IVUN
INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
CONNECTING
VENTILATOR USERS,
HEALTH PROFESSIONALS,
AND INDUSTRY
VENTILATOR-ASSISTED LIVING
VOLUME 36, NUMBER 4
AUGUST 2022
David Ronfeldt
It’s 1949 and I’m eight years old, about to have my first experience with a life-saving respirator/ventilator: waking up encased in an iron lung in a gloomy polio ward at Los Angeles County Hospital amid other wheezing machines — startled, scared, and screaming, my arms turning useless, my familiar family-son school-boy life suddenly gone, and … well, you know what I mean.
I would lie vacantly in that iron lung for the next eight (nine?) months before being moved by ambulance to a rustic airy ward at Rancho Los Amigos in Downey, California, to begin rehab and reentry. I don’t recall how many months I spent there (four? six?), but my breathing and walking slowly recovered enough to leave the iron lung behind, sleep on a bed without mechanical respiration, walk around Rancho’s playful grounds, visit with family, and begin thinking about going home. Which I did, after physical therapy stints for a few months at Kabat-Kaiser Hospital in Santa Monica and then Casa Colina in Chino..............................................MORE
ADDITIONAL SECTIONS
Advocacy
Educate, discuss, take action
Networking
Sharing the work of others
Educational Opportunities
Conferences and webinars for health professionals and ventilator users
Industry
The business of living with a ventilator
Ventilator-Assisted Living
Vol. 36, No. 4, August 2022
Editor: Brian Tiburzi
Designer: Brian Tiburzi
ISSN 1066-534X
© 2022 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.
David Ronfeldt
LIVING LONG, THANKS TO IRON LUNGS, CUIRASSES, AND BIPAPS
It’s 1949 and I’m eight years old, about to have my first experience with a life-saving respirator/ventilator: waking up encased in an iron lung in a gloomy polio ward at Los Angeles County Hospital amid other wheezing machines — startled, scared, and screaming, my arms turning useless, my familiar family-son school-boy life suddenly gone, and … well, you know what I mean.
IRON LUNGS TO ASSURE SURVIVAL
I would lie vacantly in that iron lung for the next eight (nine?) months before being moved by ambulance to a rustic airy ward at Rancho Los Amigos in Downey, California, to begin rehab and reentry. I don’t recall how many months I spent there (four? six?), but my breathing and walking slowly recovered enough to leave the iron lung behind, sleep on a bed without mechanical respiration, walk around Rancho’s playful grounds, visit with family, and begin thinking about going home. Which I did, after physical therapy stints for a few months at Kabat-Kaiser Hospital in Santa Monica and then Casa Colina in Chino.
Polio patients receiving treatment at Rancho Los Amigos, Downey, California, 1952. Courtesy WHO/March of Dimes.
Only a few good and many bad memories remain from those two/three years in that series of otherwise admirable institutions. Especially awful were the daily curare injections and hot-pack treatments that preceded arm and leg exercises at Kabat-Kaiser. For an hour or two, that barbaric curare depressed my breathing, which was already down to a third of normal lung capacity, barely sustained by polio-weakened chest muscles. I complained, but it took weeks before the staff ceased the curare in my case. Treatment there (not to mention its occasional TV coverage) was designed for polios with weak lower bodies, not ones like me with atrophied upper bodies.
Almost as bad a memory came a year or two later, now back home in good old Claremont (thank God!). A pre-teen growth spurt meant my spine began to curve, my torso tilting and twisting. So, a renowned orthopedist in Pasadena wrapped my torso in a plaster cast as a corrective. The problem was, as the cast dried and tightened, it compressed my ability to inhale as the hours went by, resulting in a hasty after-hours drive back to Pasadena for the solution, which consisted of cutting a large rectangular opening in the front of the cast, allowing my chest to pop out and my breathing to re-stabilize. The first time this happened was quite scary. It happened the next several times too, whenever the cast needed changing — a tiring back-and-forth routine (my poor parents!) for a year or two that became less scary but was always distressing. I still wonder whether the doctor could have come up with a better solution.
