Ventilator-Assisted Living (Vol. 36, No. 6, December 2022)

“I don’t get it,” my daughter tells me. “One second you’re complaining about everyone staring at you, the next that everyone is ignoring you. So, which is it?”

I felt her frustration. There’s a paradox of sorts that I feel when I venture out into public on my vent. It seems as if the whole world is staring at me, yet I also feel strangely invisible. How can these seemingly contradictory feelings exist in me at the same time?

I’ve been thinking a lot lately about visibility, about what it means to be “seen.” Is it seeing depictions of people like us, ventilator users, in popular media? There’s certainly not a lot of representation there. Typically, when you do see someone on a vent, it’s almost invariably in a hospital in an acute situation. In other words, in the rare instances where you see someone on a vent, it’s usually plot related. You don’t see many (or any?) fully-realized characters who simply happen to rely on home mechanical ventilation................................................................................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

Industry
The business of living with a ventilator

CONNECTING

VENTILATOR USERS,

HEALTH PROFESSIONALS,

AND INDUSTRY

Ventilator-Assisted Living

Vol. 36, No. 6, December 2022

Editor: Brian Tiburzi

Designer: Brian Tiburzi

ISSN 1066-534X

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.

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Martinez

Judy Martinez, Charlotte, North Carolina

The Invisibility of the Ventilator User

“I don’t get it,” my daughter tells me. “One second you’re complaining about everyone staring at you, the next that everyone is ignoring you. So, which is it?”

I’ve been thinking a lot lately about visibility, about what it means to be “seen.” Is it seeing depictions of people like us, ventilator users, in popular media? There’s certainly not a lot of representation there. Typically, when you do see someone on a vent, it’s almost invariably in a hospital in an acute situation. In other words, in the rare instances where you see someone on a vent, it’s usually plot related. You don’t see many (or any?) fully-realized characters who simply happen to rely on home mechanical ventilation. Representation for many marginalized groups has improved in recent years in film and television, but for us, it remains elusive.

Why don’t we see more depictions of ventilator users in popular media? Perhaps, it’s because historically we’ve not been very visible in the real world. When I was a young girl, stricken with polio, I was for a time confined to an iron lung – not the most portable of devices. I was a child, so my world was necessarily already pretty small before I got polio. Yet, I remember the distinct feeling even then that it had greatly shrunk, that my world would never extend beyond whatever four walls housed my iron lung.

Eventually, I recovered to an extent that I was able to leave the iron lung. And, I thought that would be it; that I would never again be tied to a machine. But decades later, I found myself once again needing the assistance of a machine to breathe. And while advances in technology meant I wouldn’t have to slide back into an iron lung, it still meant being tied to a rather heavy, rather chunky contraption. That feeling of my world shrinking came flooding back.

Over time, though, ventilators progressively got lighter and more compact. My current ventilator, a Ventec VOCSN, allows me to move about easier than any of my old vents did. I’m sure many other vent users probably can attest to the same. In many ways, we’re more visible now than we’ve ever been. Yet, when I’m out, why do I feel so invisible to others? Why does it seem like many strangers actively avoid trying to acknowledge my presence? (I assure you it’s not my personality. At least I hope.) When I’m at a restaurant with my daughter or a friend, the waiter almost invariably addresses them first, sometimes adding, “And what would she like?”, as if I’m not a real person with agency.

When many people look at me, it’s as if they see the machine first – a machine that probably causes them some amount of anxiety. After all, as I mentioned above, most people only ever see ventilators in popular media in the context of some dire, precarious medical setting. For many, perhaps, it’s a reminder of their own mortality. A reminder that, at any moment, some unforeseen illness or accident could land them in the same situation. So, in a sense, I get why others may not want to confront that reality; why some might find it easier to look away.

Yet, I wish those same people might look past the machine, the circuits, the mask, the reminders of their own mortality and truly see me – someone with the same desires, needs, dreams, and fears as everyone else. I wish they would push through their initial feelings of unease and discomfort and see the individual. But, how do we get there? How do we help people really “see” us?

