IVUN
INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
CONNECTING
VENTILATOR USERS,
HEALTH PROFESSIONALS,
AND INDUSTRY
IVUN
INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
CONNECTING
VENTILATOR USERS,
HEALTH PROFESSIONALS,
AND INDUSTRY
VENTILATOR-ASSISTED LIVING
This issue sponsored by:
VOLUME 30, NUMBER 5
OCTOBER 2016
Nicole Ficarra
Nicole Ficarra wrote her story, “Making the Best Out of Life After a Spinal Cord Injury,” for Ventilator-Assisted Living (Volume 30, Number 3), June 2015, and follows up with her educational and employment experiences.
After graduating from the Henry Viscardi School in 2008, there were a lot of questions about if and how I was going to go to college. Because of my spinal cord injury, I had a trach, a full-time nurse, and used a breathing pacemaker.
I originally wanted to go to the New York Institute of Technology to study advertising, but my parents and I agreed that I should “get my feet wet” and start with a community college..........MORE
Joel Gavriele-Gold, PhD
I love my CPAP. We have been together for more than 20 years. We’ve been to Israel, Greece, Turkey, Bulgaria, Italy, France, England, Germany, and as many US cities. When I first started travelling with “The Machine” (before 9/11) customs would regard me as the mad bomber and ask, “What is this machine for anyway?” Today I can take it just about anywhere and everyone is familiar with it.
My pulmonary physician, Norma Braun, MD, FACP, FCCP, diagnosed me with COPD (Gold Stage 3), from a lifetime of smoking, and with shortness of breath. I also had obstructive sleep apnea, so she prescribed my first CPAP unit, which weighed about 25 pounds............MORE
ADDITIONAL SECTIONS
Ventilator Users Speak
Answer questions; learn from others.
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Advocacy
Educate, discuss, take action.
Networking
Sharing the work of others
Recent Relevant Publications
Summaries, links to selected professional, disability, disease journals and newsletters.
Educational Opportunities
Conferences and webinars for health professionals and ventilator users.
Industry
The business of living with a ventilator.
Supported by:
Ventilator-Assisted Living
Vol. 30, No. 5, October 2016
Editor: Joan L. Headley
Designer: Brian Tiburzi
ISSN 1066-534X
© 2016 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.
Making the Best Out of Life: Education
Nicole Ficarra, Communications Coordinator, Avery Biomedical Devices, Inc., Commack, New York
Nicole Ficarra wrote her story, “Making the Best Out of Life After a Spinal Cord Injury,” for Ventilator-Assisted Living (Volume 30, Number 3), June 2015, and follows up with her educational and employment experiences.
After graduating from the Henry Viscardi School in 2008, there were a lot of questions about if and how I was going to go to college. Because of my spinal cord injury, I had a trach, a full-time nurse, and used a breathing pacemaker.
I originally wanted to go to the New York Institute of Technology to study advertising, but my parents and I agreed that I should “get my feet wet” and start with a community college.
I attended Suffolk County Community College, Brentwood, New York, for 2 ½ years. During that time, I was an orientation team leader, and I graduated in May of 2011 with my Associates Degree in Liberal Arts.
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In September 2011, I applied to my original choice, the New York Institute of Technology, and was accepted with a scholarship. While attending New York Institute of Technology, I participated in two internships. I was the Account Executive for Cohen Children’s Medical Center taking on projects for their different events. The other internship focused on social media.
In May 2014, I graduated with my Bachelor’s Degree in Advertising.
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My goal was to find a full-time position in social media. Wanting more experience to help me reach this goal, I accepted an internship with the Suffolk County Legislature in October. Some of my responsibilities included attending each legislative meeting and posting the results of the meeting on their social media, making flyers and banners, and doing research on past legislation.
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During this time, I was constantly looking for a job and went on many interviews. Exactly one year after graduating, I found the right job.
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Fourteen years earlier, I was implanted with the diaphragmatic pacemaker manufactured by Avery Biomedical Devices, Inc. In October of 2015, I was visited in my home by the president and chief security officer of the company, so they could check my pacer.