For the next twenty-five years — all across my Webb prep school, Pomona college, and Stanford grad-school years, and then into my early RAND work years — I never worried about my limited breathing capacity. It remained at about one-third normal, adequate for everyday life. It even kept me going at higher altitudes, such as during camping and hiking trips in California’s High Sierras and multiple trips and stays in Mexico City.
Breathing while sleeping in Mexico City did eventually become problematic, so I scrutinized my normal daytime breathing pattern — hard-exhale, soft-inhale, especially when walking — and figured out how to reverse it after I lay down for a night’s sleep. I developed an exaggerated gasping exercise to sharpen my inhale and soften my exhale. Decades later, I learned that a nosy school-mate in the adjacent bedroom — we were sharing an apartment while doing doctoral-thesis research from 1967-1969 — presumed I was indulging in something else. In fact, my breathing-reversal exercise worked well enough for me to sleep okay night after night thereafter.
RETURNING BRIEFLY TO AN IRON LUNG
Thus, until 1978, I never gave a thought to maybe needing mechanical ventilation again someday. But then, kablam, I suffered two pulmonary collapses, a few months (weeks?) apart. Post-polio syndrome (PPS) had started taking hold, though neither I nor anyone around me knew it at first.
I knew I was having inexplicable spells of heavy-headed drowsiness and wondered what to do. Get some advice? At the time, I was about five years into working as a researcher on US–Latin American and other national-security issues at RAND in Santa Monica (curiously, just across the street from where Kabat-Kaiser had been); and I had chosen Kaiser-Permanente for my medical plan. But I had never visited a Kaiser office, nor signed up for a doctor, much less a medical exam — I just felt it was an option I had in reserve for an emergency. I recall mentioning my drowsy-headedness to a fellow researcher on a terrorism project — he was a psychiatrist, maybe he’d know something medical about my symptoms — but he figured low-sugar might be the cause and suggested orange juice. Respiratory insufficiency never came up.
The first collapse downed me hours after returning from a trip to Mexico City, where my breathing had become problematic. Fortunately, my parents met me at LAX airport (had I phoned ahead?), just as paramedics began giving me oxygen. So, my parents took me to their home in Claremont, and kept an eye on the increasingly worrying signs. When I began talking strange and nodding off, they rushed me to the ER at nearby Pomona Valley Hospital, where I passed out and stopped breathing. I awoke in an ambulance, fitted to a mask and a pneumo bag, with my father, a musician, proving far superior at pacing my breaths than had the ambulance technician.
Destination: Kaiser-Permanente in Fontana, where I was soon intubated, on a hospital ventilator. I don’t recall how many days. But no longer at Mexico City’s altitude, I soon recovered enough to return first to my parent’s home, and next to my own in Manhattan Beach. I suppose I went back to work after a week. It’s all a hazy memory, presumably because, unbeknown to me and those around me, my O2 and CO2 blood-gas levels were surely out of whack, for I still kept wanting to nod off, especially when driving my car.
As I recall, I returned to Kaiser Fontana for a follow-up exam that was supposed to include an arterial blood-gas test. This might have revealed quite a lot. But, after various unsuccessful tries to insert a needle into an elusive artery, the staff demurred and sent me on my way — I seemed functional enough — with advice to find a Kaiser doctor near my home or workplace for further analysis.
Meanwhile, my brother was already calling around to find a pulmonologist who might know about polio and its effects. And he found one, Dr. Edward Oppenheimer – a wonderful physician who became crucial to my longevity – who, to our amazed delight, happened to be at Kaiser Los Angeles.
Dr. Edward "Tony" Oppenheimer, Japan, 2005.
My first meeting with him was easy-going, a general familiarization. He agreed to take me on as a patient. But, as I recall, that first appointment did not involve any tests, nor did it generate any urgency. Because I was good at appearing to be okay? Because when I walked and talked, increasing my respiration, my blood gases would re-normalize? I suppose we were going to schedule a follow-up exam before long. In any case, the key problem was yet to be identified and diagnosed: my body was losing its natural ability to breathe and sleep at the same time.
