IVUN

INTERNATIONAL VENTILATOR USERS NETWORK

 

an affiliate of Post-Polio Health International

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VENTILATOR USERS,

HEALTH PROFESSIONALS,

AND INDUSTRY

VENTILATOR-ASSISTED LIVING

VOLUME 29, NUMBER 4

AUGUST 2015

JOANNE KOCOUREK, WORTH, ILLINOIS

Part 2: The Solutions/Resolution and Ventilator-Assisted Living

In "Part 1: Our Family Situation/Experience" Kocourek relived the family’s journey of finding diagnoses for daughters Kristen and Annalies. Part 2 chronicles the quest for breathing assistance for both daughters, now young adults.

 

The physiology of breathing is extremely complex, but briefly, hypoventilation results when inadequate breathing causes impaired gas exchange in the lungs resulting in carbon dioxide accumulation. It is important to understand that hypoventilation is diagnosed by carbon dioxide retention measured as high levels of carbon dioxide in the blood.......MORE

Supported by:

Ventilator-Assisted Living

Vol. 29, No. 4, August 2015

Editor: Joan L. Headley

Designer: Brian Tiburzi

ISSN 1066-534X

© 2015 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.

 

Caring for Children with Rare Diseases: "NORMAL" is What You Make It

JOANNE KOCOUREK, WORTH, ILLINOIS

Part 2: The Solutions/Resolutions and Ventilator-Assisted Living

In "Part 1: Our Family Situation/Experience" Kocourek relived the family’s journey of finding diagnoses for daughters Kristen and Annalies. Part 2 chronicles the quest for breathing assistance for both daughters, now young adults.

This article will focus primarily on the methods our family selected, with physician support, to treat our children (now young adults).

 

The physiology of breathing is extremely complex, but briefly, hypoventilation results when inadequate breathing causes impaired gas exchange in the lungs resulting in carbon dioxide accumulation. It is important to understand that hypoventilation is diagnosed by carbon dioxide retention measured as high levels of carbon dioxide in the blood.

Kristen, left, and Annalies

In our daughters diagnosed with Congenital Central Hypoventilation Syndrome (CCHS), the automatic control of breathing is completely absent, and the body fails to respond when carbon dioxide begins to accumulate. Their medical picture is somewhat “muddy” as they also have an inborn error of metabolism called Mitochondrial Cytopathy, a neuromuscular disease under the Muscular Dystrophy umbrella which can, also, cause impaired control of breathing. At times their brains do not tell the body to breathe adequately and/or the muscles required to breathe effectively become weak to the point they require assistance to breathe. Generally speaking, almost all individuals with CCHS will use a ventilator at some point in their care. 

 

Various interventions and equipment used to improve respiratory function have been developed to prevent complications and improve quality of life. However, lack of research and education, lack of awareness of best practices on this topic, conflicting opinions, and country and statewide variations in access to respiratory care have created barriers to quality care.

 

After thoroughly researching ventilatory support options and discussion with our daughters' case managing physicians, we opted to trial several very atypical forms of noninvasive ventilatory support. Invasive ventilation may be required for some individuals but will not be discussed as we have been successful in supporting our daughters noninvasively.

 

Kristen’s Story
Kristen was diagnosed with CCHS at the age of 2. Prior to diagnosis she required supplemental oxygen and AMBU bag resuscitation frequently. We tried caffeine, which has been beneficial for a small number of children, but was ineffective for Kristen. We trialed BiPAP® with a variety of interfaces which failed miserably and was not tolerated overall. We gave consideration to trialing a rocking bed, but the medical team was unable to locate one for use in pediatrics.

 

Ultimately we determined that Kristen could be adequately ventilated using a Porta-Lung with an NEV-100 (Philips Respironics) ventilator. If you’re old enough to remember the polio epidemics, you probably remember the term iron lung. The iron lung and Porta-Lung use a type of ventilation known as negative pressure. For inspiration the machine created a vacuum around the patient, who was encased in a metal tube (iron lung), pulling air into the lungs. The vacuum was released to allow the patient to exhale.

