INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
VOLUME 35, NUMBER 5
Carol J. Gill, PhD
About 30 years ago, I woke up in the middle of the night with my heart racing and an inexplicable rush of anxiety. It happened not once but multiple times. A trip to my doctor revealed alarmingly high blood pressure, and a sleep study confirmed that I was experiencing sleep apnea. A dreaded blood gas test and some pulmonary function measures completed the picture. I was descending into respiratory failure and needed nighttime breathing support. My long relationship with noninvasive mechanical ventilation had begun............MORE
This summer, Philips Respironics issued a major recall on certain BiPAP, CPAP and mechanical ventilator devices due to the breakdown of sound abatement foam used in these devices. Since that time, very little communication has been forthcoming from Philips. See below for what we did find out..................MORE
Educate, discuss, take action
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Recent Relevant Publications
Summaries, links to selected professional, disability, disease journals and newsletters
Conferences and webinars for health professionals and ventilator users
Vol. 35, No. 5, October 2021
Editor: Brian Tiburzi
Designer: Brian Tiburzi
Permission to reprint must be obtained from Post-Polio Health International (PHI) at firstname.lastname@example.org.
Carol J. Gill, PhD
Tales of My Relationship
About 30 years ago, I woke up in the middle of the night with my heart racing and an inexplicable rush of anxiety. It happened not once but multiple times. A trip to my doctor revealed alarmingly high blood pressure, and a sleep study confirmed that I was experiencing sleep apnea. A dreaded blood gas test and some pulmonary function measures completed the picture. I was descending into respiratory failure and needed nighttime breathing support. My long relationship with noninvasive mechanical ventilation had begun.
Carol J. Gill, PhD
This development punctuated my evolving experience of post-polio syndrome. I contracted polio as a child in the mid-1950s, just before the polio vaccine was approved. I ended up in the hospital for nine months. For part of that time, I had a tracheotomy and lived in an iron lung. Ultimately, I was successfully weaned and breathed without assistance for many years. I had received a PhD in psychology, married, moved from Chicago to Los Angeles, and was raising a teenager when I learned that, again, I needed technology to help me breathe.
It was not a complete surprise. I was already dealing with fatigue and muscle weakness. My ability to walk – achieved through years of childhood physical therapy – was becoming increasingly effortful. Following a fall that fractured my ankle, I had started using a wheelchair more and more. But a ventilator? I was shaken by images of being “tied to a machine” and “extraordinary” measures associated with the end of life. Public opinion polls showed that most Americans would rather die than accept such treatment.
Luckily, through various organizations, I had met a vital community of people with neuromuscular conditions, including polio, who had significant life experience in this area. They assured me that using a “vent” was “no big deal” and advised me to see doctors at Rancho Los Amigos, a hospital known for working with ventilator users.
I followed their advice and found a wonderful pulmonary specialist who respectfully educated me regarding my condition and treatment options. He taught me that I needed adequate movement of air in and out of my lungs rather than simply relying on passive oxygen treatment which could dangerously lull my body into believing it was getting sufficient oxygen despite shallow breathing. The doctor suggested that I try a CPAP device at first to see if it would be sufficient to keep my airway open during sleep. It seemed to help a bit but not enough. He then prescribed a PLV-100 ventilator. He patiently collaborated with me to determine the vent settings and nasal mask that would be most comfortable and effective. Long story short: I ended up using the PLV-100 for over 20 years. My fear of mechanical ventilation faded away as I experienced the reliable, comfortable support of that friendly machine.
But my relationship with the PLV-100 was not destined to last forever. New technology emerged and it became hard to find services and parts for my vent. When our son left the nest, my husband and I moved back to Chicago, and I connected with new pulmonary physicians. They preferred ventilators with advanced technology, so I reluctantly retired my friendly old workhorse PLV and took up with a slim, colorfully-lighted LTV 950.
