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 29, NUMBER 1

FEBRUARY 2015

International Ventilator Users Network (IVUN) has changed its way of delivering Ventilator-Assisted Living (Vol. 29, No. 1). Why? Primarily, we want to make it easier for you to pick what you will read and to pass on the information to others.

 

Who are "you" – the recipients of Ventilator-Assisted Living? IVUN, as self-named, is a network – individuals and independent groups working together towards a common goal – enhancing the lives and independence of ventilator users.  “You” are users of ventilators, families and personal attendants, pulmonologists (respirologists), respiratory therapists, rehabilitation professionals, home care companies, manufacturers of ventilator equipment and accessories and staff of non-profit organizations who provide service to individuals who use mechanical ventilation........MORE

MEGGIN NUNAMAKER

“Life is a buffet and most poor suckers are starving to death.” That is a quote from one of my mother's favorite movies, Auntie Mame. I try to remember it and live my life to the fullest.

 

My name is Meggin. I'm a ventilator user. I give most of the credit of where and how I am today to the strong support system of my family. However, two things have immensely added quality to my life with a ventilator: my Blom trach and the not-for-profit Rockcastle Regional Hospital and Respiratory Care Center..........MORE

Supported by:

Ventilator-Assisted Living

Vol. 29, No. 1, February 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.

 

Changes to Ventilator-Assisted Living and Why

International Ventilator Users Network (IVUN) has changed its way of delivering Ventilator-Assisted Living (Vol. 29, No. 1). Why? Primarily, we want to make it easier for you to pick what you will read and to pass on the information to others.

 

Who are "you" – the recipients of Ventilator-Assisted Living? IVUN, as self-named, is a network – individuals and independent groups working together towards a common goal – enhancing the lives and independence of ventilator users.  “You” are users of ventilators, families and personal attendants, pulmonologists (respirologists), respiratory therapists, rehabilitation professionals, home care companies, manufacturers of ventilator equipment and accessories and staff of non-profit organizations who provide service to individuals who use mechanical ventilation. Traditionally and for obvious reasons, voluntary health organizations focus much of their attention on research and cure. IVUN aims to interact with them to help fulfill their goals of assisting people on ventilators to live with the conditions. 

 

The newsletter is not, as we are sometimes told, “just for vent users,” although we want to more effectively make the voices of ventilator users heard. It is also for health professionals and people in the industry.

 

IVUN’s mission refers to enhancing the lives of home mechanical ventilation users. Over the years, the lines have become blurred. Writing only about those at home ignored the fact that a major part of being a home mechanical ventilation user was getting the opportunity to live at home. Even before that, individuals may or may not be offered the choice of accepting or refusing a ventilator. What information is available to help them make an informed choice? Surveys show that people want to stay in their homes with family and in the community. But, obstacles remain or are looming larger than ever, such as funding for accommodations in the home; funding for attendant care; funding for and access for transportation to live in the community.

 

Who are the healthcare professionals who manage respiratory issues in neuromuscular disease? General pulmonology has typically managed the care, and, as physicians tell us, “Get a reputation and quickly all other physicians in your facility send them to you.”

 

Sleep medicine specialists, familiar with positive pressure devices, should be skilled clinicians in this area, but are often wedded to the sleep lab and may be less familiar with neuromuscular illness. Critical care specialists can be extremely important, since they may initiate ventilatory support--both noninvasive and invasive-- in the ICU and often care for acute illness in home-ventilated patients. And well-informed, skilled respiratory therapists, both in the hospital and in home care, are key players. 

 

Individuals using vents are feeling the sometimes not-so-subtle effects of healthcare reform cost-cutting measures. Medicaid home care hours are being cut with living in a facility many miles from home as the only alternative. Feeling vulnerable, ventilator users keep their eyes on legislatures that write “assisted suicide” laws and on the courts that interpret them.

 

We have networked for 28 years, constantly discussing new ideas and concerns and re-fighting some battles. We would like to hear from you – ventilator users, families, attendants, health professionals (physicians, RTs)From your point of view, what are the most important concerns of ventilator users?  In this short survey we ask you to prioritize a list and give room for adding further comments. Just click on the links below and share the link with others.

 

New IVUN Survey                                       

Priorities of Ventilator Users

 

Priorités aux utilisateurs de ventilateurs

 

Deadline: March 13th.

 

Connecting ventilator users, health professionals and industry.  

Not a fan of surveys? Have something to ask? To share for the next Ventilator-Assisted Living in April, 2015?  A concern? Send your comments to info@ventusers.org.

