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 30, NUMBER 4
AUGUST 2016
“The substitute respiratory therapist was here this week. She told me that the retirement centers wouldn't take me. That turned out to be correct.”
For me, aging in place would mean mowing two acres of rolling meadow every week and getting snow removed from 200 feet of a U-shaped driveway. It's a lot to mow, a lot to have plowed. How long can I keep doing this? Certainly not forever.
Due to childhood polio, I have a diagnosis of post-polio syndrome. Prior to the diagnosis, polio hypoventilation caused hypoxic heart damage resulting in atrial fibrillation. Consequently, I use the Trilogy with a mouthpiece during the day, and for overnight, I use the AVAPS (average volume assured pressure support) mode with added oxygen.........MORE
Recently, I flew from the East Coast to the West Coast. Since I use nighttime ventilation noninvasively, a Trilogy 100, it is best that I use it when I fly. Before the flight I contacted the medical affairs department of the airline, so that it would be in my reservation that I would be using the ventilator on the flight.
The Trilogy is FAA approved and I carry the papers with me proving certification. Since the Trilogy can operate in the CPAP, BiPAP, or ventilator mode, I often refer to it as a BiPAP or CPAP, since people, especially airport and airline staff, are more familiar with those terms...........MORE
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. 30, No. 4, August 2016
Editor: Joan L. Headley
Designer: Brian Tiburzi
ISSN 1066-534X
© 2016 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.
Could This Happen To You? Has It?
“The substitute respiratory therapist was here this week. She told me that the retirement centers wouldn't take me. That turned out to be correct.”
For me, aging in place would mean mowing two acres of rolling meadow every week and getting snow removed from 200 feet of a U-shaped driveway. It's a lot to mow, a lot to have plowed. How long can I keep doing this? Certainly not forever.
Due to childhood polio, I have a diagnosis of post-polio syndrome. Prior to the diagnosis, polio hypoventilation caused hypoxic heart damage resulting in atrial fibrillation. Consequently, I use the Trilogy with a mouthpiece during the day, and for overnight, I use the AVAPS (average volume assured pressure support) mode with added oxygen.
With adequate mask ventilation, this heart problem is currently controlled.
In the process of getting a diagnosis and the correct treatment, a pulmonologist advised me that I needed a tracheostomy immediately. It was then that I wrote in my advanced directives that I did not want to be trached. I have a DNR. My son and I have discussed this many times and he understands my wishes. I am not concerned about dying, but rather ending up incapacitated but with a trach.
Thinking about the future and using noninvasive ventilation, I starting making phone calls to senior living centers in my area in the rural Mid-West. All the people who answered asked me "so who manages all of this for you? A family member? Does someone come to your home every day?"
Responding truthfully, that a respiratory therapist (RT) comes to my home for one hour once a month with supplies and to get the hours off the machines to make sure I am “compliant,” I was surprised that none of them believed me. Hitting a brick wall of disbelief over my managing the machines myself, I ended up telling them that I am a physician, and then they believed me. (The RT comes to my house every three months now, since they are confident I use the machines as prescribed and take good care of them.)
Above is the stroller is that I bought for my son and his wife for their baby shower. It was used for the baby's first three years, after which she started playing with it rather than sitting in it. When my granddaughter was five, I started using it to carry around the vent in the house. When she visits, she loves to push around the stroller with the vent in it.
It certainly makes sense to me that if I manage everything at home using noninvasive ventilation with limited RT visits that I should be able to live in “independent living” and do the same. (I don’t think that my ability to do so is dependent on my being a physician, although it helps.)
When I pointed this out to the two senior center admissions directors, they stated that their staff was "very upset” about all the CPAP machines because “many” people in both independent living and assisted living used them. The usual routine, I was told, is that a home healthcare worker, paid for by the resident or their insurance, comes in every day to clean and ready the CPAP machine for that night.
They further admitted that they did not know what the terms BiPAP or bilevel meant.
Eventually, admissions called me back: One said “absolutely no” to any daytime ventilation, but “OK for CPAP” (which I don’t use), although they would have nothing to do with the machines.