Porta-Lung worked while Kristen was at home but as she attended school she had trouble breathing during the early afternoon.

Kristen with Hayek Oscillator and chest cuirass.

Another negative pressure device that is much more portable is the chest cuirass, a plastic shell that goes around the body and can be worn while working, studying or sleeping. Kristen used both and referred to the Porta-Lung as her spaceship and the chest cuirass as her turtle shell. [Note: Kristen has continued to require supplemental oxygen during sleep and intermittently during the day. No physician is certain as to “why,” but based on testing they believe she has something extremely rare called an Alveolar–arterial gradient (A-a gradient) a mixing of oxygenated and unoxygenated blood.]

 

The Porta-Lung worked extremely well while Kristen was at home. Unfortunately, as Kristen grew and started attending school, she became symptomatic during the early afternoon. Once again, options were explored. Given she was thriving using a negative pressure ventilator, we trialed the original Hayek Oscillator with a chest cuirass. Kristen wasn’t as comfortable with that system throughout the night, but was very accepting of it during the afternoon, including a breathing break for two hours each afternoon while at school. 

 

Several years later, the original Hayek system failed and we were not able to get it repaired in the US, and it  was cost prohibitive to ship the 125 pound unit to and from Europe. Her pulmonologist and I tried to figure out a way to continue to use the chest cuirass with another ventilator. Walking through a Home Depot I spotted tubing that looked similar to what we were using to interface the cuirass to the Hayek and purchased an appropriate length. Fortunately, it was a perfect fit it connecting the chest cuirass to the NEV 100. 

 

The physician worked with the sleep lab staff during the day and determined what parameters where required to effectively provide ventilatory support using the combination of the Hayek cuirass with the NEV-100. It was definitely off -label use of the ventilator and cuirass.

As Kristen grew, and desired the ability to participate in preteen and teenage activities, we were confronted with identifying a system that would travel more easily and afford her comfort and generalized mobility. Simultaneous to this, Respironics announced that they would no longer be servicing or supplying the NEV- 100.

Looking back at the solutions the post-polio patient population utilized, a potential option that became apparent was the pneumobelt. Also known as an exsufflation belt, the pneumobelt consists of a rubber bladder inside a cloth corset that is worn around the abdomen just under the diaphragm. It is connected by a closed circuit to a ventilator that alternately inflates with a prescribed volume of air and then deflates the bladder. As the pneumobelt inflates, it applies pressure up under the diaphragm to force air out of the lungs for exhalation. Then the bladder deflates, lowering the diaphragm, allowing air to rush back into the lungs passively for inhalation.

 

The ventilator settings can be set to provide a smooth, natural inhalation and exhalation, as well as a natural breathing rate for speaking. Until recently, Kristen used the LTV® 950 (CareFusion) to power her pneumobelt. Since the LTV 950 will no longer be supported by the manufacturer she recently changed to the Trilogy (Philips Respironics). Honestly, we appreciate the lighter weight of the Trilogy and the quietness while it is in use.

The LTV 950 is no longer being supported by the manufacturer, so she changed to the Trilogy and appreciates the lighter weight and its quietness while in use. 

Annalies’s Story
When it became apparent that Annalies required ventilatory support, the chest cuirass and pneumobelt were ruled out as options based on body size. These systems ventilate more effectively on those with more rotund abdomens. Annalies was started on BiPAP®. We trialed a variety of interfaces and determined that she tolerated soft nasal pillows best. Aside from compliance challenges, which are difficult to resolve, we experienced two other issues: Annalies would shut the unit off during the night and we had no way to know. Secondly, repeat sleep studies demonstrated that she had a combination of obstructive and central apnea.

Annalies pictured on  BiPAP, which was replaced with the LTV 950, now replaced with the Trilogy that is quiet and delivers a smoother breath.

Basic BiPAP systems work effectively for obstructive sleep apnea and some offer a backup rate. We needed a very reliable system that would alarm if and when she turned the unit off and would consistently sense and ventilate when her central apnea was most marked. The LTV 950 met our needs and we used it until a recent transition to the Trilogy, because the LTV 950 is losing its support. She likes the quietness of the Trilogy and feels that the ventilator delivers a much smoother breath. 

