IVUN
INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
VENTILATOR-ASSISTED LIVING
VOLUME 38, NUMBER 3
JULY 2024
In July 1993, Cynthia Bissell faced the challenge of caring for twin sons, Eric and Aaron, born three and a half months prematurely. While Eric struggled with spastic quadriplegic cerebral palsy, Aaron faced severe respiratory issues, including bronchopulmonary dysplasia and acquired subglottic stenosis—a condition caused by ventilator tube damage during his time in the NICU. At just one month old, Aaron underwent tracheotomy surgery and remained oxygen-dependent for several years. After three months in the NICU, Cynthia was able to bring her twins home..........................................................................MORE
CONNECTING
VENTILATOR USERS,
HEALTH PROFESSIONALS,
AND INDUSTRY
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
Ventilator-Assisted Living
Vol. 38, No. 2, July 2024
Editor: Brian Tiburzi
Designer: Brian Tiburzi
ISSN 1066-534X
© 2024 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.
Connecting Through Care:
Cynthia Bissell’s Lifelong Commitment to Tracheostomy
and Ventilator Support
In July 1993, Cynthia Bissell faced the challenge of caring for twin sons, Eric and Aaron, born three and a half months prematurely. While Eric struggled with spastic quadriplegic cerebral palsy, Aaron faced severe respiratory issues, including bronchopulmonary dysplasia and acquired subglottic stenosis—a condition caused by ventilator tube damage during his time in the NICU. At just one month old, Aaron underwent tracheotomy surgery and remained oxygen-dependent for several years. After three months in the NICU, Cynthia was able to bring her twins home.
During the twins' early, difficult years, Cynthia was often housebound and relied on the internet for information and support. Finding limited resources on tracheostomy care, she combined her nursing background and computer skills to create "Aaron’s Tracheostomy Page" in 1996. This website, dedicated to her son Aaron, quickly became a crucial resource for families in similar situations, highlighting the significant need for accessible tracheostomy information.
Aaron Bissell
Over the years, Cynthia’s efforts have evolved to keep pace with technological changes and the needs of the community, moving from message boards to social media platforms. Today, her Facebook group, with over 8,000 members, serves as a vital support network for individuals and families managing tracheostomies and home mechanical ventilation.
A Dedicated Start
Cynthia’s initial website offered crucial information for families managing pediatric tracheostomies. Taking on care responsibilities for a child that has a tracheostomy can often be overwhelming and confusing for parents that have little knowledge or experience doing so. For new parents in this situation, Aaron’s Tracheostomy Page offered a lifeline, providing a wealth of practical information on the ins and outs of pediatric tracheostomy care. This effort was later expanded into a guide published by Jones & Bartlett in 2000. Although the guide is now out of print, it marked an important step in providing valuable resources to families. Cynthia also created a listserv and message boards to facilitate discussion and support among users.
Cynthia Bissell
The pediatric board quickly gained popularity, and Cynthia fondly recalls, “The connections we created via this board became friendships that are still strong today.” The success of these boards led to the organization of three national tracheostomy conferences, which featured expert speakers and offered meaningful activities for families. “We had three national conferences, in 2004, 2006 and 2008. The first two were in St. Louis, the third was in Cincinnati. We had world-renowned otolaryngology speakers and lots of fun activities for families of kids with tracheostomies,” Cynthia adds. These events provided essential networking opportunities and support for families.
Adapting to New Platforms
As social media began to rise, the landscape of online support changed. “Eventually, with the coming of social media sites—especially Facebook—message boards and listservs became obsolete,” Cynthia explains. Her focus shifted from maintaining a website to managing a Facebook group, which now has over 8,000 members. “My website is still live at tracheostomy.com, but I don’t keep up with it anymore,” she notes.
Cynthia’s Facebook group now serves a broad audience, including both pediatric and adult tracheostomy users, as well as those who use home mechanical ventilation. Although Cynthia acknowledges her limited experience with ventilators, her extensive background as a registered nurse for over 40 years provides her with a broad understanding of special needs care. “I had a trach as a baby, and I’ve had two children with tracheostomies,” she shares.
Evolving Support
The transition from message boards to Facebook has had its challenges. Cynthia notes, “The message boards were better than Facebook in my opinion. They were divided into topics and easier to read, search, and follow.” Despite this, she recognizes the value of Facebook in reaching a wider audience. “Topics on Facebook tend to get buried quickly, but the group still provides valuable support,” she says.
The focus of the Facebook group remains on providing peer support and networking. “Popular topics tend to be either adults with trachs due to chronic disease such as laryngectomies for cancer, or pediatrics with preemies who have airway or respiratory problems,” Cynthia explains. The group also facilitates the sharing of supplies and other resources, enhancing the support network.
Managing a large Facebook group comes with its own set of challenges. “I even have trouble keeping up with the Facebook group, as it has so many members and it is very busy,” Cynthia admits. Nevertheless, she is committed to maintaining a positive environment. “I do occasionally get reports of problem users and block them,” she says. “Thankfully we don’t get a lot of that, and most people find the group very helpful.” Cynthia has established a “terms of service” – which prohibits such things as selling services, solicitations or fundraising, and making false or defamatory comments – to help ensure the group remains a supportive and respectful space.