Early one morning a short time later, I awoke totally disoriented and out of breath, nearly unable to breathe at all. I don’t recall how or who decided what next, but someone came over (my mother from 30 miles away?) and drove me to Kaiser’s ER in Los Angeles. I remember being laid under an oxygen tent, which hardly helped, and then coughing up some hot thin acidic fluid that signaled infection. I figured intubation might be next — and was it ever.
For the next several weeks, I lay intubated in the ICU (excellent attentive staff) while Dr. O attended to my case steadfastly, first to fight the infection, then to seek a solution to my respiratory problems. He knew about polio and now began learning about PPS from colleagues at Rancho. But none of us knew what to do, apart from maybe giving me a trach, the option I dreaded.
Then movement in a new direction came into view: I gather I mentioned to my mother (well, scribbled on a writing pad, since I couldn’t talk) that it felt like I might need an iron lung again. She, I learned years later, insistently passed my remark to Dr. Oppenheimer. And he, to everyone’s amazement, quickly located and ordered one shipped into Kaiser’s ICU.
It worked! Once the intubation was ended, god-awful phlegm suctioned out, and the relic iron lung started up, my recovery progressed rapidly in the ICU. I even got to walk around, take showers, and play chess with a jolly nurse.
But going home with an iron lung to sleep at night didn’t seem practical. So, the good doctor had me ambulanced to Rancho for further assessment. A tracheostomy was still being contemplated; I’d become especially anxious about this whenever I’d see Rancho’s famed Dr. Jacqueline Perry eyeing me or my medical records. But another option was also available at Rancho: fitting me with a small lightweight plastic cuirass (chest shell) attached via hose to a negative-pressure machine that functioned much like an iron lung.
This is Part One of a two-part story. Part Two will appear in the October 2022 issue.
ADVOCACY
Federal Government Releases $36 Million for Disability Housing
According to the U.S. Department of Housing and Urban Development, more than $36 million in what are known as Mainstream Vouchers will be released to 218 public housing agencies in 46 states .
Of the funds, $23 million will go toward 2,391 new vouchers to help people with disabilities leave or avoid institutions or homelessness, officials said.
“It is a right of every person with a disability to live and fully participate in the community and not be relegated to institutional settings or homelessness,” said Secretary of Housing and Urban Development Marcia L. Fudge. “The funding HUD is awarding today will provide communities with additional resources to help people with disabilities exit or avoid institutional settings and exercise their rights to community living.”
Congress Punts On Aid For Struggling Disability Services System
Michelle Diament reports for Disability Scoop: "An ambitious plan to shore up Medicaid home and community-based services nationwide with the largest investment ever in the program has been whittled down to nothing.
"After more than a year of negotiation, President Joe Biden is expected to sign a reconciliation bill tackling climate change and health care costs. The legislation now known as the Inflation Reduction Act is the latest iteration of a what was originally expected to be a much more expansive measure encompassing Biden’s Build Back Better agenda, including $400 billion in spending on home and community-based services." Read the full article.
NETWORKING
New Memoir from Alice Wong
Ventilator user and disability rights activist Alice Wong will release a memoir on September 6th. From her publisher, Penguin Random House: "From the founder and director of the Disability Visibility Project, and the editor of the acclaimed anthology Disability Visibility, a groundbreaking memoir in essays offers a glimpse into an activist’s journey to finding and cultivating community and the continued fight for disability justice.
"Drawing on a collection of original essays, previously published work, conversations, graphics, photos, commissioned art by disabled and Asian American artists, and more, Alice uses her unique talent to share an impressionistic scrapbook of her life as an Asian American disabled activist, community organizer, media maker, and dreamer. From her love of food and pop culture to her unwavering commitment to dismantling systemic ableism, Alice shares her thoughts on creativity, access, power, care, the pandemic, mortality, and the future. As a self-described disabled oracle, Alice traces her origins, tells her story, and creates a space for disabled people to be in conversation with one another and the world."