I guess that brings me back to the issue of representation. Some people might downplay this issue. It can seem secondary to more pressing real world issues: the availability of vent supplies, access to quality health care, strengthening and enhancing home and community-based services. Yet, who is going to help us fight for this if we remain largely invisible? I don’t know how many people currently use home mechanical ventilation, but it’s obviously not as large as many other interest groups lobbying for support. We need allies, people to fight alongside us and support our cause. That starts with making ourselves be seen.

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ADVOCACY

Advocacy

Highlighting Rural Health

November 17th was National Rural Health Day, designated by the National Organization of State Offices of Rural Health. This year's theme, Celebrate the Power of Rural, honored the selfless, community-minded, and determined spirit of rural America.

Research has shown that people with disabilities in rural communities have higher rates of disability and age into disability faster than people in urban areas. According to the Centers for Disease Control and Prevention, 1 in 3 adults living in rural communities have at least one disability, and 1 in 12 report having 3 or more disabilities. Visit NARIC's Spotlight blog to explore some of the history of research in this area and current projects empowering people with disabilities and providers in rural communities.

Shortage of Home Care Workers Persists

We've reported previously on the shortage of home care workers. It continues to be a major problem for those with disabilities. Disability Scoop, focusing on Wisconsin, explores the current landscape in an article entitled, "Shortage Of Home Care Workers A ‘Real Challenge.’"

The article notes that “home care for people with disabilities, long a challenge, is becoming more difficult, with demand for the care growing, the COVID-19 pandemic worsening the workforce shortage and wages failing to keep up with inflation and other types of jobs, recent reports say.

“As a result, long-term care employers are facing acute recruitment and retention challenges as they compete with employers from other industries that can offer higher wages in a fiercely competitive labor market.”

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Networking

NETWORKING

CHAMP Camp 2023

CHAMP Camp provides a summer camp experience for children and adolescents with tracheostomies and those who require respiratory assistance. Our campers enjoy and fully participate in outdoor summer camp activities including swimming, canoeing, climbing and zip lining to encourage independence, confidence and self-esteem and create memories that last a lifetime.

Camper Criteria:

Camper must have a signed statement from a physician indicating the camper is medically stable.
Camper must be at least six years old and is eligible to attend until directly follwing their 18th birthday.
Camper's developmental level must meet cognitive/social milestones consistent with a 6 year old or greater.
Camper has a communication system which allows for effective peer/counselor interaction.
Camper has respiratory needs requiring one of the following: trachestomy, ventilator, BiPAP, CPAP or oxygen dependency due to primary lung disease, with stable oxygen requirements.
Camper has respiratory treatments (aerosols, MDI, CPT) no more frequent than every 8 hours.
Campers requiring tube feedings should have a stable feeding regimen either with bolus feedings (no more than 5 times per day) or administered by a feeding pump.

Those interested may contact Jamie at 317-679-1860 or admin@champcamp.org.

Clinician Survey

The Society of Mechanical Ventilation is trying to understand clinicians attitude and usage of ventilators during Non Invasive Ventilation (NIV). They are asking clinicians for their help in answering an anonymous six questions survey. The survey takes approximately 1-2 minutes to complete.

ALS Association's Caregiver Education Course

The ALS Association offers a free education course for caregivers of individuals with ALS. Once registered, you’ll find a wealth of information allowing you to access an extensive list of ALS caregiving topics broken down into categories such as Mobility, Communication & Speech, and Psychosocial and Emotional Health. Each module includes detailed, specific lessons related to the topic. In total there are 11 modules with more than 80 individual lessons.

The course allows caregivers to tackle modules and lessons at their own pace and at the time that makes the most sense for them on their caregiving journey. In fact, there is a unique bookmarking feature to allow users to tag topics of particular interest, as well as the ability to add personal notes to lessons for reference and reminders later on.

Take Part in a Healthcare Access Study

The Southwest ADA Center at TIRR Memorial Hermann is conducting a study on the experiences of people with disabilities with the accessibility of their health care. This study is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).

They are looking for US residents (18+) who have experiences with the health care system? They are interested in learning about your experiences through the following survey link:
https://survey.alchemer.com/s3/6943585/Healthcare-Access-Survey

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Recent Pubs

RECENT RELEVANT PUBLICATIONS

Transitioning from hospital to home with non-invasive ventilation: who benefits? Results of a cohort study

Fox BD, Bondarenco M, Shpirer I, Natif N, Perl S.

