INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
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VOLUME 34, NUMBER 6
Peter C. Gay, MD, MS, FCCP
This year's Margaret Pfrommer Endowed Memorial Lecture in Home-based Mechanical Ventilation was awarded to Peter C. Gay, MD, MS, FCCP, Professor of Medicine, Mayo Clinic, Rochester, Minnesota. The lecture was presented on October 21st at CHEST 2020, held virtually this year. This was the 21st year the lecture was given at the annual meeting of pulmonologists to educate physicians about home mechanical ventilation (HMV).................................................MORE
For those not familiar with Carol Purington by name, she contracted polio in 1955, after coming home sick on her first day of first grade. She was nearly completely paralyzed and bedridden for the next 66 years, reliant on others for care and on machines to replace the reflexive breathing destroyed by polio. After a 2-year stay in Boston-area hospitals - during which time our parents made the old 1826 farmhouse ready for her with upgrades to the heating system and installing a generator that could be powered by a tractor – she returned to our dairy farm in the small town of Colrain, Massachusetts...............................MORE
Educate, discuss, take action
Sharing the work of others
Recent Relevant Publications
Summaries, links to selected professional, disability, disease journals and newsletters
Conferences and webinars for health professionals and ventilator users
The business of living with a ventilator
Vol. 34, No. 6, December 2020
Editor: Brian Tiburzi
Designer: Brian Tiburzi
© 2020 Post-Polio Health International.
Permission to reprint must be obtained from Post-Polio Health International (PHI) at firstname.lastname@example.org.
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Navigating to Home NIV Nirvana: What Would Margaret Do?
The 2020 Margaret Pfrommer Endowed Memorial Lecture in
Home-based Mechanical Ventilation
Peter C. Gay, MD, MS, FCCP
This year's Margaret Pfrommer Endowed Memorial Lecture in Home-based Mechanical Ventilation was awarded to Peter C. Gay, MD, MS, FCCP, Professor of Medicine, Mayo Clinic, Rochester, Minnesota. The lecture was presented on October 21st at CHEST 2020, held virtually this year. This was the 21st year the lecture was given at the annual meeting of pulmonologists to educate physicians about home mechanical ventilation (HMV).
Established in 1999 by Dr. Allen Goldberg and Dr. Eveline Faure, the lecture honors polio survivor and advocate Margaret Pfrommer from Chicago, Illinois. Pfrommer, a quadriplegic from polio, spent part of her life in a nursing home after her mother’s death. This experience compelled her to become an advocate for herself and for all those with significant disabilities. The purpose of the endowment is to honor an individual who possesses superior knowledge of home-based mechanical ventilation and who promotes the health professional/patient partnership.
Dr. Gay's lecture, entitled "Navigating to Home NIV Nirvana: What Would Margaret Do?" provides a historical perspective on home non-invasive ventilation and how it has shaped where we are today while referencing Margaret Pfrommer's legacy. Watch the presentation in it's entirety below.
Past Awardees of the Margaret Pfrommer Endowed Memorial Lecture in Home-based Mechanical Ventilation
Dominique Robert, MD
Colin Sullivan, BScMed, MB, BS, PhD, FRA PhD, FRACP, FAA
Augusta Alba, MD
Joseph Ramsdell, MD, FCCP
Anita Simonds, MD, FRCP
John Downes, MD, FCCP
Barry Make, MD, FCCP
Allen Goldberg, MD, FCCP
Dudley Childress, MD
Joshua Benditt, MD, FCCP
Nicholas Hill, MD, FCCP
Norma Braun, MD, FCCP
Roger Goldstein, MD, FCCP
Judith Fischer, MSLS, and Joan L. Headley, MS
John R. Bach, MD, FCCP
Thomas G. Keens, MD
Audrey J. King, MA
Douglas McKim, MD, FCCP
Howard Panitch, MD, FCCP
Carol Purington, this past autumn on the day her final book of poetry was delivered from the printer's shop.
IVUN Executive Director Brian Tiburzi first contacted me not long after Carol passed away on December 8th of this year. He sent fond words of remembrance and wondered whether our family might write about her life for Ventilator-Assisted Living. We knew in the age of the internet, you could easily find her obituary and read it online (and I heartily encourage you to do that, as it took nearly a full page in our local newspaper to tell her story and has garnered widespread praise for honoring her memory), but we feel IVUN’s newsletter is an appropriate forum to share more of her story.
For those not familiar with Carol Purington by name, she contracted polio in 1955, after coming home sick on her first day of first grade. She was nearly completely paralyzed and bedridden for the next 66 years, reliant on others for care and on machines to replace the reflexive breathing destroyed by polio. After a 2-year stay in Boston-area hospitals – during which time our parents made the old 1826 farmhouse ready for her with upgrades to the heating system and the installation of a generator that could be powered by a tractor – she returned to our dairy farm in the small town of Colrain, Massachusetts.
She and her yellow iron lung moved into the front parlor, and for the next six decades, it was simply “Carol’s room” – where she slept, took her meals, spent her days, and in her early years, tended to her schooling remotely by telephone and intercom connection to the local public schools and community college.