The new ventilator was sleeker, but it did not feel in sync with my breathing in the way I had come to expect from my boxy PLV. My doctor felt that we could achieve the same effect by adjusting the settings, but somehow my experience of the LTV remained different. When I discussed this with other ventilator users, some told me they had had a similar experience. I also talked with respiratory therapists who agreed that the two vents performed differently because of mechanics, i.e., the PLV was piston rather than turbine driven. Given my paltry knowledge of motors, I can’t weigh in on this debate, but I know many persons with neuromuscular conditions have clung to their PLVs for years, exchanging tips on how to get them fixed.
I tried some other vents, but none seemed to fit my needs. Eventually, my doctor switched me to a Trilogy, which was very portable and gave the doctor recorded respiratory data. I soon learned, however, that it would not allow me to stack enough breaths to cough effectively. On my old vent, I could hold air in my lungs between breaths until the lungs felt sufficiently expanded, and then I would cough. I could do this effortlessly throughout the night without having to switch to another device, such as a cough assist machine. In contrast, when the Trilogy sensed resistance in my post-polio chest, it stopped delivering air. Adjustments didn’t help. It felt as though the machine decided it knew better than I did what was right for me. Not only was this frustrating, but I also worried about maintaining good respiratory health without freedom to expand my lungs and clear my airway as needed on my own.
In time, I began to experience another decline in respiratory functioning. Now I was having trouble during the day. I became short of breath and had difficulty doing activities such as eating or brushing my teeth without having to stop and take breaths, sometimes using frog breathing (glossopharyngeal technique). My pulse oximeter readings showed lowered blood oxygen levels. I worried that I was heading toward a tracheotomy. I turned to my old friend, the PLV-100, using it periodically during the day to expand my lungs. My doctor and I discussed the possibility of using a ventilator during the day that could be mounted on my wheelchair and deliver breaths whenever I felt the need.
I agreed to try Breas’s Vivo 45. It was lightweight and easily piggy-backed on my wheelchair. But I was most attracted by its quiet, unobtrusive nature and its responsiveness to my breathing cues. It sat silently behind me, its circuit threaded through a flexible arm that curved around to the front of my chair, ending in a small mouthpiece easily accessible whenever I wished to “sip” a few breaths. It also allowed me to stack my breaths. At last, I had regained the benefits of my old PLV-100 with the added qualities of portability and silence!
But the best was yet to come. Within days of receiving my new vent, I was breathing better. I had less shortness of breath, my stamina improved, and my blood oxygen saturations were higher. I could eat or brush my teeth without having to stop to rest. I felt more motivated to leave home for errands or excursions. I could converse with friends for longer periods of time.
These gains have been stable. I have shared my experience with respiratory therapists, friends who use ventilators, and even with representatives of Breas, the company that distributes my ventilator. Although I realize that others may not necessarily have the same outcome that I have had, I feel a responsibility to reach out and share what happened to me in case it might help someone else. I remember how much I benefitted from other vent users when my ventilator journey began. That’s why I’m writing this article.
I’m pleased to note that my communication with Breas has been positive. I find the company, like their ventilator, is responsive and in sync with the fact that people with respiratory conditions can lead full and valuable lives that are not defined by our medical diagnoses. It’s nice to see that Breas is interested in the experiences, knowledge, and suggestions of the vent user community. In fact, after talking with me, they invited me to be a consultant to help them stay in touch with vent users so our experience can inform production of the technology we need.
Professionally, I teach in the Disability Studies PhD program of the University of Illinois at Chicago. One of the main tenets of that field is that people with disabilities are usually limited more by societal barriers than by their medical status. With adequate support and respect for our choices, life is good. Unfortunately, we are often treated as unfortunate victims of our conditions who need experts to determine what we need. To be over-medicalized in this way interferes with our self-determination. Having a ventilator that responds to our needs, however, facilitates our self-determination and allows us to have full lives. With that kind of support, my friends were right: using a “vent” can be “no big deal.”