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Before they left, I asked if I could give them my resume. About two days later I got a phone call saying they wanted an interview with me, and after the interview, I was hired as their Communication Coordinator.
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As the Communication Coordinator, I am responsible for all of the social media, brochure and advertisement designs, patient profiles and press releases about new staff.
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Since I have been involved with Avery for 15 years, I attend inservice training, speak to potential pacer patients who have spinal cord injuries and with physicians who have not heard of our device or have not performed the surgery.
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Disability services:
“I definitely did my research and contacted the disability services departments of both schools. They were both very helpful with setting up my classes, activities and test taking. Both places did a good job assuring that my classes met on the first level in case of an emergency.
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“I would definitely recommend to other vent users attending school to contact them. They made me feel very accepted by my peers.”
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Nursing care:
“I had a full-time nurse at the well-known Henry Viscardi School. During my college years I had around-the-clock nursing as well. The assistance continues today and is paid for by my father’s insurance.
“Even though I have nurses still to this day, I am a very independent energetic individual who loves to do as much as I can and not let anything stop me.”
Me and My CPAP
Joel Gavriele-Gold, PhD, New York, New York
I love my CPAP. We have been together for more than 20 years. We’ve been to Israel, Greece, Turkey, Bulgaria, Italy, France, England, Germany, and as many US cities. When I first started travelling with “The Machine” (before 9/11) customs would regard me as the mad bomber and ask, “What is this machine for anyway?” Today I can take it just about anywhere and everyone is familiar with it.
My pulmonary physician, Norma Braun, MD, FACP, FCCP, diagnosed me with COPD (Gold Stage 3), from a lifetime of smoking, and with shortness of breath. I also had obstructive sleep apnea, so she prescribed my first CPAP unit, which weighed about 25 pounds.
I hated it. It was huge, cumbersome and took up almost all of any bedside table. It made a great deal of noise and kept me as awake as did my pulmonary issues. I lied and reported that I was using it all the time. I was completely claustrophobic and having the mask on always left me feeling like there was another body lying on top of me and breathing on my face.
Perhaps a year went by of me mildly complaining that I was “still adjusting,” while not adjusting at all, and mostly not even bothering to put the mask on. This was not doing much for my apnea. I resorted to sleeping pills, which was a gigantic mistake. The medication I was on left me eating meals in the middle of the night, which I was not aware of doing in the morning. I was almost to the point of believing a homeless person was sneaking into my apartment every night and raiding the fridge.
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I only stuck with it because I was encouraged by Dr. Braun. Her continued encouragement and warnings kept me trying to get used to it. She often told me, “I can’t guarantee you won’t have a stroke or heart attack if you continue to ignore your health issues and not use the CPAP.”
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Obstructive sleep apnea is a chronic disease that is rising in prevalence in the U.S. Frost & Sullivan estimates that OSA afflicts 29.4 million American men and women, which represents 12 percent of the U.S. adult population.
American Academy of Sleep Medicine
Not using the CPAP left me unaware of how exhausted I really was. One day I hit a car in a parking lot. Too exhausted to do the right thing and leave my information on the windshield of the car I hit – I drove off. Someone had seen me and reported my license plate to the police who came to my house. Aside from being mortified, I had to hire a lawyer and plead guilty to the charge. It was then I decided, hell or high water, I was going to use CPAP regularly.
More than twenty years ago, I was a three pack-a-day smoker and about fifty pounds overweight. I tried everything to quit. Nothing worked. Once I even walked out of the office of a hypnotist and lit up two blocks away. One year I was presenting a paper at Oxford University and on returning home I found myself turning blue upon landing at the airport in New York.
I was rushed to a hospital where I spent a month fighting a lung infection and waiting to determine if I had cancer. Luckily I did not have cancer then (got that later on), but it was then, and only then, that I finally quit smoking for good.
Weight is a significant factor contributing to apnea. It is a two-way street insofar as apnea stimulates appetite when the body is lacking sleep and demanding energy and very frequently sending faulty hunger messages from the brain.
