IVUN
INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
CONNECTING
VENTILATOR USERS,
HEALTH PROFESSIONALS,
AND INDUSTRY
IVUN
INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
VENTILATOR-ASSISTED LIVING
VOLUME 38, NUMBER 4
SEPTEMBER 2024
Helen Carter has lived in Charlotte, North Carolina, nearly her entire life. Her earliest years were spent in Asheboro, about an hour-and-a-half drive northeast of Charlotte. She doesn’t remember much about her time in Asheville but recalls clearly the reason for the move. “When I was 3 years old, I caught a pretty bad case of polio. I was first admitted to the Asheville Orthopedic Home, which was where most polio cases in the area were treated. I was later transferred to Charlotte, where they felt my needs would be better met. I don’t remember how long I was in the hospital, but it was many months. My father drove a truck for a living and ended up taking a job in Charlotte so he and my mother could be close by.” After Helen was released from the hospital, her parents decided to stay in Charlotte......................................................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. 4, September 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.
Adjusting to Change
Helen Carter has lived in Charlotte, North Carolina, nearly her entire life. Her earliest years were spent in Asheboro, about an hour-and-a-half drive northeast of Charlotte. She doesn’t remember much about her time in Asheville but recalls clearly the reason for the move. “When I was 3 years old, I caught a pretty bad case of polio. I was first admitted to the Asheville Orthopedic Home, which was where most polio cases in the area were treated. I was later transferred to Charlotte, where they felt my needs would be better met. I don’t remember how long I was in the hospital, but it was many months."
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Being separated from her family and childhood home was hard. Her family soon made the decision to uproot their lives to be closer by. “Well, my father drove a truck for a living and ended up taking a job in Charlotte so he and my mother could be close by.” After Helen was released from the hospital, her parents decided to stay in Charlotte.
Her struggles didn't end with her hospital stay, however. Polio left her with a weakened left side. “I went through years of rehabilitation and several surgeries. It was tough, but my family was very supportive. When I think back on my childhood, I mostly remember it as a pretty idyllic time. I knew I was different from the other kids, but I was determined not to allow polio to define me.” With her trademark determination, Helen learned to navigate the world with mobility aids, embracing new challenges with grace. “My parents always taught me that limits are only in the mind,” she recalled.
Embracing Life
As Helen grew, she found joy and fulfillment, but she also faced societal stigma and physical obstacles. “My high school was two stories and back then there wasn’t any way to get to the upper floor except up a steep flight of stairs. I remember having to basically pull myself up those stairs on my backside in order to get to some of my classes. There weren’t any ramps back then, either. There were so many stores and friends’ houses that had a single step leading to the door, not an insurmountable obstacle but one that always left me at the mercy of needing an adult to help get my chair up and over.”
Helen went on to pursue a degree at North Carolina State University and later became a teacher at a small private school just outside of Charlotte. She married and raised a family, all while learning to advocate for herself. “If someone told me I couldn’t do something, that only made me more determined,” she said. “I’ve always believed in living life to the fullest, no matter the circumstances.”
A New Challenge
In recent years, however, Helen's health began to shift. With age, she experienced respiratory difficulties, and earlier this year, her pulmonologist recommended she start using a Bi-PAP machine, a necessity she is learning to embrace.
Adjusting to the Bi-PAP has been a journey in itself. "It felt strange at first—like I was admitting defeat," she confided. "But then I realized it’s not about giving up; it’s about adapting to a new chapter of life."
Helen describes the initial nights spent struggling with the machine’s rhythm, the unfamiliar sounds filling her room. "I felt like I was wrestling with it," she laughs, "but eventually, I found a way to make peace with it. It’s become part of my nighttime routine."
Finding Support
Support from family and friends has been crucial during this transition. Her daughter, Sarah, has been particularly instrumental. “I’m so proud of Mom,” Sarah shares, her admiration evident. “She’s faced so many challenges, and she handles this one with the same strength as always.”
Helen also participates in virtual post-polio support group meetings. She’s not the only one in the group with respiratory issues. “Connecting with others who understand my challenges has been invaluable,” she says. “We share tips, stories, and sometimes just a good laugh. It’s a reminder that I’m not alone in this.”
Looking Ahead
Despite the challenges, Helen remains optimistic about the future. She continues to advocate for disability rights and awareness of post-polio syndrome in her community. "There’s a lot to be done, and I want to be a part of that change," she asserts passionately.
Reflecting on her life’s journey, Helen says she’s grateful for the “gifts” polio has given her. "Polio taught me resilience, and now this Bi-PAP teaches me adaptation. Life is full of surprises, and I intend to face them all head-on."
In the vibrant city of Charlotte, Helen Carter stands as a testament to strength and adaptability, inspiring others to embrace their own challenges with courage and grace. As she navigates this new phase, she reminds us that while circumstances may change, the spirit remains unyielded.
ADVOCACY
CMS Urges States to Safeguard HCBS for People with Disabilities
Federal officials are urging states to take steps to ensure that individuals with disabilities are not unintentionally dropped from Medicaid home and community-based services (HCBS). With the resumption of Medicaid renewals following a pause during the COVID-19 pandemic, over 25 million people have already lost coverage, according to a report from the Kaiser Family Foundation. The Centers for Medicare & Medicaid Services (CMS) has issued a 35-page bulletin emphasizing the importance of maintaining eligibility for individuals with disabilities, warning that losing HCBS could lead to adverse health effects or forced institutionalization. The guidance highlights states' obligation to renew Medicaid eligibility based on available data, minimizing the burden on beneficiaries and ensuring continued access to critical services.
