, particularly for severe disease. We compared Bi-level and continuous positive airways pressure for treatment of severe OHS.”
A randomised controlled trial of CPAP versus non-invasive ventilation for initial treatment of obesity hypoventilation syndrome, Mark E Howard, Amanda J Piper, Bronwyn Stevens, Anne E Holland, Brendon J Yee, Eli Dabscheck, Duncan Mortimer, Angela T Burge, Daniel Flunt, Catherine Buchan, Linda Rautela, Nicole Sheers, David Hillman, David J Berlowitz. Thorax, published online November 15, 2016.
From Lucile Packard Foundation for Children's Health
“‘Time’ - for visits, for administration, for care coordination - emerged as one of the key barriers to providing quality care. Reimbursement rates for primary care pediatricians were also noted as an issue, along with the need for funds for care coordination, as well as the gap between primary care pediatricians and specialists.”
Challenges and Joys: Pediatricians Reflect on Caring for Children with Special Health Care Needs, Kris Calvin, Megumi Okumura, MD, and Heather Knauer. Issue Brief from Lucile Packard Foundation for Children's Health, March 30, 2017.
From the Journal of Critical Care
“The results reinforce the association of the oral microbiome as a reservoir of respiratory pathogens that can translocate to the lower airways and ETT (endotracheal tube) biofilms.”
Community analysis of dental plaque and endotracheal tube biofilms from mechanically ventilated patients, Poala J. Marino, Matt P. Wise, Ann Smith, Julian R. Marchesi, Marcello P. Riggio, Michael A.O. Lewis, David W. Williams. Journal of Critical Care. June 2017, Volume 39, Pages 149–155.
New Report on Improving Care at the End of Life
“Five Big Ideas to Improve Care at the End of Life.
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Build the development and updating of an advance care plan into the fabric of life.
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Redefine Medicare coverage in a way that meets the complex needs of people with serious illnesses.
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Develop a set of quality metrics related to end-of-life care that can be used for accountability, transparency, improvement, and payment.
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Increase the number and types of health professionals who can meet the growing needs of an aging population.
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Support model communities embracing fundamental change in the design and delivery of care for people with advanced illness.”
New report calls for significant overhauls in current American "end-of-life" care.
How are Youth in the US in Special Education Faring?
A new multivolume report provides a national picture of secondary school students in special education and examines how they compare with their peers. The students account for 12 percent of all youth in the United States.
Mathematica Policy Research Senior Researcher Stephen Lipscomb led the analysis for two reports.
Educational Opportunities
FOCUS Spring 2017
May 5 - 6, 2017, Friday, Saturday, with additional optional workshops on May 7th, Sunday morning, Rosen Shingle Creek Resort in Orlando, Florida. Watch for details.
American Thoracic Society (ATS) 2017 International Conference
May 19-24, 2017, Walter E. Washington Convention Center, Washington, DC. Learn more.
Parent Project Muscular Dystrophy 2017 Annual Connect Conference
June 29 to July 2, 2017, Chicago, Illinois. Save the date.
European Respiratory Society (ERS) International Congress 2017
September 9-13, 2017, Milan, Italy. Registration will open in April 2017 from this website.
FOCUS Fall 2017
September 28, 2017, Doubletree Hilton Hotel, Monroeville, Pennsylvania. Watch for details.
October 18, 2017, Poughkeepsie Grand Hotel in Poughkeepsie, New York. Watch for details.
CHEST 2017
October 28- November 1, 2017, Toronto, Canada. CHEST annual meeting offers more than 400 general sessions, postgraduate courses, simulation education sessions, original investigation presentations, CME/CE credits and MOC points for hundreds of sessions and more.
Registration is now open.
JIVD/ERCA Conference in 2018
First announcement: JIVD (Journes Internationales de Ventilation Domicile) and ERCA (European Respiratory Care Association) are working on the organization of their third joint meeting that will take place in Lyon, France, March 15 - 17, 2018.
