IVUN

INTERNATIONAL VENTILATOR USERS NETWORK

 

an affiliate of Post-Polio Health International

VENTILATOR-ASSISTED LIVING

VOLUME 36, NUMBER 5

OCTOBER 2022

thumbnail_IMG_2400.jpg

David Ronfeldt

Cuirasses — I’d not known about these specialty items before — came in pre-molded shapes and sizes but could be heat-bent and trimmed to tailor-fit a non-standard chest, within limits. Fortunately, after working on a few edges, Rancho’s staff modified one to fit my chest very well. This enabled me to transition from the iron lung to the cuirass almost immediately.

I was then returned to Kaiser’s ICU for a brief period – just to be sure – where Dr. Oppenheimer and I were viewed as something phenomenal for a while – first because of the obsolete iron lung and now the newfangled cuirass, neither of which had ever been seen there before. I was released to my parents’ care within the week. Not long afterwards, I returned to my own home and went back to work on an accommodative part-time schedule (whew, thanks to RAND)......................................................MORE

CONNECTING

VENTILATOR USERS,

HEALTH PROFESSIONALS,

AND INDUSTRY

Ventilator-Assisted Living

Vol. 36, No. 5, October 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

thumbnail_IMG_2400.jpg

CUIRASSES TO KEEP ME GOING

Cuirasses — I’d not known about these specialty items before — came in pre-molded shapes and sizes but could be heat-bent and trimmed to tailor-fit a non-standard chest, within limits. Fortunately, after working on a few edges, Rancho’s staff modified one to fit my chest very well. This enabled me to transition from the iron lung to the cuirass almost immediately.

I was then returned to Kaiser’s ICU for a brief period – just to be sure – where Dr. Oppenheimer and I were viewed as something phenomenal for a while – first because of the obsolete iron lung and now the newfangled cuirass, neither of which had ever been seen there before. I was released to my parents’ care within the week. Not long afterwards, I returned to my own home and went back to work on an accommodative part-time schedule (whew, thanks to RAND).  

That cuirass system, provided by Kaiser (or Rancho?) through LifeCare kept me going for the next fifteen years. It was easy to put on for napping and sleeping at home and was so effective that my 02 and CO2 levels went back to normal. Plus, with the cuirass packed in one box and the machine and hose in another, I could travel ably again around the US, Canada and Mexico. I even returned to Mexico City numerous times (where airport customs agents usually isolated my boxes until I could find them and explain).  

However, in the early 1990s my torso’s shape began to shift, such that by 1994 my cuirass ceased to fit well, resulting in increasingly poor ventilation and awful sleep problems for months. Making matters worse, I was unable to locate a replacement in my size or have a custom cuirass competently molded by an outside vendor. Thus began a distressing unwanted ordeal to switch to mask ventilation and a BiPAP machine in December 1994 — an effort Dr. Oppenheimer had actually begun suggesting months earlier.

 

TRANSITIONING TO A BIPAP

Shifting from a bulky technology that sucked my chest upward to a smaller lighter one that pushed air through my nose may sound like a no-brainer, but it really stressed my brain and my body. Back then, 1994, BiPAPs and nasal masks were still a new technology for home ventilation. The machines were basic and the masks ill-fitting and awkward. Moreover, few doctors and therapists were skilled at providing patients with a BiPAP on the best personal settings and a mask that fit without leaking or hurting.  

I had a terrible time; the shift became a major ordeal. Because the cuirass had become so dysfunctional, I rushed to transition, trying to force the issue during the Christmas/New Year’s break while taking time off from work. But after a couple weeks of uncertain ventilation, mounting sleep deprivation, and erratic progress despite efforts by all parties to give me good advice and set the machine up, including in Kaiser’s pulmonary lab, I retreated back to a poorly-modified cuirass for several months.

Then I renewed my efforts to make the shift, this time using a gradual approach in which I tried to start a night's sleep on the mask, then switch to the cuirass after a few hours for the rest of the night. I also added afternoon catnaps to gain experience adapting to the mask. Eventually, over about a six-week period, I increased the time I could spend on mask ventilation.  