The other one said “OK to both night and daytime vents,” but the tradeoff would be that since I am a physician and knowledgeable, I would be “on call” for resident problems with CPAPs day and night. There was not an option for a decrease in monthly fees ($5,000) or an option, if the electricity went out, to go to the skilled nursing area, which has a generator.
Not much in this arrangement for me. I decided that $5,000 a month would pay for an entire season of lawn mowing and snow plowing, and I'd get a full night of sleep.
Contact info@ventusers.org if you have had a similar experience.
Ventilator Users Speak
Flying with a Vent
Elaine Burns, Massachusetts
Recently, I flew from the East Coast to the West Coast. Since I use nighttime ventilation noninvasively, a Trilogy 100, it is best that I use it when I fly. Before the flight I contacted the medical affairs department of the airline, so that it would be in my reservation that I would be using the ventilator on the flight.
The Trilogy is FAA approved and I carry the papers with me proving certification. Since the Trilogy can operate in the CPAP, BiPAP, or ventilator mode, I often refer to it as a BiPAP or CPAP, since people, especially airport and airline staff, are more familiar with those terms.
On the day of the flight, I checked in with the gate agent and the head flight attendant. I think it best to have a discussion that I am traveling with the ventilator and plan on using it inflight, while I am still on the ground and not at 30,000 feet in the air. I was in a seat with a AC outlet, but the Trilogy also has enough battery power for a 5-6 hour flight.
All went smoothly and I was happy to have the opportunity to use the vent.
Carter v. Canada
A Supreme Court judgment (Carter v. Canada) now permits some Canadians to approach death on their own terms. Who should those Canadians be?
“In what many have called a 'legislative vacuum,' Canada has no statutory law with respect to euthanasia or assisted suicide, but both are permitted under the terms of the Court’s decision. This means that doctors are now exempt from prosecution when they take active steps to end the life of a consenting adult who meets the criteria specified by the Court. Specifically, those criteria are: being a competent adult, giving clear consent, having a 'grievous and irremediable' medical condition and experiencing enduring and intolerable suffering as a result of that condition.” -Excerpt from “The Last Chapter,” published in OTTAWA Life Magazine.
Discussing Carter v. Canada in "The Last Chapter," ventilator user Catherine Frazee, OC, DLitt, LLD (Hon) explains the status “assisted suicide” and the implications of the court decision. Frazee is a former member of the Federal External Panel on Options for a Legislative Response to Carter v. Canada and Professor Emerita, Ryerson University, School of Disability Studies.
A group of concerned Canadians state, “As we enter complex discussion in Canada about doctor-assisted suicide, we worry that Canadians are only getting one side of the disability story – that death is a natural choice for these poor suffering disabled people. But this story doesn’t speak to the experiences of many with disabilities.
“This project seeks to explore a different perspective; to share stories and experiences that contradict the narrative that disability is a fate worse than death.
“This is about projecting our value.
“Want to participate in #ProjectValue? Help us by liking/sharing our videos and if you're a person with a disability who lives in opposition to your diagnosis, send us a private message and we'd be happy to help you make your own #ProjectValue video!”
View the videos in which people with disabilities project their value at www.facebook.com/projectmyvalue.
A Heart Outrun
Gary Presley, Missouri
Ventilator user "Gary Presley had all but given up on the idea of finding love. But — as the romantics out there know — love can find you when you least expect it. Sometimes, even when you’re resisting it. Gary tells his story in his Modern Love essay, 'Would My Heart Outrun Its Pursuer?'" Actor Colin Farrell recites it for WBUR's Modern Love Podcast entitled, "A Heart Outrun."
Seeking Equipment
From Hawaii: I am looking for working LP-10s for personal use. Contact info@ventusers.org.
Advocacy
Update on Coverage of Vents and RADs
In the June Ventilator-Assisted Living (Volume 30, Number 3), IVUN reported on Changes in Coding and Ventilator Coverage, stating, “A group of experienced and articulate individuals representing the American Association of Respiratory Care, the American College of Chest Physicians and the National Association for Medical Direction of Respiratory Care have submitted a reconsideration of the current Medicare National Coverage Determination for home ventilators, including bi-level devices to CMS.”