Facilitating Independence
Multi-organ system involvement or abnormalities are quite common in children with both of the diseases affecting our daughters. A review of the medical literature does not report any other children with this combination of rare diseases. The literature does support the need for intensive, skilled home care and monitoring 24 hours a day as child with both disease processes are particularly vulnerable to hypoxia, hypercarbia, cardiac arrest and even death.


These past several years, there have been times that the nursing service has not been able to provide a nurse for the prescribed amount of time due to the national nursing shortage and reimbursement cuts. During those periods my husband and I have had to substitute in addition to the number of hours we already dedicate to their care each day.


It is very difficult to be awake all night monitoring a child then to function at work the next day. It is also very dangerous for Annalies and Kristen to have a sleep-deprived parent monitoring them at night. 

 

Another issue was that because of normal patterns of growth and development, our daughters wanted to participate in young adult activities and attend social activities, dates, school, travel, etc., without a direct chaperone. To bridge the gaps and afford Kristen and Annalies some independence, we explored what other options might be available to assist them. After discussing these concerns with the physicians and multiple parents, we decided that highly trained service dogs would be up to meeting the challenge.


After contacting more than  48 training programs, we found one, Educated Canines Assisting with Disabilities (ECAD), that has successfully trained and placed medical alert service dogs with older children and teenagers that would grant them full public access. 

Annalies with Stitches, right Kristen and Brooklyn.

In November 2002, Kristen was introduced to and matched with Brooklyn. Brooklyn is a beautiful, smart, well trained bundle of fur, energy and talent. Brooklyn and Kristen are now a team. Eighteen months later, Annalies was matched with Stitches. 


Brooklyn and Stitches  bark on hand signal to summon help when their handler can’t communicate, retrieve the telephone to summon paramedic assistance in an emergency, stimulates Kristen or Annalies to breathe when their effort becomes too shallow during awake periods, and “get help” when the ventilator or apnea monitor alarms sound.  


Both dogs can also summon elevators, turn lights on and off, open and close doors, pull a wheelchair short distances and retrieve or carry items. Over time we recognized that these dogs also alert to cardiac arrhythmias, failing cardiac pacemaker lead wires and generators, and alert to impending seizures. They actually alert quicker than any of the electrical monitoring system we have used within our home and faster than the PICU monitoring alarms. 


Neither dog can completely replace home care nursing staff or provide the assessments or interventions that are required, but Brooklyn and Stitch do make life easier for everyone involved with the care needs and life of the girls. Most of all, Brooklyn and Stitch make Kristen’s and Annalies’s lives happier, easier and have greatly improved their self-esteem.


I am thankful that we have found ways to meet their unique needs and overcome many of the stresses of daily living with two medically complex children. We still have moments of panic and fear, but in those times, we each try to remember to breathe, pray, give thanks and relax.  


To my delight, happiness and amazement, I have found our family life and home can overflow with joy in the most unexpected moments. We each feel thankful for situations that otherwise would have disheartened us or stressed us completely. We each are privileged to share our experiences with other parents and individuals walking similar journeys. 

One wise physician told us that every morning when the girls awaken there is hope for the future and another bright day. As their parents we are now taking the risk of slowly letting go. We believe, with their dogs by their sides and a supportive medical team they will handle this responsibility. How far will they go, we honestly don't know. However, it is exciting to be a part of their journey. 

 

Ventilator Users Speak

Facing Surgery/Decreasing Fears  

Mickie McGraw, Ohio 

Over the past ten years, I have faced several surgeries including gall bladder removal, a mastectomy and kidney stone removal. As a person with significant respiratory weakness resulting from polio, I often found I had more concerns about complications related to my breathing than most other aspects of the surgeries. I contracted polio in 1953 and have used some sort of nocturnal ventilation from the outset - I currently use a PLV-100 positive pressure ventilator with an Oracle face mask to sleep.