Wong suffered a collapsed lung in June and won't be able to promote the book as planned. However, a virtual launch will be held on September 14th for by Chicago bookstore Women & Children First, with author and professor Akemi Nishida filling in for Wong. The following day, writer and editor Elsa Sjunneson and poet and activist Leah Lakshmi Piepzna-Samarasinha will hold an online conversation about the book as part of the Seattle Arts and Lectures series.
From ALS Association
Seat elevation in power wheelchairs is an essential tool that helps people living with ALS safely and independently navigate everyday activities. But these mobility devices are expensive and inaccessible to far too many people who could benefit from this technology. We have an opportunity to expand Medicare coverage for seat elevation and we need your help! Click here to tell Medicare that they must cover seat elevation systems.
The U.S. Centers for Medicare & Medicaid Services (CMS) recently opened a review and is accepting public comments about whether to cover power seat elevation systems for Medicare beneficiaries. They need to hear from as many people as possible about the challenges in accessing these devices and the impact seat elevation can make for people living with ALS and their loved ones.
EDUCATIONAL
OPPORTUNITIES
ERS International Congress 2022
The European Respiratory Society (ERS) International Congress will take place in Barcelona, Spain, and online September 4-6, 2022. Register at www.ersnet.org/congress-and-events/congress/.
CHEST 2022
October 16-19, 2022, Nashville, Tennessee. The CHEST 2022 Annual Meeting will take place in person and will offer more than 300 educational sessions, including simulation and interactive learning opportunities.
INDUSTRY
Phillips Respironics Issues New Recall on Some BiPAP Devices
The following notice was issued by the Food & Drug Administration (FDA) on August 29, 2022:
The U.S. Food and Drug Administration (FDA) is alerting patients, caregivers, and health care providers that Philips Respironics (Philips) recalled certain bi-level positive airway pressure (also known as Bilevel PAP, BiPAP, or BPAP) machines that may contain a plastic contaminated with a non-compatible material. If that plastic is in the device motor, it may release certain chemicals of concern called volatile organic compounds (VOCs). The plastic may also cause the machine to fail and stop working suddenly during use.
This recall is not associated with the PE-PUR foam issue impacting certain BiPAP machines recalled in June 2021, described in the Update: Certain Philips Respironics Ventilators, BiPAP Machines, and CPAP Machines Recalled Due to Potential Health Risks: FDA Safety Communication. However, this new recall does apply to some of the devices recalled in June 2021.
Philips distributed 386 affected BiPAP machines in the U.S. between August 6, 2020, and September 1, 2021. On August 26, 2022, Philips sent affected customers, including Durable Medical Equipment (DME) suppliers, an Urgent Medical Device Recall letter. The models, some of which are intended for use only in clinical environments, are listed below; however, only machines with the serial numbers identified in the company’s Urgent Medical Device Recall letter are affected by this recall.
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A-Series BiPAP A30 (Ventilator)
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A-Series BiPAP A40 (Ventilator)
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A-Series BiPAP V30 (Auto Ventilator)
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OmniLab Advanced+
Recommendations for Patients and Caregivers:
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The A-Series BiPAP A30 (Ventilator) and A-Series BiPAP A40 (Ventilator) machines were also included in the June 2021 recall issued by Philips Respironics. If you have an A-Series BiPAP A30 (Ventilator) or A-Series BiPAP A40 (Ventilator) machine:
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No action is needed, if your device was corrected or replaced through the June 2021 recall, as the affected plastic components were also replaced.
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If your device was not already corrected or replaced through the June 2021 recall, register your device on the Philips website if you have not done so already, and talk with your health care provider to decide if the plan for your care and treatment should change as a result of this recall.
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If you have a health issue, including those listed under potential health risks below, or any problem with your device, talk with your health care provider and report the issue or problem through the MedWatch Voluntary Reporting Form.