“In conclusion, in a large cohort of hospitalised patients who survived an acute hypercapnic hospitalisation, transitioning to home NIV may be effective in reducing mortality in selected patients who are younger and suffer from chronic pulmonary disease or obstructive sleep apnoea and who are co-operative with follow-up. There is evidence of potential harm in older patients or those with cardiac failure who are hypercapnic during their index admission.”

BMJ Open Respir Res. 2022 Nov;9(1):e001267. doi:10.1136/bmjresp-2022-001267.

Quality of life in patients with slowly progressive neuromuscular disorders dependent on mechanical ventilation

Delorme M, Reveillere C, Devaux C, et al.

“This cross-sectional study evaluated health-related quality of life (HRQoL) in patients with slowly progressive neuromuscular disorders dependent on mechanical ventilation (MV; ≥16 hours/day). 119 participants, with 9 years (25th–75th percentiles: 4–15 years) of MV dependence, were included. MV was applied via a tracheostomy in 80 participants (67.2%) and non-invasive interfaces in 39 participants (32.8%), including 28 participants (71.8%) with daytime mouthpiece ventilation. HRQoL was rated good or excellent by 81 participants (68.1%), independently from age, diagnosis or respiratory autonomy. On multivariate analysis, time since MV initiation, independence from family member(s), residence in a rural area, ability to go outdoors with MV and tracheostomy were associated with better HRQoL.”

Thorax 2023;78:92-96.

Home mechanical ventilation in slowly progressive neuromuscular disease: challenging perceptions of health-related quality of life

Simonds AK.

“Timely initiation of HMV in NMD saves lives, improves symptoms and physiological measures, reduces hospital admissions and changes the natural history of many conditions. It is therefore an essential component of many evidence-based clinical guidelines. Health-related quality of life (HRQoL) in HMV users has been assessed with increasing sophistication using generic tools such as SF-36 to allow comparison with other chronic disorders and also tools specific to ventilatory support such as the Severe Respiratory Insufficiency Questionnaire.6 Most studies of HRQoL have focused on before and after the introduction of HMV or short-term outcomes over 6–12 months. An exception is Norwegian Long Term Mechanical Ventilation registry study7 which looked at outcomes after a 6-year period of HMV and showed continued improvement in HRQoL in many patients, other than those with chronic obstructive pulmonary disease (COPD). Neuromuscular diagnostic groups were pooled, but it is unlikely those with rapidly progressive disease were included.”

Thorax 2023;78:5-6.

INDUSTRY

Industry

New FDA Notice on Trilogy 100/200 Ventilators

The following notice was issued by the Food & Drug Administration (FDA) on December 22, 2022:

The U.S. Food and Drug Administration (FDA) is providing additional information to patients, caregivers, and health care providers about two recent issues in certain reworked Philips Respironics (Philips) Trilogy 100 and Trilogy 200 ventilators. These Philips Trilogy 100 and Trilogy 200 ventilators were recalled in June 2021 for issues with the polyester-based polyurethane (PE-PUR) sound abatement foam breakdown. The two recent issues are:

The silicone sound abatement foam, installed to replace the PE-PUR foam, may separate from the plastic backing due to adhesive failure. The silicone foam material may potentially move and block the airpath, which may reduce air flow in the ventilator and could also cause the device to alarm. If an alarm is not recognized or acted upon, the patient could experience trouble breathing, such as asphyxia, hypoventilation, or hypoxemia, which can be life threatening. BiPAP and CPAP machines reworked or replaced due to the recall in June 2021 are not affected by this silicone foam adhesion failure. Adhesive is not used to hold the silicone foam in place in the reworked or replaced BiPAP and CPAP machines.
Additionally, Philips observed residual PE‐PUR sound abatement foam in some reworked Trilogy 100 and Trilogy 200 ventilators that were returned to customers. Further exposure to PE-PUR foam may cause potential health risks, which can result in serious injury, cause permanent impairment, and require medical intervention to prevent permanent injury to users. Preliminary results show PE-PUR and environmental debris in some samples.