 

However, with each surgery I gained experience in how to better prepare for the procedure and how to handle my breathing issues related to anesthesia and various other aspects of the surgeries. Following are a few of the things that I have done to minimize complications and maximize my recovery, which I hope will be helpful to others going through similar situations:

INFORM YOURSELF - Talk to your personal physician and the surgeon. Honestly discuss your concerns and questions regarding the procedure. Reach out to friends and peers with similar physical problems, who can offer advice based on their personal experience. Contact post-polio experts and your peers through resources such as Post-Polio Health International and IVUN.

 

Read the current literature on anesthesia risks for post-polio patients, such as the one by Dr. Selma Harrison Calmes, titled "Anesthesia Update: Separating Fact from Fear,” which I found extremely informative. The information gained through all of these sources will help you organize your thoughts and questions. I know from personal experience it helped me a great deal!

 

INFORM YOUR SURGICAL TEAM - Prepare an "info packet" for your surgeon and anesthetist, which includes your post-polio medical history, your respiratory equipment settings, your questions regarding your upcoming surgery and relevant articles on surgical procedures for persons with respiratory issues. Take this packet to your pre-op appointment and on the day of your surgery, to be used if needed. 

 

You often do not get to meet the anesthetist who will be present at your surgery until the day of your operation, so this packet can be very helpful. Since I had all my surgeries at the same medical center, even though different anesthetists did each surgery, they were able to use the information from this packet and the protocols from my previous surgeries, which had become a part of my medical record there.

 

DEVELOP POSITIVE WORKING RELATIONSHIPS - On the day of your surgery, introduce your medical team to the person with you, who knows about your personal care and special needs and will answer questions for you when you can’t. Review the overall surgical plan, especially as it relates to the anesthetic and such things as positioning and transfer to the operating table and extubation after the operation. For instance, as a post-polio patient I have a greater sensitivity to muscle relaxants, so half the usual dose is recommended. 

 

In my case, the anesthetist also used a faster acting anesthetic, so I was able to be awakened more quickly and was extubated in the operating room and put on my ventilator there. Each person's physical and anesthesia needs differ, but there is a great deal of information available to help you and your physician decide on the course that is best for you. 

 

I hope these few suggestions are helpful to others facing surgery, which can understandably evoke real anxiety or fear. I found that, when I took some control and became a part of my own "medical team," I was treated with respect by the physicians involved and felt much more comfortable throughout each experience. The collaborative relationships I developed led to better communication overall and resulted in positive surgical outcomes.

 

Mickie McGraw, MA, BFA, ATR-BC, is an Art Therapy Consultant/Educator/Clinician who co-founded the Art Therapy Studio at MetroHealth, Cleveland, Ohio,  in 1967. The Studio’s mission is to enhance the quality of life for persons with physical, cognitive or emotional challenges through the therapeutic use of art. It is the oldest art therapy program of its kind in the country. Mickie is currently an Honorary Member of the ATS Board, an Adjunct Faculty member of Ursuline College’s art therapy program and is a consultant for Cleveland Clinic’s “Arts and Medicine Program”.  Mickie has an MA in Counseling from John Carroll University and a BFA from the Cleveland Institute of Art, where she majored in graphic design. 

 

Mickie can be contacted at Mimaru79@aol.com

 

Research Funds Available from IVUN

The deadline for submitting an application for a $50,000 research grant from International Ventilator Users Network is October 1, 2015.  

 

Criteria for Applicants

 

  • The research must have the potential to improve the lives of polio survivors or users of home mechanical ventilation. It may be quantitative or qualitative and must follow accepted research methodology.
     

  • Preference will be given to innovative or original research, which leads to new interventions, products, methods or applications. 
     

  • Applicants must be affiliated with an institution or organization. Citizens of all countries may apply. Applications must be submitted in English.
     

  • All requested information must be included. Incomplete or late applications will be disqualified.
     

  • Details are explained in Request for Proposals Guidelines. The Applicant Information (Word) must accompanying the application. 


The Research Fund of Post-Polio Health International including International Ventilator Users Network, established in 1995, was initiated by a generous bequest from polio survivor and ventilator user Thomas Wallace Rogers. Governed by the Board of Directors of Post-Polio Health International, The Research Fund supports the work of researchers investigating the late effects of poliomyelitis and/or neuromuscular respiratory disease.