The group reports that they are still waiting for a response from CMS (Centers for Medicare and Medicaid Services). The response is long overdue.
In the meantime, they are exploring a possible re-write of the Medicare statue and are having conversations with Congressional staff.
Networking
Clinical trials in Duchenne muscular dystrophy are happening and opportunities to participate in these trials abound. But what does that really mean? How do you decide to join a trial and why? Or why not? Hear from families and young men describing their own experiences and the reasoning that went into making these tough decisions. For more detailed information about clinical trials, including the risks and benefits of participation, visit PPMD's DuchenneConnect Registry at www.DuchenneConnect.org.
See other sessions from the 2016 Connect Conference.
New Patient Resource Guide: Living Well With COPD
The CHEST Foundation has revamped its Living Well With COPD guide.
Patient Education Information Series from American Thoracic Society (ATS)
Tracheostomy in Adults (Part 1)
Living with a Tracheostomy (Part 2)
Hopefully, a new symbol will educate the public about buggy type wheelchairs.
For more about accessibility in Japan, see www.accessible-japan.com.
Japan: Awareness of Buggy Wheelchairs Promoted by Mothers
Recent Relevant Publications
Caregivers and training for kids receiving chronic home invasive ventilation
Shelia Kun, RN, BSN, Steering Committee Member, Home-Based Mechanical Ventilation and Neuromuscular Disease NetWork
Despite years of experience in discharging pediatric patients receiving chronic home invasive ventilation, their mortality rate remains high, ranging from 21% to 27.5% with unscheduled readmission at 40% (Boroughs et al. Home Health Nurse. 2012;30:103) to 21% (Edwards et al. J Pediatr. 2010;157[6]:955; Kun et al. Pediatr Pulmonol. 012:47[4]:409). While there were major improvements in technology and newer ventilators, and better community resources, the one key component of our HMV program remains the same – the caregivers. It is a frightening experience for every family to hear that their child needs ventilator support: every discharge is a daunting task and a life-changing experience.
It seems logical to postulate that we might have improved mortality/readmission outcomes if we have competent caregivers.
Recent ATS guidelines recommend that “an awake, trained caregiver should be present at all times, and at least two family caregivers should be trained specifically for the child’s care” (Am J Respir Crit Care Med. 2016;193[8]:e16).
The need to shore up on emergency care in the home is further supported when we review studies examining pediatric emergency home ventilation practices for both families and licensed home health nurses (Kun et al. Pediatr Pulmonol. 2010;45[3]:270; Kun. Pediatr Pulmonol. 2015;50[7]:691).
Understanding and responding to ventilator alarms remain a major challenge for caregivers and home health nurses. Future directions where we can help our caregivers and families improve home emergency care training include simulation video and using the technology of hand-held devices.
Reprinted with permission: CHEST Physician. 2016;11[7]:51.
Other Articles
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"Current issues in cardiorespiratory care of patients with post-polio syndrome" was published by Arq Neuropsiquiatr [2016 Jul;74(7):574-579], the official journal of the Brazilian Academy of Neurology (ABN). It is available in English online or as a PDF. It is a good summary of respiratory care in polio survivors with comments about cardiovascular disease.
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In ALS Patients, NIV Improved Respiratory Muscle Function (Original article.)
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OK to Stop Antibiotics after 5 Days in Stable CAP (Community-acquired pneumonia): Findings validate IDSA/ATS treatment guidelines.
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Device developed by UCLA scientists tricks newborns’ brains into thinking that they’re running. Simple treatment studied for common breathing problem. (Original article.)
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Seattle Children’s Craniofacial Center surgery helps children with severely restricted airways breathe without a tracheostomy. The subcranial rotation distraction surgery improves the airway and jaw position in children with Treacher Collins syndrome.
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FDA updates warnings for fluoroquinolone antibiotics
Educational Opportunities
European Respiratory Society (ERS) International Congress 2016
September 3-7, 2016, London, United Kingdom. More.