Carol rarely talked about polio or her condition, except as necessary to sort out a health-related issue or explore options for new equipment, and she generally discouraged others from spending much too much time in conversation about it – there were just so many other things to talk about. Though, I’d like to clearly note that the post-polio and ventilator user communities were important to Carol, and she embraced being a member of both. But disability was never her identity – she was a poet.
Carol Purington, as a young girl,1957.
In her 20s, she was introduced to the ancient Japanese style of haiku. Over many decades of diligent work, she became a highly accomplished and internationally-known poet, and her work was recognized with numerous awards. Because she had significant paralysis (from the neck down, with limited mobility in her left arm) and slept in an iron lung (and eventually a PortaLung), she was often at the mercy of others for help – especially in the morning while lying in bed, awake but waiting for the morning routine to formally begin. She would write poems but have to hold them in her head until our mother would come and diligently take dictation on a first draft so that Carol could further work on it later. I believe it was a daily ritual, as for many years it was Carol’s goal to write one good haiku a day (and when she said good, she meant good).
Well-written haiku are often about things in nature, expressing in a very few words nuances that are caught or seen in a single moment. What makes Carol’s mastery of haiku such a compelling accomplishment is that, due to her polio, she didn’t wander in the woods or birdwatch in the garden. Instead, we brought the wide world to her, one story at a time. Often a brother, sister, niece, nephew or friend told the story as a narrated tale of adventure – perhaps about hunting for worms or of the fishing trip itself. Her door was always open, and all were welcomed to sit and visit.
She also drew from her personal encounters with the natural world – kittens placed to cuddle close against her cheek, containers of frog eggs hatching into polliwogs, or tiny striped caterpillars in jars on her windowsill that would soon become chrysalises and then hatch as monarch butterflies. Once, I recall catching a hummingbird that was trapped in the woodshed and holding it close for Carol to hear its tiny, frightened peep before we set it free out her window. Puppies, baby foxes, baby bunnies, baby woodchucks, a miniature pony, a baby calf from the barn, snakes, bird nests, a huge wasp nest that was dead for the winter, honeycomb fresh from the hive, berries still warm from the sun, the smells of the farm wafting through her windows, loads of fresh hay and springtime manure spreading – the list went on for 66 years. All these things Carol absorbed and embodied, and over the decades, came to understand intimately in ways she could distill into compact poems.
There are two pieces of her writing that seem especially fitting for this tribute. First are the words she chose to be inscribed on her cemetery gravestone. Second is a death poem – which according to tradition, is a haiku left by the poet to be shared at the end of her life.
I am a woman of words
Words are light
Making the invisible radiant
Making me buoyant
Her final word -
a window thrown open
to the spring evening
CMS Releases Toolkit on Home- and Community-Based Services
The Centers for Medicare and Medicaid Services released a toolkit in November featuring examples of how states have expanded home- and community-based services and decreased reliance on institutional care.
The 66-page toolkit is designed to provide background information, resources, and promising practices that support state efforts to rebalance Medicaid long-term services and supports (LTSS) in favor of home- and community-based services (HCBS).
CMS says that while rebalancing LTSS systems has been a long-standing priority in Medicaid, COVID-19
has accelerated state interest and efforts in promoting the use of HCBS over institutional services. It believes states have been engaged in strengthening their HCBS programs, improving access to coverage and care, and safeguarding financial stability for HCBS providers
to maintain access to services during the pandemic.
Celebrating 45 Years of IDEA
The Department of Education in November marked the 45th anniversary of the signing of the law now known as the Individuals with Disabilities Education Act (IDEA). The act was signed into law by President Gerald Ford on November 29, 1975 and was meant to accomplish two goals: guaranteeing free appropriate public education to every child, regardless of disability, on an equal basis with all other children; and advancing all Americans' understanding of disability by bringing children with disabilities out of the shadows and into American schools where their gifts and strengths could be recognized.
To mark the occasion they have created a webpage celebrating its 45 years of providing education, supports and services to infants, toddlers, children and youth with disabilities and their families through the IDEA. The site highlights IDEA success stories and contains other related resources.
HUD Announces Millions for Expanding Access To Disability Housing
The U.S. Department of Housing and Urban Development (HUD) announced on December 8th that it is making $86.85 million available to public housing agencies in more than three dozen states in what are known as Mainstream funding vouchers.
The vouchers are tagged for non-elderly individuals with disabilities who have been affected by the coronavirus pandemic. They also announced that they will allocate $54.7 million toward funding the development of more rental housing for people with disabilities and to provide rental assistance.
“The development of new rental housing, and subsidies for residents will expand their options to live with independence within the community in a more integrated environment,” explained Dana Wade, assistant secretary for housing and federal housing commissioner at HUD.