My own ventilator journey has been up and down, but I’m in a good place for now. I am grateful to the community of vent users who have generously shared their reassuring peer wisdom. Over these years, I’ve read the International Ventilator Users Network publications, and I am thankful for the chance to contribute my story. I encourage readers to contact me if you have input to share. Email: email@example.com.
Update on Philips Recall
This summer, Philips Respironics issued a major recall on certain BiPAP, CPAP and mechanical ventilator devices due to the breakdown of sound abatement foam used in these devices. Since that time, very little communication has been forthcoming from Philips. They did report in July that they had filed multiple packages of CFR 806 applications for corrections and removals with the FDA in June. They need approval from the FDA before they can move forward sending out repair kits. There is typically an eight-week turnaround on these applications, they claim, but so far that eight-week period has come and gone with no word from the FDA or Philips.
Philips says it is producing roughly 55,000 repair kits per week currently. It would like to increase that to 80,000 per week in the 4th quarter of 2021 but has been hampered by supply constraints. Philips estimates there are 3-4 million devices affected globally, with about half that number in the US.
The FDA, for its part, has given the recall a Class I designation, the most serious type, and has claimed that it is a high priority for them. Please see their Frequently Asked Questions page for more information if you are a user of an affected device.
CHEST has created a handy infographic that covers the basics below.
Biden Administration Proposes $150 Billion for HCBS
As part of its proposed $1.75 trillion reconciliation bill, the Biden administration has included $150 billion for Medicaid home and community-based services to help get people with disabilities off of waiting lists and address issues plaguing the nation’s workforce of direct support professionals.
While significantly lower than the initial promise of $400 billion, the new figure still represents “the most transformative investment in access to home care in 40 years, when these services were first authorized for Medicaid,” the White House said.
The framework also sets aside $1 billion for direct care workforce competitive grants, plus $20 million for hospice and palliative nursing programs. It would also make permanent the Money Follows the Person program. But noticeably missing is any sort of paid leave program, another priority of disability advocates.
Still, it remains to be seen whether the Democrats have the votes to get the reconciliation bill passed.
Survey Finds Disability Service Providers On The Brink
Disability service providers across the nation are in crisis, with a majority reporting that they’re shutting down programs, turning away new referrals and struggling to maintain standards, according to Disability Scoop.
A survey of 449 organizations found that 58% of providers are discontinuing programs or services, 77% are turning away new referrals, 84% are delaying the launch of new offerings and 81% said they are struggling to achieve quality standards. Meanwhile, 40% of providers said they’re seeing higher frequencies of reportable incidents.
Insufficient staffing is at the root of most of the problems providers are experiencing, according to the ANCOR report. The industry has long struggled to attract and retain direct support professionals, but that situation has only gotten worse. Nearly 93% of providers surveyed said that “industries that previously paid comparable wages now pay employees more than my organization can afford to pay” while 86.2% said that the pay for direct support professionals is less than what people can receive from unemployment and other government safety net programs.
Research Study on CCHS and COVID19
CCHS Foundation, along with Dr. Ajay Kasi from the Division of Pediatric Pulmonology at Children’s Healthcare of Atlanta and Emory University, is conducting a voluntary questionnaire research study to learn about the clinical features and outcomes of COVID-19 infection in children and adults with CCHS.
You/your child will be eligible to participate in this study if you/your child has CCHS and tested positive for COVID-19. The information from this study may help the medical community better serve CCHS patients with COVID-19 infection. If you choose to participate in this study, your participation will involve answering a questionnaire (about 5 minutes) to report your experiences with COVID-19. Participation in this study is voluntary.
Please click below to access the survey if you (the individual with CCHS) or your child with CCHS was diagnosed with COVID-19 infection.
From COPD Foundation: What do you wish you knew?
Newly diagnosed with COPD? Here from those who have been living with COPD about some of the things they wish they knew as they were starting out. The post also included links to a number of helpful resources. Join the conversation on COPD360social.