I learned that I not only ate more when I was sleep deprived, but I also eat all the wrong things, ie, sweets and carbs. At the same time, being overweight contributed to the continuance of the apnea. My physician frequently mentioned that weight loss contributes to a reduction of apnea and, for some, eliminates the need for the CPAP - depending on their diagnosis.
After my hospital experience, I joined a hospital weight loss program in an attempt to shed my 50-plus pounds. This was a program in which most of the participants were more than 100 pounds overweight.
Besides the weekly in-person meetings, which were boring and mostly full of statistics that often sounded like gibberish, there were all kinds of online activities, a chat room and testimonials. It was beyond overkill, and I along with a few others, who were “computer naïve,” fell by the wayside.
A year later, the overriding message of the program turned out to be: “You cannot really ever do it on your own … weight loss is a lifetime process. You need the program." This message became the mantra in the last weeks of the program. All but three of us signed up for another year at $2,000 plus. With a 12-pound weight loss after a year of religiously attending meetings, I was left overweight, depressed and desolate.
I turned to Dr. Braun in despair. She checked out the program and was told by the group leaders that I was non-compliant. Nothing could be further from the truth.
She said “OK this is it: Simple, YOU just must do it. Focus on portion control, no dairy or white foods (i.e., bread, pasta, rice, potatoes) and 1,300 calories a day.”
The 1,300 calories became easy quickly. I looked for low-calorie protein foods that would supply surges of energy. Hardboiled egg for breakfast, breadless burger for lunch, 4-6 ounces of any kind of meat, chicken or fish and lots of vegetables (raw or roasted).
It is OK to “cheat” occasionally, and it helps to regard the 1,300 calories as a bank account you can spend any way you like. In less than three months I was down 50 pounds, eating well, sleeping well and exercising. So much for weight loss as a lifetime process you cannot do alone.
As a psychologist and psychoanalyst, I have sent many of my patients for sleep studies, explaining to them that they might have a sleeping disorder, perhaps even, obstructive sleep apnea.
Many, believing that only overweight people suffer from apnea, would say, "But I’m not overweight." I remind them that you don’t have to be overweight to have sleep apnea.
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Adults should sleep 7 or more hours per night on a regular basis to promote optimal health.
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Sleeping less than 7 hours per night on a regular basis is associated with adverse health outcomes, including weight gain and obesity, diabetes, hypertension, heart disease and stroke, depression, and increased risk of death. Sleeping less than 7 hours per night is also associated with impaired immune function, increased pain, impaired performance, increased errors, and greater risk of accidents.
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Sleeping more than 9 hours per night on a regular basis may be appropriate for young adults, individuals recovering from sleep debt, and individuals with illnesses. For others, it is uncertain whether sleeping more than 9 hours per night is associated with health risk.
A Joint Consensus Statement of the American Academy of Sleep Medicine and Sleep Research Society (2015)
Some of my patients dread the sleep study needed to determine if there are sleep issues. They fear they will not be able to “sleep,” but it doesn’t matter if you fall asleep for most of the study. Your body still supplies the information needed to make a determination.
Others can’t imagine adapting to using a mask if they need CPAP. Sometimes it’s necessary to try a few different types of masks and sizes to determine what is really best. A lot depends on one's individual taste, like picking a pillow.
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Some question what will happen to their sex life. More specifically, is there sex after CPAP? There was a period in my life that I decided the CPAP was ruining my sex life. Other CPAP users, both male and female, also complained, but only to each other. We were like a secret organization of frustrated members.
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I feared that if I took anyone home and they saw my CPAP with all that tubing and a mask, not unlike The Man in the Iron Mask, what could they possibly think they were getting into? Is this guy kinky? Is that machine some kind of new sex fetish? I couldn’t just slide it under the bed. It would not fit. I didn’t have an extra bedroom to use either.
I settled down to a quiet life with lots of Netflix. Then sometime later I decided to take advantage of the obvious. I would go to parties and ask if anyone wanted to spend time with a jet fighter pilot. Occasionally, I would get an interested person, and life got better.