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CMS is also encouraging states to adopt more flexible approaches to support individuals in retaining HCBS. This includes simplifying income and asset evaluations, improving collaboration with other agencies, and implementing measures to restore coverage swiftly when eligibility is lost by mistake. For states with limited HCBS waiver enrollments, CMS suggests holding enrollment slots or giving priority to individuals who lost coverage unintentionally. The overarching message from CMS is that access to HCBS is vital for allowing people with disabilities to live independently, and states must adopt policies that protect this access and prevent unnecessary institutionalization.
Disability Pride Campaign Challenges Stereotypes Nationwide
A public service announcement titled “D1$@B1L*tY is Not a Dirty Word” recently launched nationwide, aiming to challenge negative stereotypes about disabilities. Created by and starring individuals with disabilities, the campaign aired during the Paralympics on NBC and its platforms, as well as on various television and streaming services. The one-minute video featured 12 people with diverse disabilities, encouraging viewers to embrace their differences and "say disability with pride."
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The campaign, created by Easterseals Southern California and produced by The House of JOY, was developed in collaboration with people with disabilities and their families, and employed individuals with disabilities in its production. The PSA has aired on multiple media platforms, billboards, and in print, and will run through the end of the year.
NETWORKING
CCHS Network Celebrates 10th International CCHS Day
On September 28th, CCHS Network held its 10th International CCHS Day. The campaign seeks to spread awareness and raise funds to educate the public about congenital central hypoventilation syndrome (CCHS), advocate for those with the disease, and raise funds for research. Previous campaigns have raised over $3 million for the cause. You can check out their CCHS Day Telethon Talent Show on Instagram.
From the ALS Association: Telehealth Expands Care Access for ALS Patients, But Barriers Remain
A recent ALS Association blog post highlights the growing importance of telehealth in providing care for people with ALS, especially during and after the Covid-19 pandemic. It has proven particularly beneficial for those who are geographically distant or whose disease progression makes it difficult to visit clinics in person. Telehealth has allowed healthcare teams to deliver essential services directly to patients' homes, offering flexibility and even allowing specialists to assess home environments for better treatment. While telehealth has improved access to care, ongoing barriers, like state-line restrictions on medical consultations, still limit its availability. The ALS Association and advocates are pushing for policy changes to ensure universal access to telehealth services.
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Users of non-invasive ventilation might be particularly interested in this story because telehealth can provide them with easier, more frequent access to medical professionals without the physical strain of visiting a clinic. Many people using non-invasive ventilation often have mobility challenges or may be prone to fatigue, making in-person visits exhausting. Telehealth offers a convenient and less taxing option for receiving care, monitoring ventilation needs, and adjusting treatments remotely, which is crucial for maintaining their quality of life.
RECENT RELEVANT PUBLICATIONS
Initiation of Chronic Non-invasive Ventilation
Duiverman, Marieke L et al.
“Initiation of home non-invasive ventilation (NIV) requires careful consideration of the patient's condition, motivation, expectations, wishes, and social circumstances. The decision to start NIV depends on a combination of factors including patient symptoms and objective evidence of nocturnal hypoventilation. A solid understanding of the underlying pathophysiology is key to a systematic and well-balanced clinical approach to titrating NIV. The location where NIV is initiated is not the most relevant issue, provided that it is a comfortable, safe environment in which adequate monitoring can be assured. The majority of patients prefer their own home for treatment initiation.”
Sleep medicine clinics. 2024;19(3): 419-430. doi:10.1016/j.jsmc.2024.04.006
The transition from children to young people living with home mechanical ventilation
Israelsson-Skogsberg, Åsa et al.
“The transition into adulthood is a sensitive and challenging time for young people with HMV, but stable, close relationships and a well-organized transfer can enable this group to feel safe and able to find and use their own voice.”
International journal of qualitative studies on health and well-being. 2024;19(1):2399432. doi:10.1080/17482631.2024.2399432
Young adults' narratives about living with home mechanical ventilation - a phenomenological hermeneutical study
Israelsson-Skogsberg Å, Palm A, Lindahl B, Markström A, Ekström M.
“An increasing number of children and young adults are treated with home mechanical ventilation due to respiratory failure. The home mechanical ventilation treatment provided rest from breathing and improved sleep quality in such a way that work and higher studies could be managed. Longstanding access to a supportive multi-professional healthcare team provided feelings of being safe, which in turn boosted self-confidence in life and preparedness to meet new challenges.”
Disabil Rehabil. 2024;46(19):4495-4502. doi:10.1080/09638288.2023.2278187
Healthcare Utilization and Costs in Children Receiving Home Mechanical Ventilation in Ontario: A 14-Year Cohort Study
Amin R, Verma R, Bai YQ, et al.
“Children progressing to the need for HMV represent a worsening in their respiratory status that will undoubtedly increase healthcare utilization and costs. We found that the initiation of HMV in these children can reduce inpatient healthcare utilization and costs but can still increase overall healthcare expenditures, especially in the outpatient setting.”
Ann Am Thorac Soc. Published online July 3, 2024. doi:10.1513/AnnalsATS.202401-105OC
EDUCATIONAL
OPPORTUNITIES
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.
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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.
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