Mental Health Resources from CHEST Foundation
For many, the COVID-19 pandemic has proven to be not just a threat to their physical wellbeing, but also their mental health and wellbeing. Fear and anxiety about potentially contracting the virus can be overwhelming for some. In addition, mitigation strategies such as social distancing can make people feel isolated and lonely, which can further increase stress and anxiety. The CHEST Foundation has put together a short video (below) featuring CHEST President, Stephanie Levine, MD, FCCP, and Megan Carreon, MHA, RRT, sharing best practices for maintaining positive mental health during the COVID-19 pandemic. You may also click on the infographic to the right for more tips on coping with stress and anxiety during this difficult time.
Cure SMA is Offering PPE to its Community
Cure SMA has developed a COVID-19 PPE Package for any household in the US that has an individual diagnosed with spinal muscular atrophy (SMA). Items in the COVID-19 PPE Package include antibacterial wipes, antibacterial hand sanitizer gel, disposable 3-ply masks, disposable gloves, a protective face shield, and travel tissue packs.
Individuals with SMA, or legal guardians of a child with SMA, who are interested in receiving the Cure SMA COVID-19 PPE Package for their household, can click here to request one at no charge. There is a limit of one per household. The Cure SMA website also has a Coronavirus (COVID-19) Information Center that they continually update.
Help with Financial Planning from ep Magazine
Exceptional Parent Magazine has released its annual financial planning issue. The issue offers valuable guidance from Certified Financial Planners, advice from disability advocates, and insightful personal histories to help families ensure a sound financial future for their loved ones with disabilities. Also included are articles that students and adults with disabilities will likely find informative and helpful.
Reducing Ambient Particles Related to Pulmonary Function Testing in COVID-19 Pandemic
“Reductions in ambient particles related to pulmonary function tests (PFTs) can be achieved in laboratories with moderately aggressive ventilation exchanges, suggesting PFTs can be safely conducted during the coronavirus disease 2019 (COVID-19) pandemic at most centers as long as additional precautionary measures are taken to reduce virus transmission, according to study results published in CHEST.”
Pulmonology Advisor. Nov 25, 2020. Full article.
van den Biggelaar RJM, Hazenberg A, Cobben NAM, Gaytant MA, Vermeulen KM, Wijkstra PJ.
A Randomized Trial of Initiation of Chronic Noninvasive Mechanical Ventilation at Home vs In-Hospital in Patients With Neuromuscular Disease and Thoracic Cage Disorder: The Dutch Homerun Trial
“This study investigated the demographic, biochemical, clinical and intervention‐related predictors of short‐ and long‐term mortality in patients requiring non‐invasive positive pressure ventilation for the treatment of acute respiratory failure. Fourteen percent of patients died during hospital stay, while 56% died within 2 years. Older age, NIV use more than 8 days and non‐successful response to NIV were identified as independent predictors for long‐term mortality.”
Chest. 2020 Dec;158(6):2493-2501. doi: 10.1016/j.chest.2020.07.007.
Israelsson-Skogsberg Å, Persson C, Markström A, Hedén L.
Children with home mechanical ventilation-Parents' health-related quality of life, family functioning and sleep
“Sleep quality and the child's HMV mode predicted parental HRQoL and family functioning. The results underscore the importance of evaluating parents' sleep and of being aware that invasive ventilation influences parental HRQoL and family functioning.”
Acta Paediatr. 2020 Sep;109(9):1807-1814. doi: 10.1111/apa.15177.
Sobotka SA, Dholakia A, Berry JG, Brenner M, Graham RJ, Goodman DM, Agrawal RK.
Home nursing for children with home mechanical ventilation in the United States: Key informant perspectives
“A total of 59 respondents represented care of patients from 44 states; 49.2% physicians, 37.3% nurses, 10.2% respiratory therapists, and 3.4% case managers. Nearly all (97%) believed that families should receive more hours during initial home transition, yet less than half (47%) do. The majority (80.7%) thought the presence of other children in the home should influence nursing hours, yet only three (5.3%) reported other children have influence.”
Pediatr Pulmonol. 2020 Dec;55(12):3465-3476. doi: 10.1002/ppul.25078.
JIVD/ERCA Conference in 2021
The 4th International Joint Meeting of the JIVD (Journes Internationales de Ventilation Domicile) and ERCA (European Respiratory Care Association) will be held March 11-13, 2021 at Cité Centre de Congrès, Lyon, France. For more information, go to www.jivd-erca2022.com.
Candian Respiratory Conference
The Canadian Respiratory Conference 2021 will take place virtually April 8-10, 2021. Registration will open in January. Learn more here.
CCHS Network Family Conference 2021
The CCHS Network Family Conference will take place July 6-9, 2021 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. Rooms may be reserved at the Hyatt Regency Newport Beach.
From Philips: What does the future hold for telehealth? Q&A with medical experts
Since the onset of the pandemic, the use of telehealth services has greatly increased. Relaxed rules regarding telehealth have allowed many users of HMV to take advantage of these services to safely meet with their healthcare providers. With the release of new vaccines and the end of the pandemic theoretically in sight, some have started to wonder what the future will hold for telehealth services in a post-COVID world. Philips recently published a discussion with three of its medical leaders about the opportunities and challenges that lie ahead for the long-term adoption of telehealth services. You can read the full discussion here.