Most importantly, I began experimenting with the BiPAP’s settings on my own, seeking refinements through trial-and-error spread over months. Back then, fortunately for me, my BiPAP had five openly-accessible knobs for adjusting the settings.

Thus I found I needed a higher pressure when asleep than when awake; so I raised the inhalation pressure (IPAP) from its initial 10 (i.e., 10 cm. H2O) to 12 (higher years later). Meanwhile, after trying various breaths-per-minute (BPM) rates, I kept returning to 20-21 BPM, which is what I had used with the cuirass (later I would prefer 19 BPM).

Another knob let me choose the T (machine-timed), S (spontaneous patient-triggered), or S/T (combination) setting. My inhale was too weak to trigger the S, so the choice was between T and S/T. At the time my body preferred T, maybe because I was accustomed to it from my years on the cuirass, but also because on S/T, my every swallow or move triggered an untimely and unsettling blast of air into the mask.
 

Neither the directions that came with the BiPAP nor the therapists told me about the %IPAP knob. Yet, it plays a crucial role in the T and S/T modes by determining the length of time air is pushed into my lungs during the IPAP phase. It took me a while to discover this, and also to find the best setting for me – 40-45%.

 

Gradually, as I got used to the blasted mask and refined the BiPAP settings, I started falling asleep for brief periods with less delay, both at night and for afternoon naps. Another threshold was being crossed — but it took weeks, and I was still not staying asleep for long.

 

Two more adjustments settled matters. My BiPAP was set to an exhalation pressure (EPAP) of 4, a standard choice I’d not questioned. One night I dropped it to 3 and immediately had my first good night's sleep. (I would later drop it to 0.) Another improvement that helped my lungs do what they wanted to do – now that I understood better how to breathe in tune with the machine’s sensitive technology – was to shift from the T to the S/T mode.  

 

These experiences showed me that a change of just one point or step on any setting may make a major difference, for better or worse. This suggests that patients who have difficulty adapting might be well-advised to try experimenting with the settings – and expect that the settings that work best at first may not remain optimal as the process of adaptation advances.

 

Most doctors, therapists and vendors prefer to determine (and lock) the settings. Yet, in my experience, patients may have to take an active role in figuring matters out, even if this means trial-and-error experimentation on one’s own. Dr. Oppenheimer agreed. Thus as 1995 came to a close, I was fully on the BiPAP system — no more iron lungs or chest cuirasses for me.

BIPAPS TO ENABLE LIVING LONG AND WELL

My life has depended on using BiPAPs ever since – at first Respironics’ original BiPAP S/T, a decade or so later the sleek System One S/T with a humidifier, next the AVAPS model, and now the sophisticated Trilogy 100. Initially I had just the one machine by my bed, for napping and sleeping. Today I have an assortment of five machines deployed around my home for all-day use as I roam around – next to my bed, TV sofa, toilet/shower, dining room table, and front-room desk. Just in case, I have four other machines deployed as well – in a travel bag for sitting outside and/or taking car rides, on the front room floor in case I go to ground, plus upstairs and in the garage in case I need to go there. 

Why so many? My condition has gone from requiring only the one bedside machine after 1994, to needing another one or two handy for daytime relief elsewhere at home after a car crash in 2012, to needing progressively more on hand for round-the-clock ventilation after a bad fall in 2017. Normal aging with post-polio syndrome (PPS) might have caused my torso to shift, crumple, and gain belly weight anyway; but the crash and the fall accelerated and worsened these structural shifts — all of which further diminished my breathing ability and required raising the IPAP to 19-21 while increasing the tidal volume (Vt) as well. 

thumbnail_Photo on 8-29-22 at 10.33 AM.jpg

Also, while my legs have always been pretty strong, I was alarmed to find I could not get back up on my feet, and thus reach my BiPAP, after going to ground twice while attending to my ailing kitty-cat pal last year. Both times turned into brief but exhausting breathless struggles as I crawled on my knees to find ways to re-erect myself. Just in case I go to ground again, I now keep my TV-sofa and desktop BiPAPs running all day long, their hoses dangling over the edge. At other spots, I keep the travel bag BiPAP and a backup Trilogy on the floor, ready to fire up, just in case.  