 

Ventnews.org is the new website for storing Ventilator-Assisted Living. You will always find your newsletter at ventnews.org, as well as past issues organized by date (Volumes 19-28) and by topic (Volumes 9-28). Your favorite resources – Resource Directory for Ventilator-Assisted Living, the Home Ventilator Guide and Take Charge, Not Chances are here, too. Note: The information is still on ventusers.org.

 

Support IVUN
Ventilator-Assisted Living is distributed six times a year – February, April, June, August, October and December. To sponsor an issue or be a supporter of the publications, contact Joan L. Headley at info@ventusers.org for details. 

 

What Adds to Quality of Life? My Story

MEGGIN NUNAMAKER

“Life is a buffet and most poor suckers are starving to death.” That is a quote from one of my mother's favorite movies, Auntie Mame. I try to remember it and live my life to the fullest.

 

My name is Meggin. I'm a ventilator user. I give most of the credit of where and how I am today to the strong support system of my family. However, two things have immensely added quality to my life with a ventilator: my Blom trach and the not-for-profit Rockcastle Regional Hospital and Respiratory Care Center (www.rockcastleregional.org/respiratory).

 

I was born with a muscle myopathy, which is similar to muscular dystrophy. I have weak muscles, poor balance, and coordination, and a short endurance level that fluctuates. The myopathy is progressive, so I continue to get weaker.  With physical therapy, and the support of my family I led a full childhood, even though I couldn't do things like other kids. My parents taught me to find a way to improvise and modify. I could not ride a two-wheel bicycle, so my dad found an adult size three-wheel bike, which I rode all over.

 

In middle school, I was on the swim team, and my coach helped me onto the starting block. In high school, I was involved in everything from prom committee to statistician of the softball team. I always excelled at academics, which led me to Murray State University. I graduated, in 2005, with a bachelor's degree in communication disorders (speech pathology). It took me three years, and six attempts, but I was accepted into the online communication disorders graduate program at Western Kentucky University.

 

Reflecting on my college years, it is evident that my myopathy was progressing. The deterioration was not obvious until after I finished all of the course work for my masters and it was time for my clinicals. Even though I tried, I could not perform the physical demands required of a speech therapist in today's work force. My first clinical was in an elementary school; it had only one floor so I did not have to navigate stairs. I used a mobility scooter in order to keep up with the pace of a large case load. I escorted children to and from therapy and safety of the children in the halls and therapy room became an issue. I did shadowing in nursing homes, and I saw I would have to physically support some patients which I could not do.

 

Since I had already completed the rest of the program (successfully with a 4.0 GPA), I decided to ask my professors for an alternative curriculum, and they agreed with the understanding I would not be licensed as a speech therapist. However, I will never forget the standing ovation or the tears in my family's eyes as I crossed the stage using my walker.  

 

After graduation, I began my job search focusing on one in academia. I sought support from the medical field in order to keep as much physical ability as I could, and began physical therapy. We discovered that my myopathy did not seem to affect my heart but affected my legs as well as my diaphragm, which affected my breathing.

 

I got a part-time job as a tutor for Eastern Kentucky University's Upward Bound program.

 

On March 11, 2012, I was cleaning the kitchen counters in my family home and fell and broke my left leg in three places. Surgeons put in a metal rod and screws in my leg. I was stable and all set to go to a rehabilitation hospital two days later when I went into respiratory distress. I contracted pneumonia in both lungs which further weakened my already weak diaphragm.

 

During the next 20 days in intensive care, I was given a tracheotomy and put on a ventilator. I was then transferred to Cardinal Hill Rehabilitation Hospital in Lexington, Kentucky.  After six weeks there, I was able to be off the ventilator during the day and take a few steps with a walker.  

 

I went to live with my grandmother.  There, I developed a routine that included physical therapy, occupational therapy, breathing exercises, and doing a two-hour “recharge“ on the vent in the afternoon. I could walk about 1,000 feet, and get around the house with my walker, but I could not return to work. 

 

It was about a year after I left the hospital, that a speech pathologist whom I saw for a follow up medical appointment introduced me to the Blom tracheotomy tube system.

 

The Blom tracheotomy tube system (pulmodyne.com) is a trach and cannula tubes that are uniquely designed to allow someone using long-term ventilation to talk. It is not necessary to have your cuff deflated. I keep mine inflated because it is convenient not to have to fiddle with it, and it makes less wear and tear on the trach.