Interdisciplinary Practices for Ventilator and Tracheostomy Use and Liberation
September 30, 2016, 8:00 am - 12:00 pm, Madonna Rehabilitation Hospital, Lincoln, Nebraska, presented by Passy Muir & Vapotherm. CEUs offered. For questions, contact Gail Sudderth, gsudderth@passy-muir.com.
AARC Congress 2016
October 15-18, 2016, American Association for Respiratory Care Congress 2016: 62nd International Respiratory Convention & Exhibition, San Antonio, Texas. Details and registration.
CHEST 2016
Margaret Pfrommer Memorial Lecture in Long-term Mechanical Ventilation
Tuesday, October 25, 2:45 pm – 4:15 pm
Thomas G. Keens, MD, Professor of Pediatrics, Keck School of Medicine of University of Southern California, Los Angeles. See more about the Lecture and Margaret Pfrommer.
Home-Based Mechanical Ventilation and Neuromuscular Disease NetWork Featured Lecture
Sleep Disordered Breathing in Neuromuscular Disease
Tuesday, October 25, 7:30 am- 8:30 am
Michelle Cao, MD, Clinical Assistant Professor, Psychiatry and Behavioral Sciences, Stanford Center for Sleep Sciences and Medicine, Palo Alto, California.
NetWork business meeting included.
FOCUS Fall 2016
October 27, 2016, Thursday, Poughkeepsie Grand Hotel & Conference Center, Poughkeepsie, New York. Details and registration.
Canadian Respiratory Conference 2017
April 20 - 22, 2017 - Montréal, Québec. More information here.
Parent Project Muscular Dystrophy 2017 Annual Connect Conference
June 29 to July 2, 2017, Chicago, Illinois. Save the date.
CCHS Family Conference 2018, alongside The 5th International CCHS Conference
June 19-23, 2018 at The Chase Park Plaza, St. Louis, Missouri, USA.
JIVD/ERCA Conference in 2018
First announcement: JIVD (Journées Internationales de Ventilation á 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.
Industry
CareFusion Recalls AVEA Ventilator
CareFusion is recalling the AVEA Ventilator because of a faulty fuse on the ventilators’ alarm board, which may cause the ventilator to unexpectedly shut down. If the ventilator shuts down, a patient may not receive necessary oxygen. The use of affected product may cause serious adverse health consequences, including death. Last update August 3, 2016.
Dräger and ICON* Prepared to Support Hospitals with Ventilators During Times of Crisis
An emergency cache of ten Dräger Carina ventilators will be made available for immediate dispatch to hospitals stricken with emergency situations, according to a company press release.
* Intensive Care On-line Network (ICON) was established September 2001 with the mission to promote successful implementation of ICU therapies and technologies by offering on-demand 24x7 clinical focused support service.
Dräger Recalls VentStar Oxylog 3000 Pediatric Patient Breathing Circuit Due to Potential Valve Leakage
This Class I recall is the most serious type of recall. Use of these devices may cause serious injuries or death. The VentStar Oxylog 3000 disposable pediatric patient breathing circuit is used with the Dräger Oxylog 3000 and Oxylog 3000 plus Emergency Transport Ventilators for pediatric patients who require ventilation. Last update August 4, 2016.
From Passy -Muir
Kristin King, PhD, CCC-SLP is the new Vice President of Clinical Education and Research at Passy-Muir.
Philips Activates Trilogy to Connect to Care Orchestrator
Philips Respironics today announced that its Trilogy family of portable ventilators will be activated to connect to the Care Orchestrator care management application. Philips has distributed connectivity-ready Trilogy ventilators in North America since 2015 in preparation for the Care Orchestrator launch in 2016.
ResMed Awarded Contract with Premier
ResMed was awarded a group purchasing contract with Premier, a healthcare improvement company uniting an alliance of approximately 3,600 U.S. hospitals and 120,000 other providers.
ResMed Takes Fisher & Paykel to Court over Patents
ResMed filed patent infringement actions against Fisher & Paykel Healthcare in U.S., German and New Zealand courts and in the U.S. International Trade Commission.