Philips has temporarily paused reworking the Trilogy 100 and Trilogy 200 ventilators. Philips distributed 13,811 in the U.S. and 7,544 outside of the U.S. reworked Trilogy ventilators impacted by this recall. While the FDA is aware of complaints received from Philips' customers outside of the U.S., the FDA is not aware of any injuries or deaths associated with this recall in the U.S.

Device Description
Trilogy ventilators are used to provide breathing assistance to both pediatric and adult patients. A ventilator is intended to mechanically control or assist patient breathing by delivering a predetermined percentage of oxygen. Trilogy ventilators are intended to be used in homes and health care settings, including when patients may be using a wheelchair or gurney.

Recommendations for People Who Use Recalled Ventilators at Home
Do not stop or change ventilator use until you have talked with your health care provider.

Recommendations for In-Home Caregivers, Health Care Providers, and Health Care Facilities
Consider transitioning ventilator-dependent patients to an alternative life-support ventilator, as determined by clinical assessment.

Review these recommendations with patients who use the recalled ventilators, including that for some patients, stopping use of the ventilator may involve greater risk than continuing to use the recalled ventilator.

Ensure backup monitoring is configured as required by the clinical assessment.

Consider monitoring heart rate, blood pressure, respiratory rate, pulse oximetry measurements, and electrocardiogram readings, which may provide additional advanced warning and lead to faster intervention if breathing problems occur.

Ensure you know how to use these medical devices if they are recommended.

Ensure the ventilator alarm settings are configured appropriately for the patient's need, with special consideration for the alarms listed below.

Ensure alternative ventilation equipment is available, such as a manual resuscitator, as appropriate to the patient's need, in case of emergency issues with alarms that cannot be resolved.

The following alarms could be triggered if the silicone foam separates from the airpath:

Low Inspiratory Pressure
Low Minute Volume
High Temperature
Check Circuit
Low Circuit Leak

If alarms occur, investigate the source of the alarm, including those listed above. If the situation cannot be resolved, exchange for a back‐up ventilator.

Consider using an inline bacterial filter, which may help to filter out pieces of PE-PUR foam. At this time, the information provided by Philips has not established that the filters can reduce the PE-PUR foam's risks. The FDA's evaluation of the information provided by Philips is ongoing. It is important to note the following considerations:

Inline bacterial filters will not help to reduce contact with certain chemicals that may be released from the PE-PUR foam.

Inline bacterial filters may increase the resistance to air flow through the device, which could mean the ventilator will not ventilate adequately.

If a ventilator has an inline bacterial filter, closely monitor for PE-PUR foam pieces collecting on the filter or airflow problems.

Quarantine all impacted ventilators that are removed from service and indicate which serial numbers removed from service need to be exchanged for an alternative device.

Contact Philips Customer Service at 1-800-345-6443 or visit their website at www.usa.philips.com for more information about alternative devices, such as the Trilogy Evo ventilator, or for any other support concerning this issue if needed.

Reporting Problems with Your Device
If you think you have a problem with your device, the FDA encourages you to report the problem through the MedWatch Voluntary Reporting Form or call 1-800-332-1088 for more information on how to mail or fax the form.

Health care personnel employed by facilities that are subject to the FDA's user facility reporting requirements should follow the reporting procedures established by their facilities.

FDA Actions
The FDA is assessing the potential health risks presented by use of the reworked ventilators with the silicone sound abatement foam, reviewing the strategy the company proposes to address the problem, and may take additional actions as appropriate. For more information about the FDA's actions related to the recalled devices in June 2021, see the FAQs on Philips Respironics Ventilator, BiPAP Machine, and CPAP Machine Recalls.

The FDA will keep the public informed if significant new information becomes available.

Questions?
If you need any further information or support concerning this issue, please contact your local Philips representative or Philips Customer Service at 1-800-345-6443 or visit Philips Information for Patients.

Find more information on medical device recalls at What is a Medical Device Recall? | FDA.

For general questions, email the Division of Industry and Consumer Education (DICE) at DICE@fda.hhs.gov or call 800-638-2041 or 301-796-7100.

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IVUN

INTERNATIONAL VENTILATOR USERS NETWORK