FOCUS Spring 2018
May 4, 2018, Friday, Graceland Guesthouse, Memphis, Tennessee. Watch for details.
CCHS Family Conference 2018, alongside The 5th International CCHS Conference
June 19-23, 2018 at The Chase Park Plaza, St. Louis, Missouri, USA.
Industry
New Ventilator: VOCSN Receives FDA 510(k) Clearance
VOCSN (pronounced VOX-SEN) integrates five separate medical devices, including a ventilator, oxygen concentrator, cough assist, suction, and nebulizer, into one unified respiratory system. All five therapies can be obtained or just the mix of therapies needed.
VOCSN is controlled with an intuitive touchscreen operating system and integrated Ventec One-Circuit to deliver treatments in seconds instead of minutes.
At 18 pounds, the device is 70% lighter and smaller than five devices.
It delivers up to 9 hours of continuous use (ventilation only). It has two external hot swappable lithium-ion batteries (5800 mAh each) and one internal battery (5600 mAh). (Note: Simultaneous use of therapies will decrease battery operating time.)
The team at Ventec Life Systems, headquartered in Bothell, Washington, USA, is led by Doug DeVries, a pioneer and leader with nearly four decades of experience in the field of mechanical ventilation.
Prior to forming Ventec Life Systems, Doug was Vice President of engineering for Bird Medical Technologies following Dr. Forest Bird’s departure. In 1997, Doug formed a new company to create the LTV™ portable ventilator. The introduction of the LTV™ series ventilator changed the world of portable ventilation, particularly for children who were able to leave the hospital months earlier to go home with their families.
For more details about the VOCSN, see their website at www.venteclife.com.
Philips issues recall for select V60 ventilators due to software issues
Philips Respironics recalled a select number of its V60 respiratory ventilators with its version 2.20 software over issues with the software causing the blower motor to stall and the unit to shut down, according to a recall notice released this week.
The recall affects all V60 ventilators manufactured between Aug. 17, 2016 and Jan. 4, 2017 with v2.20 software with the caveat that the recall may affect units manufactured prior to Aug. 2016 which have had v2.20 software added in the field.
Philips cautioned that the v2.20 software “may falsely detect that the blower motor has stalled” which could cause the software to shut the ventilator down and display error code 100E.
The error will be announced by a high-priority alarm for at least 2 minutes when the unit shuts down, the company said.
Should a ventilator stop due to the error, patients could face adverse events, including hypoxemia or hypercarbia due to a lack of oxygen.
Philips instructed customers to examine their devices to determine if they have the v2.20 software and to discontinue use of the devices until an appropriately functional software is installed, according to an urgent field safety notice.
Hamiliton issues recall notice for G5 Ventilator
Class I recall issued for the Hamilton G5 Ventilator because it may stop working without sounding an alarm when the operator presses the oxygen enrichment key to attach the ventilator mask to the patient (suctioning maneuver). If the operator does not intervene quickly and follow strict guidelines, the patient may not receive enough oxygen and could suffer serious injury or could die.
The G5 Ventilator was distributed from March 2007 to March 2014 and a total of 1,128 ventilators are included in the recall. Fortunately, Hamilton says it has received only one report of a ventilator malfunction and no reports of injuries or deaths.
Medtronic Announces Worldwide Voluntary Field Corrective Action for Newport™ HT70 and Newport™ HT70 Plus Ventilators (April 5, 2017)
Medtronic is notifying customers worldwide of a voluntary field corrective action for all its Newport HT70 and Newport HT70 Plus ventilators manufactured since 2010. The voluntary field corrective action is being conducted following reports that the ventilator may reset spontaneously during normal operation, without an accompanying alarm. The reported incidence of this condition is approximately one (1) reset in every seven million hours of ventilation. Following the reset, the ventilator enters standby mode and will not resume ventilation without intervention. In the event of the rare occurrence of a reset, healthcare professionals and/or caregivers are required to transfer the patient to another ventilator. See more.
Consumers should call the Technical Support Department at 1-800-255-6774.