A listing and reports from prior awards are available on the organization’s websites.

 

Advocacy

Back to School: Understanding Individualized Education Programs 

Individuals with Disabilities Education Act (IDEA) is the US special education law that provides rights and protections to children with disabilities and to their parents. Learning your rights under IDEA can make it easier for your child to get the help he needs (and is legally entitled to) at school. The First Step to Access Services Under IDEA: An Evaluation. The Next Step: Getting an IEP (Individualized Education Program.) 

 

ABLE Act: Achieving a Better Life Experience 

The ABLE Act is rolling out in some states. Signed in to law in December 2014, it allows people with disabilities and their families the opportunity to create a tax-exempt savings account that can be used for maintaining health, independence and quality of life.


The federal act stipulated that an ABLE account may only be opened in the state in which the beneficiary resides, which means all 50 states or contracting states need to implement ABLE. A state can choose to contract with another state and those state residents would be covered under another 529 plan. 


Many groups are working together to assist states in enacting ABLE legislation. The National Down Syndrome Society site is tracking the legislation in each State.


The final version of the ABLE Act limits eligibility to individuals with significant disabilities with an age of onset of disability before turning 26 years of age. If you meet this criteria and are also receiving benefits already under SSI and/or SSDI, you are automatically eligible to establish an ABLE account. If you are not a recipient of SSI and/or SSDI, but still meet the age of onset disability requirement, you would still be eligible to open an ABLE account if you meet SSI criteria regarding significant functional limitations.

 

Steve Gleason Act of 2015 

The Steve Gleason Act of 2015 was signed by President Barak Obama on July 30. The act amends title XVIII of the Social Security Act to provide Medicare beneficiary access to eye tracking accessories for speech generating devices and to remove the rental cap for durable medical equipment under the Medicare Program with respect to speech generating devices.


Steve Gleason is a former New Orleans Saints football player who was diagnosed with ALS in 2011. He and his Team Gleason led a grass-roots effort to persuade Congress and the White House to ensure all Americans have access to eye tracking devices for generating speech. 


Advocates Celebrate and Press On 
The 25th anniversary of the Americans with Disabilities Act was celebrated July 26th. One of the major unresolved issues for people with significant disabilities, including ventilator users, is the continued institutional bias in Medicaid that results in ongoing high levels of unwanted institutionalization.


The Supreme Court's 1999 decision in Olmstead v LC (1999), held that the unnecessary segregation of individuals with disabilities is a violation of the Americans with Disabilities Act of 1990. Under Olmstead, individuals generally have the right to receive their supports and services in home and community-based settings, rather than in institutional settings (nursing homes), if they so choose.  


While there has been progress in rebalancing State spending on individuals with disabilities in institutions as compared to home and community-based settings, more than 75 percent of States continue to spend the majority of their long-term care dollars on nursing homes and other institutional settings. As of June 2013, there were more than 200,000 individuals younger than age 65 in nursing homes—almost 16 percent of the total nursing home population.


In 2014, disability community supporter Tom Harkin (IA) introduced a bill in the Senate that would ensure Medicaid beneficiaries a chance to elect care in a home and community based setting.  


ADAPT is leading the charge for the 2015 version of the bill - Community Integration Act – to be introduced by Senator Schumer (NY). This legislation will require states and insurance providers that pay for Long Term Services and Supports (LTSS) to provide community-based services first and to offer home and community-based services (HCBS) to people currently in institutions. 


ADAPT is a US grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom. Their website features The Community Integration Act – Fact Sheet and a Call to Action


This legislation has broad-based support in the disability community from groups including ADAPT, the National Council on Independent Living, and the Disability Rights Education and Defense Fund.

 

Networking

As part of a comprehensive family support and patient care program, Cure SMA (spinal muscle atrophy) provides information to families regarding their options for invasive or noninvasive ventilation. This includes the Breathing Basics booklet — which can be requested via email at infopack@curesma.org, or downloaded from the support & care publications page — plus information available in the medical issues section of its website, and in the glossary of common terms

 

Cure SMA also makes these same resources available to healthcare providers, so they can understand the options available and help families make a decision regarding breathing support. In addition, Cure SMA funds clinical care research, which deals with issues impacting daily life for those affected by SMA, including breathing issues.
 