Celebrate Respiratory Care Week
This week is Respiratory Care Week. Driven by the AARC, President Ronald Reagan issued a proclamation on September 18, 1983, declaring the last full week in October as National Respiratory Therapy Week. The proclamation spelled out why this week is so important. “Chronic lung diseases constitute an important health problem in the United States. They afflict nearly 18 million Americans and cause nearly 70,000 deaths each year."
Are you a respiratory therapist? Share your stories and photos that show how your team celebrated and raised awareness in your community by including #RCWEEK21 on your social media posts.
For Kids With Complex Needs, In-Home Care Tough To Find
Jeanne Kuang, Kansas City Star, October 6, 2021
“Every day, Amanda Bisher suctions her three-year-old daughter’s tracheotomy tubes, checks her oxygen levels, adjusts the antennas on an implanted device that controls her diaphragm so she can breathe deeper and hooks her up to a ventilator that sends bursts of air through her airways, breaking up accumulated mucus.
“At least once a week, Bisher calls a nursing agency, hoping they’ve hired someone to help her do the job.” Read the article.
Castro SM, Belda Nacher FJ, Navarro CD, Puig Bernabeu J.
A Bench Evaluation of Eight Home-Care Ventilators
“We bench tested 8 home-care ventilators that are currently available: Monnal T50, EOVE EO-150, Puritan Bennet 560, Weinmann, PrismaVent 50, Trilogy Evo, Astral 150, and Vivo 60 by using an active lung model. These devices were tested under 18 experimental conditions that combined 3 variables: respiratory mechanics, ventilatory mode, and inspiratory muscle effort. The volume delivered, trigger response, pressurization capacity, and synchronization were analyzed.
“Significant differences were observed in the performance among the devices. Decreased inspiratory muscle effort caused changes in the delivered volume, which worsened the response-to-trigger time, pressurization capacity, and synchronization. Increased pressure support favored the development of asynchronies. All the ventilators developed asynchronies under at least 1 set of conditions, but the EOVE and Trilogy Evo ventilators showed the fewest asynchronies during the experimental conditions studied.”
Respiratory Care. 2021 Oct;66(10):1531-1541. doi: 10.4187/respcare.08650
Kalm B, Lai K, Darro N.
Care of children with home mechanical ventilation in the healthcare continuum
“The care of children with invasive home mechanical ventilation (HMV) is challenging and insufficiently described in the literature. Objectives: Our objective regarding this unique and growing population is to describe our institution's pediatric chronic HMV program and discuss our current understanding of best care practices. Methods: In addition to characterizing the clinical landscape of our program, we describe demographics for our roughly 223 current HMV patients with comparisons to available national data. We discuss evidence and expert opinion regarding various elements of care including initiation of HMV, caregiver education, equipment concerns, inpatient care, and longitudinal care.”
Hosp Pract (1995). 2021 Oct 17;1-11. doi: 10.1080/21548331.2021.1988608. Online ahead of print.
Though CHEST 2021 was recently concluded, on-demand sessions are still available for viewing and will remain so until October 1, 2022. For more information, go to https://chestmeeting.chestnet.org/. Plus, you can sign up for updates about CHEST 2022, which will take place next October in Nashville, Tennessee.
JIVD/ERCA Conference in 2022
The 4th International Joint Meeting of the JIVD (Journes Internationales de Ventilation Domicile) and ERCA (European Respiratory Care Association) will be held March 3-5, 2022, at Cité Centre de Congrès, Lyon, France. For more information, go to www.jivd-erca2022.com.
ATS 2022 International Conference
The American Thoracic Society 2022 International Conference will be held May 13-18, 2022, in San Francisco, California. Get more info at https://conference.thoracic.org.
CCHS Network Family Conference 2022
Next year's CCHS Network Family Conference will take place July 19-22, 2022, in Newport Beach, California. Family conferences foster a supportive and collaborative CCHS union between professionals and families, all with the intent of improving outcomes for CCHS patients.