A Lasting Commitment
Cynthia’s work in supporting families with tracheostomies and mechanical ventilation highlights her dedication to care and community. “While face-to-face support groups are great, the internet has made it possible for people to connect from anywhere in the world,” Cynthia observes. Her Facebook group stands as a testament to her ongoing commitment to providing support and fostering connections among individuals and families facing these challenges.
For those looking for support and community, Cynthia Bissell’s Facebook group offers a valuable resource. Cynthia’s journey and the community she has built continue to offer hope and assistance to many navigating the complexities of tracheostomy and home mechanical ventilation care.
ADVOCACY
Disability Advocates Express Concern Over Recent Supreme Court Ruling
The U.S. Supreme Court has overturned a 40-year precedent that required courts to defer to federal agencies' interpretations of ambiguous laws. This change, resulting from the Loper Bright Enterprises v. Raimondo case, overrules the 1984 Chevron v. Natural Resources Defense Council decision.
Chief Justice John G. Roberts Jr. stated that courts must now independently determine if agencies are acting within their authority without deferring to the agencies' interpretations. This ruling raises concerns among disability advocates, who fear it could lead to numerous legal challenges against federal regulations protecting disability rights.
Federal regulations are crucial for implementing laws like the Americans with Disabilities Act and the Individuals with Disabilities Education Act. Advocates worry that the new ruling might result in more cautious regulatory approaches and an increase in litigation, potentially undermining decades of progress in disability rights.
Experts emphasize that the regulatory process involves subject matter experts and public comments, ensuring that the needs of people with disabilities are considered. The shift to court interpretations could overlook these expert insights, leading to less informed and consistent legal decisions affecting people with disabilities.
US Department of Justice Cites Multiple States For Disability Rights Violations
On the 25th anniversary of the Supreme Court's Olmstead v. L.C. decision, which affirmed the rights of people with disabilities to live in the community, the Department of Justice is addressing violations of the Americans with Disabilities Act (ADA) in multiple states. Investigations revealed that Utah and Missouri are unnecessarily segregating people with disabilities, while Alaska, Ohio, and Alabama have violated the rights of voters with disabilities.
In Utah, the state relies too much on sheltered workshops and day programs, segregating individuals with intellectual and developmental disabilities (I/DD) and limiting their interaction with others. Missouri was found to be over-institutionalizing adults with mental health disabilities in nursing facilities due to insufficient community-based services and over-reliance on guardianships. Alaska failed to provide accessible voting options, including accessible ballots, polling places, and an elections website. Ohio and Alabama also faced scrutiny for not adequately supporting voters with disabilities.
Advocates have applauded the Justice Department's actions, recognizing them as steps toward fulfilling Olmstead’s promise while cautioning that continuous effort is needed to achieve true, full integration of people with disabilities into society.
NETWORKING
CCHS Network Family Conference 2024
The CCHS Network held their family conference at the end of June in Newport Beach, California. The conference featured twelve expert speakers as part of its educational program, while also offering CCHS families the opportunity to renew friendships, celebrate their accomplishments, and emphasize the power of advocacy. This year marked the 35th anniversary of the CCHS Network and was the network's 9th Family Conference. The 10th International CCHS Day will take place in September.
Major Tech Companies Introduce New Accessibility Features
Apple is introducing new features to make its devices more accessible for people with disabilities, including eye-tracking technology for iPads and iPhones. This feature allows users to control their device using only their eyes, utilizing the front-facing camera and artificial intelligence without needing extra hardware. The data will be stored on the device, ensuring privacy.
Additionally, Apple is enhancing support for those with speech issues through Vocal Shortcuts, allowing users to activate Siri with custom sounds, and Listen for Atypical Speech, which uses machine learning to understand diverse speech patterns. Other updates include live captioning for FaceTime and tactile feedback for music for those who are deaf or hard of hearing.
Google, too, is introducing several accessibility updates and new initiatives to support content creators with disabilities. Enhancements will benefit individuals with blindness or low vision, cognitive disabilities, and physical accessibility needs.
Product updates include a new "find mode" in Lookout, an Android feature, to help users locate objects like seating and bathrooms. The Look to Speak app, which allows users to select phrases with eye movements, will add a text-free mode using personalized emojis, symbols, and photos. Google Maps will improve screen reader support and voice guidance for better navigation, and the wheelchair accessibility icon will now be displayed on desktop computers as well as mobile devices.
RECENT RELEVANT PUBLICATIONS
Update in Noninvasive Home Mechanical Ventilation: A Narrative Review of Indications, Outcomes, and Monitoring
Tregidgo L, Naran P, Gosal E, D'Cruz RF.
“Patients at risk of developing chronic respiratory failure and those with established disease should be referred to a specialist ventilation unit for evaluation and consideration of home noninvasive ventilation (NIV) initiation. Clinical trials demonstrate that, following careful patient selection, home NIV can improve a range of clinical, patient-reported, and physiological outcomes. This narrative review provides an overview of the pathophysiology of chronic respiratory failure, evidence-based applications of home NIV, and monitoring of patients established on home ventilation and describes technological advances in ventilation devices, interfaces, and monitoring to enhance comfort, promote long-term adherence, and optimize gas exchange.”