There is lots more I could add about living with ventilators: my thankfulness for my genetic code, for my parents, brother, and sister, for my friends and neighbors, for my education and career, for not only Dr. Oppenheimer but also his hand-picked successor at Kaiser, Dr. Luis Moreta-Sainz, for rapid responses by respiratory therapists Marie Barton and Digna Berry at Kaiser’s vendor Apria, for Diana Guth and her Home Respiratory Care outfit in West Los Angeles where I acquired my best nasal masks and used BiPAPs, for the Rancho Los Amigos Post-Polio Group and its spinoffs, etc. They have all helped keep me going (as have improvements in home delivery services).

 

I could also note personal dreads that stem from my dependence on ventilators, e.g., a power outage that exceeds my home battery-backup capacities; or isolation in a Kaiser ward where I am unable to attract immediate attention if my body or equipment goes wrong. All too much to add here.
 

CODA
But I do have a final observation: polio creates losses. Yet in looking back, I find that after surviving the initial shock in ‘49 and returning home by ‘51, my thoughts and my emotions have rarely dwelled on loss. Instead, they have found comfort and even taken pride and pleasure in coming up with liberating adaptations along the way. My first such sense of liberation, once home at age 10, came from figuring out techniques for putting my shirt on all by myself, without parental help.

My decades of living with ventilators — first the cuirass, then the BiPAPs — figure strongly in this as well. Far from viewing them as lamentable hindrances, I admire them as personal force-multipliers, impressive enablers of what matters most to me: continuing to read and write clear-headedly about theoretical and strategic ideas that matter to me. I hear other long-lived polio survivors, most of whom are not on vents, share this kind of positive outlook in their own ways. Thus, onward we go. 

thumbnail_In iron lung 2.jpg

Part One of this two-part story appeared in the August 2022 issue.

ADVOCACY

 

Election Resources from REV UP

REV UP recently launched their 2022 State Voting Guides made with disabled voters in mind. These guides explain where, when, and how to vote and include important info about accommodations and your rights as a disabled voter!

309921598_134137126040464_2038871784577081687_n.jpg

REV UP stands for “Register! Educate! Vote! Use your Power!” The REV UP Voting Campaign’s mission is to foster civic engagement and protect the voting rights of Americans with disabilities. REV UP focuses on building the power of the disability vote across the country. The REV UP network is made of both grassroots and national organizers that work to advance the Disability Vote. REV UP is a nonpartisan campaign.

 

The REV UP Voting Campaign started in 2016 as an initiative of the American Association of People with Disabilities (AAPD), a cross-disability civil rights organization building the political and economic power of people with disabilities across the country.

October is National Disability Employment Awareness Month

Observed annually in October, National Disability Employment Awareness Month (NDEAM) celebrates the contributions of America’s workers with disabilities past and present and showcases supportive, inclusive employment policies and practices. In recognition of the important role people with disabilities play in a diverse and inclusive American workforce, the theme for NDEAM 2022 “Disability: Part of the Equity Equation.”

 

NETWORKING

Course: Introduction to Assistive Technology

The NIDILRR-funded Rocky Mountain ADA Regional Center published a course, Introduction to Assistive Technology. The seven-module course focuses on understanding what assistive technologies (AT) are, including the types of AT available, their benefits, and how AT meets the needs of people with disabilities. The course includes a quiz, and users receive a certificate of completion upon passing. A free account is required to access this and more than 20 other courses covering an array of topics relating to the Americans with Disabilities Act (ADA).

Input Requested for Caregiving Policy

Every year at least 53 million people provide informal – and usually unpaid – care and support to aging family members and people of all ages with disabilities. The 2022 National Strategy to Support Family Caregivers was created to support  family caregivers of all ages, from youth to grandparents, and regardless of where they live or what caregiving looks like for them and their loved ones.