Please note that, while they offer general information on the options available, as well as unconditional support in whatever decision you make, they are not equipped to provide individuals or families with personalized advice regarding ventilation decisions. In addition, they have an equipment pool through which they loan medical equipment, free of charge, to SMA families. However, due to the specialized nature of breathing equipment, they do not lend those supplies. 

 

SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein — called survival motor neuron protein or SMN protein — that is critical to the function of the nerves that control our muscles. Without it, those nerve cells cannot properly function and eventually die, leading to debilitating and often fatal muscle weakness.

 

SMA may be referred to as a motor neuron disease or a neuromuscular disease. 

 

Learn more about Cure SMA at www.curesma.org.

 

Recent Relevant Publications

2015-16 Influenza Vaccination Recommendations 

Updated recommendations on influenza vaccination for the 2015–16 season have been issued by the CDC's Advisory Committee on Immunization Practices. As reported in MMWR, changes from the 2014–15 season include the following:

 

  • Trivalent vaccines will include A/California/7/2009 (H1N1)-like virus, an A/Switzerland/9715293/2013 (H3N2)-like virus, and a B/Phuket/3073/2013-like (Yamagata lineage) virus. These A (H3N2) and B viruses are different from the previous season.
     

  • The Fluzone Intradermal Quadrivalent vaccine is expected to replace the trivalent Fluzone Intradermal vaccine for adults aged 18 to 64.
     

  • Children aged 6 months to 8 years who are receiving their first influenza vaccine still need two doses at least 4 weeks apart, but special consideration of influenza A(H1N1)pdm09 vaccination is no longer needed, since current vaccines incorporate that viral antigen.
     

  • Live-attenuated vaccine (previously preferred for children aged 2–8 years) is no longer recommended over inactivated vaccine, because observational studies failed to support the superiority of live-attenuated vaccine seen in randomized trials.


MMWR article (free)

 

From The Lancet Neurology 

"Safety and efficacy of diaphragm pacing in patients with respiratory insufficiency due to amyotrophic lateral sclerosis (DiPALS): a multicentre, open-label, randomised controlled trial."

The Lancet Neurology, September 2015;14(9):883–892.

“Addition of diaphragm pacing to standard care with noninvasive ventilation was associated with decreased survival in patients with ALS. Our results suggest that diaphragmatic pacing should not be used as a routine treatment for patients with ALS in respiratory failure.” Link to article.

   

Pediatric Home Sleep Apnea Testing: Slowly Getting There! 

Hui-Leng Tan; Leila Kheirandish-Gozal; David Gozal, in Chest. Published online August 13, 2015.

“Of note, since most studies have been performed in habitually snoring healthy children, home sleep apnea testing may not be applicable to children with other co-morbid conditions. In particular, CO2 monitoring is important in children in whom there is concern regarding nocturnal hypoventilation, such as children with neuromuscular disease, underlying lung disease or obesity hypoventilation and most home testing devices do not include a transcutaneous or end-tidal CO2 channel.” Link to article.

 

U.S. spinal cord injury rate relatively stable; increase seen in fall-related injuries 

Today in PT, Bonnie Benton

(Citation of source article: Jain NB, Ayers GD, Peterson EN, et al. Traumatic Spinal Cord Injury in the United States, 1993-2012. JAMA. 2015;313(22):2236-2243. doi:10.1001/jama.2015.6250.)

“Most of the SCI cases from 1997 to 2012 were caused by unintentional falls, motor vehicle crashes and firearm injuries, findings showed. The analysis found a significant increase in the proportion of SCI caused by falls, growing from 19.3% in 1997 to 40.4% in 2012. The increase in the percentage of SCI associated with falls was more striking in those 65 and older, growing from 28% in 1997-2000 to 66% in 2010-2012.” Link to article.

 

Educational Opportunities

European Respiratory Society Congress in September 

September 26 - 30, 2015, Amsterdam, Netherlands. Click here for access to the Programme, which will only be available in digital format. 