Can Respir J. 2024 Jul 3;2024:7013576. doi: 10.1155/2024/7013576.
Home Noninvasive Ventilation in COPD
Kaminska M, Adam V, Orr JE.
“Evidence is increasing that long-term noninvasive ventilation (LTNIV) can improve outcomes in individuals with severe, hypercapnic COPD. Although the evidence remains unclear in some aspects, LTNIV seems to be able to improve patient-related and physiologic outcomes like dyspnea, FEV1 and partial pressure of carbon dioxide (Pco2) and also to reduce rehospitalizations and mortality. Efficacy generally is associated with reduction in Pco2. To achieve this, an adequate interface (mask) is essential, as are appropriate ventilation settings that target the specific respiratory physiologic features of COPD. This will ensure comfort, synchrony, and adherence that will result in physiologic improvements. This article briefly reviews the newest evidence and current guidelines on LTNIV in severe COPD. It describes an actual patient who benefitted from the therapy. Finally, it provides strategies for initiating and optimizing this LTNIV in COPD, discussing high-pressure noninvasive ventilation, optimization of triggering, and control of inspiratory time. As demand increases, clinicians will need to be familiar with this therapy to reap its benefits, because inadequately adjusted LTNIV will not be tolerated or effective.”
Chest. 2024 Jun;165(6):1372-1379. doi: 10.1016/j.chest.2024.01.030.
Invasive versus non-invasive paediatric home mechanical ventilation: review of the international evolution over the past 24 years
Toussaint M, van Hove O, Leduc D, Ansay L, Deconinck N, Fauroux B, Khirani S.
“The rate of children receiving additional daytime HMV was higher with IMV as compared with NIV (69% vs 10%, p<0.001). The evolution of paediatric HMV over the last two decades consists of a growing number of children using HMV, in parallel to an increasing use of NIV in recent years (2020-2023). There is no clear trend in the profile of children over time (age at HMV). However, an increasing number of patients requiring HMV were observed in the Gen/Cong, CNS and Others groups. Finally, the estimated prevalence of paediatric HMV was calculated at 7.4/100 000 children.”
Thorax. 2024 May 20;79(6):581-588. doi: 10.1136/thorax-2023-220888.
A history of home mechanical ventilation: The past, present and future
D'Cruz RF, Hart N.
“This state-of-the-art review provides an overview of the history of home mechanical ventilation (HMV), including early descriptions of mechanical ventilation from ancient and Renaissance perspectives and the mass development of ventilators designed for long-term use during the poliomyelitis epidemic. Seminal data from key clinical trials supports the application of HMV in certain patients with chronic obstructive pulmonary disease, neuromuscular disease and obesity-related respiratory failure. Innovative engineering coupled with refined physiological understanding now permits widespread delivery of home mechanical ventilation to a global population, using portable devices with advanced ventilatory modes and telemonitoring capabilities. Exponential growth in digital technology continues, and ongoing research is needed to understand how to harness clinical and physiological data to benefit patients and healthcare services in a clinically- and cost-effective manner.”
Chron Respir Dis. 2024 Jan-Dec;21:14799731241240776. doi: 10.1177/14799731241240776.
EDUCATIONAL
OPPORTUNITIES
1st International Pediatric Home Mechanical Ventilation Conference
This Conference, focused on Home mechanical ventilation in children, will be offering practical advances to pediatric pulmonologists, pediatric intensivists, young pediatricians, neonatologists, and pediatric and neonatal intensive care nurses/respiratory therapists. The Conference will overlap with the 6th International Conference on Pediatric and Neonatal Non-invasive Ventilation and will take place September 27-28, 2024 in Barcelona, Spain. Additional information and registration is available here.
CHEST 2024
CHEST 2024 will be held in Boston, Massachusetts, October 6-9, 2024. Registration is available on their site. The meeting promises to deliver the most up-to-date education in clinical pulmonary, critical care, and sleep medicine with world-class speakers, hands-on simulation opportunities, interactive educational games, and much more.
JIVD-ERCA 2025
The 17th International Conference on Home Mechanical Ventilation and 8th European Respiratory Care Association Congress will be held jointly March 6-8, 2025, at Cité Centre de Congrès, Lyon, France. For more information, go to www.jivd-erca2025.com.
INDUSTRY
FDA Recall: Baxter Life2000 Ventilator
Baxter is recalling the Life200 Ventilator System due to the potential for failure of the battery charging dongle, which can prevent the system from charging or only allow for intermittent charging.
Use of affected products may cause serious adverse health consequences, including a drop in oxygen levels (desaturation episodes) if the ventilator stops running or only runs intermittently due to a low battery. These desaturation episodes may range from mild to potentially life threatening, or even cause death if the patient is critically ill. There has been one reported injury. There have been no reports of death.
Customers in the U.S. with questions about this recall should contact Baxter Acute Care Customer Service Support at 800-426-4224, option 2, between the hours of 8:00 am and 5:00 pm CST, Monday through Friday.