Today, I can’t imagine life without my CPAP. It makes any strange bed or location feel familiar. The ritual of setting up the machine, hoping to find distilled water, checking the water level of the humidifier, plugging it in 110/220, being sure to have adaptors for three prong plugs, European/Asian plugs, sometimes even extension cords, and seeing the lights lighting up, are all reassuring.
The mask assures me that I will spend most of the night on my back. If you are afraid your sleep position will leave your neck resting heavily on your chin, it might be a good idea to get a neck brace at the local druggist to provide extra breathing space.
The more we learn about sleep disorders and apnea, the more we realize that when unattended these conditions strongly affect our emotional well-being. Insufficient sleep can lead to anger management issues as well as deep feelings of sadness, and even, melancholy. Symptoms of grief and certain forms of depression may appear, also.
I hope my thoughts may help you to get on track.
Live longer and better, if you need CPAP.
Ventilator Users Speak
Larry Becker, Roanoke, Virginia
Philosopher and academic, Larry was honored recently by a colleague who blogs at How to be a Stoic: an evolving guide to practical Stoicism for the 21st Century.
Massimo Pigliucci, Professor of Philosophy at CUNY-City College, New York, interviewed Larry after reading his book, A New Stoicism. He also viewed Developing a Personal Philosophy about Disability, a video Larry made for Post-Polio Health International’s Polio Place.
Pigliucci writes, in “Stoicism and disability,” about Larry and summarizes his five ideas on developing a personal philosophy about life. The ideas center around: Importance of agency; Focus on abilities, not disabilities; Developing a life plan; Internal harmony; Brick walls.
Audrey King, Toronto, Canada, added her thoughts to Project Value.
This project seeks to explore a different perspective; to share stories and experiences that contradict the narrative that disability is a fate worse than death. Organizers state, “This is about projecting our value.”
Want to participate in ‪#ProjectValue? Contact them through www.facebook.com/projectmyvalue.
Carol Purington, Colrain, Massachusetts
Mann Library featured haiku by Carol Purington.
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Cornell University's Mann Library hosts a Daily Haiku Page, highlighting the work of a different poet each month. Carol Purington (author bio) was the guest author in September 2016.
Advocacy
Frustrating News from CMS
As written about in the June Ventilator-Assisted Living (Volume 30, Number 3), a group of experienced and articulate individuals representing the American Association of Respiratory Care, the American College of Chest Physicians and led the National Association for Medical Direction of Respiratory Car submitted a reconsideration of the current Medicare National Coverage Determination for home ventilators, including bi-level devices to the Centers for Medicare and Medicaid (CMS).
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​After waiting 150 days, CMS responded that they will not move forward on the request for a reconsideration. They stated, “However, due to a large volume of NCD requests at this time, we will not be able to open a reconsideration on NCD 280.1 at this time. As stated in the FR Notice, in the event that we have a large volume of NCD requests for simultaneous review, we prioritize these requests based on the magnitude of the potential impact on the Medicare program and its beneficiaries and staffing resources.”
A timely and eye-opening report, Escalating Medicare Billing for Ventilators Raises Concerns, was issued by the Office of Inspector General (OIG) in September. The next step is to work with Congress to change the legislation.
Information will be forthcoming as to how ventilator users and their families can help with this effort.
Networking
To keep up-to-date on each state’s progress on the ABLE Act, check out the site coordinated by the National Disability Institute. One does not have to set up the account in the state one lives. See Tool that Compares State Programs.
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Also, there are amendments to the act introduced in Congress.
Social Security Matters
Helping Young People with Disabilities Successfully Transition to Adulthood
The transition to adulthood can be challenging, especially for young people with disabilities who come from low-income families and receive Supplemental Security Income (SSI). Social Security is with you through life’s journey, helping you secure today and tomorrow. Part of that commitment is creating a path for children with disabilities that leads to rewarding lives as adults. Check out the new brochure, What You Need to Know About Your Supplemental Security Income (SSI) When You Turn 18.