The strategy was developed jointly by the advisory councils created by the RAISE  Family Caregiving  Act and the Supporting Grandparents Raising Grandchildren Act, with extensive input from the public, including family caregivers and the people they support. It will be updated in response to public comments and will evolve with the caregiving landscape.

Your input is needed! Please submit your comments by November 30, 2022. 

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

 

RECENT RELEVANT PUBLICATIONS

Navigating the latest device supply chain challenge: Mechanical airway clearance

Jeanette Brown, MD, PhD andKarin Provost, DO, PhD

“As the supply of devices is exhausted, we will need to shift to evidence-based manual options. Manual cough augmentation can be done effectively with a bag-valve mask, using breath stacking to achieve maximal lung insufflation, optimizing the length tension relationship of elastic recoil on exhalation to increase peak cough flow (PCF).

This can be done alone but is more effective when combined with manually assisted cough (Bach JR. Chest. 1993;104[5]:1553-62). These interventions require training of the caregivers, using resources such as those found at www.canventottawa.ca.

With continued supply chain instability, manual airway clearance techniques should be considered in patients with less advanced cough impairment (PCF 160-270 L/min), to save the remaining devices for those with PCF”

CHEST Physician. 2022 Aug;17(8). Full article.

Improving Home Ventilator Alarm Use Among Children Requiring Chronic Mechanical Ventilation

Pajor NM, Kaiser ML, Brinker ME, Mullen LA, Schuler CL, Hart CK, Britto MT, Torres-Silva CA, Hysinger EB, Amin RS, Benscoter DT.

“We collected baseline data from May 1 to July 13, 2017 on 130 consecutive patients seen in the pulmonary medicine clinic. We found that 63% of critical ventilator alarms were set. Observation of the process, standardization of workflow, and adaptation of an alarm algorithm led to an increase to 85.7% of critical alarms set. Through revising our algorithm to include an apnea alarm, and maximizing provider engagement, more than 95% of critical ventilator alarms were set, exceeding our goal. We sustained this improvement through January 2021.”

Pediatrics. 2022 Jun 1;149(6):e2021051968. doi: 10.1542/peds.2021-051968.

"The Devices Themselves Aren't the Problem"-Views of Patients and Their Relatives on Medical Technical Aid Supply in Home Mechanical Ventilation: An Explorative Qualitative Study

Ewers M, Lehmann Y.

“(1) The supply of medical technical aids and the instructions on using them is critical for home-mechanically ventilated patients and their relatives. However, limited evidence exists on the needs-based nature of this care. (2) Aim: To gain insights into users' views on this form of care, to identify key challenges, and to derive empirically sound preliminary recommendations for its future design. (3) Methods: An explorative qualitative interview study was performed in Germany. Semi-structured interviews were conducted with home-mechanically ventilated patients and their relatives. Patients were selected through purposive sampling. Interviews were audio-recorded, transcribed, and analysed using a content analysis approach. (3) Results: 27 patients and 9 relatives were interviewed. From their point of view, ventilation-specific equipment is generally reliable and is seen as a belonging of the patient. However, if the patient lacks competence in using the technology or if information or instructions are neglected, ambiguous and unsafe situations easily arise. (4) Conclusions: The present study is one of the first to provide insights into technical aid supply in home-mechanical ventilation from the users' point of view. It highlights the need for continuous professional support and for evidence-based educational strategies that promote safety among the users of technical aids in home care.”

Healthcare (Basel). 2022 Aug 4;10(8):1466. doi: 10.3390/healthcare10081466.

INDUSTRY

 

Reminder: Phillips Respironics Has Issued a Recall on the Following 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.

  • A-Series BiPAP A30 (Ventilator)

  • A-Series BiPAP A40 (Ventilator)

  • A-Series BiPAP V30 (Auto Ventilator)

  • OmniLab Advanced+

 

Recommendations for Patients and Caregivers:

  • 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:

    • No action is needed, if your device was corrected or replaced through the June 2021 recall, as the affected plastic components were also replaced.

    • 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.

  • 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.