 

I prefer the Blom for two reasons. It is much more comfortable than my former trach, the Shiley. Secondly, the Blom allows me to communicate much like I did before I had a tracheotomy. For me, it is much easier to speak. My friends and family members comment that I sound like my old self and that my personality is back. At times, I have even briefly forgotten that I have a trach.

 

A month later, I started falling more even though I got around the house with a walker. In a six week period, I fell 26 times. It was too much for just one or two caregivers. I needed a safer and better equipped environment. After calling around to local nursing homes for possible admittance, we were referred to Rockcastle Regional Hospital and Respiratory Care Center, in the small Kentucky town of Mt. Vernon.

 

I was hesitant at first because of my ideas of what nursing homes were like from places I had witnessed during my schooling. I imagined being a 31-year old surrounded by elderly with dementia. I also was not thrilled with giving up any of my independence I had left, such as where I go and standing up and walking

 

After being at Rockcastle for a while, I like it and feel safe.  I use the Newport HT 70 at night and during the day whenever I am feeling badly or overly tired.

 

There are residents of all ages with a vast array of conditions, such as muscular dystrophy, stroke and injuries from a car accidents - everyone has a tracheotomy and is on a ventilator. It is like one big family (actually some staff members are related).

 

We are encouraged and assisted to get up and out of our rooms. If not, beds are rolled out to one of the day rooms where ventilator users can visit, watch TV, or just watch people go by.

 

The residents are involved in choosing the activities, which includes day trips for those who can withstand the portable ventilator and being in a wheelchair. We can go anywhere we choose within two or three hours driving distance. The hospital provides a bus that can take one or two ventilator users at a time who are accompanied by a nurse and a respiratory therapist. I've gone on visits home, shopping, movies, festivals, and the Titanic Exhibit.

 

Although pets with shot records can visit, pets can't live in the hospital. I miss my pets, so one of my favorite things to do is go to Pet Smart and play with the kittens.

 

As a resident, I and my family are always involved with any decisions about my health. I serve as president of the resident council made up of resident members and some staff that meet once a month. Anyone can attend the meetings and voice concerns or ideas they have. Problems can also be mentioned to council members privately.

 

My myopathy has progressed.  I am in an electric wheelchair and no longer walk, but

I get physical therapy and work on occupational therapy exercises.

 

Here I can interact with 93 different people, ages 1 to 90, who are facing a similar situation. With the help of the staff, we support and encourage each other. 

 

So as Auntie Mame says, “Life is a buffet and most poor suckers are starving to death.” I have no intention of being a poor sucker.

See a video of Meggin at pulmodyne.com

 

Ventilator Users Speak

Questions from Ventilator Users  

  • I use noninvasive ventilation and have a speaking engagement in March. I haven't been able to find a nasal mask and ventilator configuration that allows me to speak almost without interruption and with some clarity. Suggestions, anyone?
     

  • I would like to connect with a ventilator user who uses the Stellar 150 (ResMed) in the iVAPS (intelligent volume-assured pressure support) mode.  I am familiar with the machine because I use it now in the ST mode.  This question is for an RT. Is the iVAPS on the Stellar similar to the AVAPS (Average Volume Assured Pressure Support) on the Trilogy (Philips Respironics)?  Contact info@ventusers.org for my email. 

 

  • I am looking for a Monaghan 170-C  respirator
     

Respond to info@ventusers.org

 

Comments from PLV-100 Users who had Problems Adjusting to the Trilogy 

  • Thank you so much for connecting me with the respiratory therapist, who has been wonderful! We have talked on numerous occasions and she has guided me to another home health care company which handles LTV 1150 ventilators (Carefusion) I am adjusting to it very well and I owe it all to the two of you. If you had not connected me with her, I might very well have ended up with a tracheostomy, because my home health care company is clueless about post-polio folks.  Note: The LTV 1100 ventilator (Carefusion) has worked well for people who require or are used to volume ventilation.

 

  • The solution for me has proved to be the Astral 150 (ResMed).  I tried it first during the day for an hour and after the third time I was able to use it for 3 ½ hours.  Because it made feel like I did on the PLV-100, I decided to try it during the night, and I have been using it ever since. (I had major problems with the bias flow of the other machines.)  The Astral 150 has its buttons on top of the machine, so once I got in bed I couldn’t see which button to push.  I also can’t move my arms very well, so I needed the machine in a specific position.  Thanks to Chris at Kubak Respiratory Care Services and the ResMed representative out of St. Louis, we came up with an ingenious solution. See photos.