Interested in an internship?
The Youth in International Development and Foreign Affairs internship program of the United States International Council on Disabilities (USICD) has opened applications for its 2017 summer program. It focuses on youth with disabilities who are interested in international development or foreign affairs careers.
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You must be a person with a disability. There is an age requirement and you must be a U.S. citizen and a graduate student, or a rising college junior or senior, or a recent graduate. Review the application process. It may be for you.
Check out where your PPMD family plans to be in 2017 and mark your calendars!
Recent Relevant Publications
Association Between Overnight Extubations and Outcomes in the Intensive Care Unit
JAMA Intern Med. Published online September 6, 2016.
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Conclusions and Relevance: Approximately one-fifth of patients with MV in US ICUs undergo overnight extubation. These patients have higher rates of ICU and hospital mortality than patients undergoing extubation during the daytime. Further studies are needed to understand why overnight extubation results in poorer outcomes.
CPAP for Prevention of Cardiovascular Events in Obstructive Sleep Apnea
N Engl J Med 2016; 375:919-931, September 8, 2016.
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Conclusions: Therapy with CPAP plus usual care, as compared with usual care alone, did not prevent cardiovascular events in patients with moderate-to-severe obstructive sleep apnea and established cardiovascular disease.
Sleep Apnea May Boost Risk for Post-Op Problems
Certain patients should be checked for the disorder before having surgery, researchers say.
The HOT-HMV trial (Home Oxygen Therapy-Home Mechanical Ventilation) – which involved giving selected patients a breathing machine to be used in their home in addition to oxygen therapy – was found to reduce readmissions to hospital following an acute infection.
Follow-up will continue, as patients are monitored for survival rates over the next three and five years.
The trial was carried out thanks to funding and equipment from manufacturers Philips Respironics (press release) and ResMed (press release) and Guy’s and St Thomas’ Charity.
Articles of interest from Passy-Muir
The latest Talk Muir from Passy-Muir is designated as their In-line Ventilator Application Issue, and includes “Effects of PMV Use In-line on Communication & Swallowing” (p. 10) and “Clinical Hot Top: VAP (Ventilator-Assisted Pneumonia)” (p. 18).
CDC Puts Observational Period in Place for Everyone Receiving the Flu Shot
“In previous years, it’s been advised that people who are allergic to egg should be observed for 30 minutes following vaccination for potential allergic reactions. This recommendation has been removed and now it’s advised that providers should observe all patients, even those without an egg allergy, for 15 minutes afterwards.”
Educational Opportunities
Canadian Respiratory Conference 2017
April 27 - 29, 2017 - Montréal, Québec. More information here. Past conferences.
FOCUS Spring 2017
May 5 - 6, 2017, Friday, Saturday, with additional optional workshops on May 7th, Sunday morning, Rosen Shingle Creek Resort in Orlando, Florida. Watch for details.
Parent Project Muscular Dystrophy 2017 Annual Connect Conference
June 29 to July 2, 2017, Chicago, Illinois. Save the date.
JIVD/ERCA Conference in 2018
First announcement: JIVD (Journées Internationales de Ventilation á Domicile) and ERCA (European Respiratory Care Association) are working on the organization of their third joint meeting that will take place in Lyon, France, March 15 - 17, 2018.
CCHS Family Conference 2018, alongside The 5th International CCHS Conference
June 19-23, 2018 at The Chase Park Plaza, St. Louis, Missouri, USA.
Industry
ResMed Recall
In August, ResMed initiated an Australian recall of its Astral 100 and Astral 150 ventilators, due to internal battery issues.
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The company said it has received reports of an internal electrical issue which led to stopped ventilation without the ‘low battery’ or ‘critically low battery’ alarms activating as intended. ResMed will replace the internal batteries in all the Astral 100 and Astral 150 ventilators in use as part of routine maintenance service.
CHEST 2016
IVUN will be at CHEST 2016 in Los Angeles and will report in the December Ventilator-Assisted Living on new equipment and accessories.