VENTure eVent in New York 

October 19, 2015, 2nd Annual VENTure eVent: Information Technology and Communication Access for Vent Users in conjunction with the CEWIT2015 Conference, Melville Marriott Long Island, New York. For more information, contact Pam Block (Pamela.Block@stonybrook.edu) at VENTure Think Tank at Stoney Brook

 

FOCUS Fall 2015  

September 28 & 29, 2015Focus Fall 2015, The Desmond Hotel & Convention Center in Albany, New York.

 

October 21 & 22, 2015, Focus Fall 2015, Bally's Hotel & Casino in Las Vegas, Nevada.

CHEST 2015 in Montréal 

October 24 - 28, 2015, CHEST 2015, Montréal, Canada.

SESSIONS OF NOTE

Margaret Pfrommer Memorial Lecture in Long-term Mechanical Ventilation, Monday, October 26, 1:30 pm – 2:30 pm. The 2015 lecture will be presented by John R. Bach, MD, Rutgers New Jersey Medical School, Newark, New Jersey. This award, established in 1999 by Dr. Eveline Faure and Dr. Allen I. Goldberg, honors their lifelong colleague and friend, Margaret Pfrommer, a polio survivor and patient advocate. It is awarded to a clinician or ventilator-dependent professional or advocate who has advanced mechanical ventilation and fostered partnerships between physicians and patients.

CHEST Simulation Center (additional registration) 
Initiating Home-Based Ventilation, Tuesday, October 27, 9:00 am - 10:00 am & 3:15 pm - 4:15 pm; Wednesday, October 28, 9:00 am - 10:00 am.

 

Problem- Based Learning Sessions (additional registration)
Cough Guidelines, Tuesday, October 27, 7:30 am – 8:30 am.
Home Mechanical Ventilation Guideline, Wednesday, October 28, 7:30 am – 8:30 am.

 

GENERAL SESSIONS
Pediatrics/Home Care
Cerebral Palsy: Unique Causes of Pulmonary Disease and Unique Solutions, Monday, October 26, 11:00 am – 12:00 pm.

Transitioning Pediatric Ventilator/Trach Patients to Home, Tuesday, October 27, 4:30 pm – 5:30 pm.

Challenges of Pediatric Home Ventilation, Wednesday, October 28, 11:00 am – 12:15 pm.

 

Home Care
Challenges of Acquiring Durable Medical Equipment in the Home, Monday, October 26, 1:30 pm – 2:30 pm.

Home-Based Mechanical Ventilation: American vs Canadian Experience, Wednesday, October 28, 2:45 am – 4:15 pm.

 

Visit CHEST 2015 Program to review the complete program.

AARC Congress 2015 in Tampa 

November 7 - 10, 2015, American Association for Respiratory Care (AARC) Congress 2015, The 61st International Respiratory Convention & Exhibition, Tampa, Florida.

 

Forrest Bird, inventor of first positive pressure inhalation device, dies at 94

Forrest Bird, MD, PhD, ScD, FAARC, died August 2, 2015 at age of 94 in Slagle, Idaho, home of Percussionaire Corporation, a company he started after selling his Bird Corporation to 3M in 1978.

 

Introduced to flying by his father, Bird became a flyer at age 14. He was fortunate to have interacted with Orville Wright, Henry Ford, Howard Hughes and General George Patton. It was flying in World War II that he started to research respirators because pilots needed equipment to breathe at higher altitudes.


In 1946, he invented the first positive pressure inhalation device. In 1955 he released the Bird Mark 7 Respirator, aka Bird Universal Medical Respirator, used extensively in hospitals. The Baby Bird respirator was introduced in 1970 and reduced infant mortality due to respiratory problems significantly. 


The Percussionaire Corporation website acknowledges “…an incredibly unique and influential individual” with this page “dedicated to the history of Dr. Bird’s lifelong innovation and the birth of our devices.” 


His death was noted by The New York Times and he was honored by the American Respiratory Care Association who recognized its “oldest living member.”

 
Dr. Bird was also featured in a 60 Minutes profile in 2007. 

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