 

Comments on Colonoscopy 

I have been in a wheelchair ever since acute polio. I have scoliosis and I use a BiPAP AVAPS (Philips Respironics) at night and have used noninvasive ventilation for almost 10 years. I did the usual colonoscopy prep and was scheduled for 2 pm, so I was without food or drink going on two days. They had no record of my appointment when I got there, and it was nearly 3:30 pm before we started the procedure. Meanwhile I had a big headache, grew nauseous and sleepy, blood sugar hit 61 and my blood pressure fell.  Finally, they got me on IV and glucose.

 

The anesthesiologist I consulted was not the one doing the job, although they “'talked at length.” The anesthesiologist I got I liked. But she had a different idea to avoid intubation. They went with (I learned only later) propofol and Versed. They also had me on their BiPAP with my settings plus a little oxygen. The first anesthesiologist I consulted did not want to use my BiPAP.

 

I was sent home at 9:00 pm.  After four days, I was still foggy-headed, but I could eat and the headache was gone.  I took me nearly a week to feel “right” again.

 

Comments on Flying while using a Vent 

I never walked again after acute polio. I have used noninvasive ventilation since the mid-eighties. I went to Jamaica for a vacation recently. Again, I was impressed with WestJet. Clearly, they have had some training. They let me carry both vents, the Trilogy 200 (Philips Respironics) and the Stellar 150 (ResMed) on board, asked me if it was an “air” ventilator and did I use oxygen with it. They asked me how it worked and why I used it. When I volunteered the FAA certification papers the flight attendant was pleased and took the papers up to the cabin. Note: See Manufacturers' Certification Letters on IVUN’s website.

 

The electricity in Jamaica is 50 cycle (not 60 as in North America). I was a bit worried about that but the website of Ontario's Ventilator Equipment Pool, the group who supplies my vents (Trilogy and Stellar), indicated 50 - 60 cycles and all worked well.

 

The heat was lovely but intense and on day trips I just kept using and charging the removable Trilogy batteries. I didn’t have to swap batteries during the flight because it was only 4 hours, but it would have worked well, I think.

 

Response from Jeff Marshall, Senior Field Marketing Manager, Philips Respironics, regarding the Trilogy: 

 

  • 50 cycle vs. 60 cycle - Trilogy is designed to run off D/C power. It will automatically convert any power source into D/C. Patients should not have a fear of traveling internationally because the device is designed to match active lives. The only thing they may need is the appropriate plug adaptor for whatever country they are traveling in. Note: Word from a couple of vent users in Europe is that some airlines have been denying all the opportunity to plug-in because the airlines say many users arrive without the appropriate adaptors, etc.
     

  • Flying with Trilogy – If someone forgets the FAA letters (kudos to IVUN for publishing them) they should not panic.  Every device has the below label.  This means that the device has been tested and complies with FAA standards to be used in flight.

 

Educational Opportunities

JIVD/ERCA Conference Next Month 

Join us in Lyon, France, March 26-28, 2015 for the JIVD 14th International Conference on Home Mechanical Ventilation & ERCA 5th European Respiratory Care Association Congress at Cité Centre de Congrès.

 

Conference program - English, French

 

Registration form - English, French

 

Sessions are planned for ventilator users on Friday, March 27th and ventilator users are invited to attend. Free registration is offered.  Joan L. Headley will speak on Saturday, March 28th.  Vent users, families and attendants, and health professionals are invited to prioritize their concerns by completing this brief survey.

 

Priorities of Ventilator Users

 

Priorités aux utilisateurs de ventilateurs

 

Deadline: March 13, 2015

 

Respiratory Conference in Canada this April 

The Canadian Respiratory Conference at the Westin Ottawa, Ottawa, Ontario, Canada opens with a reception on April 23rd, with a full schedule (English and French) on the 24th and 25th. Affiliated meetings are scheduled throughout the conference. One of special interest is Thursday, April 23rd, 0800 – 1600 Noninvasive Airway Management (NIVAM) Workshop: Demystifying Noninvasive Airway Management in Neuromuscular Disease (NMD) and Spinal Cord Injury (SCI) with Drs. Doug McKim (Ottawa), Lisa Wolfe (Chicago) and Sherri Katz (Ottawa).

 

Focus Spring Conference in Florida 

The May 7-9, 2015 Focus Spring Conference will be held at the Coronado Springs Resort and Convention Center in Orlando, Florida.  Review the extensive program and availability of CEUs.  Find out more details or register here.

 

Educational Courses from CHEST 

Professional educational opportunities are available at the CHEST Innovation, Simulation, and Training Center in Glenview, Illinois.  On June 12-13 (Friday, Saturday), a course, Celebration of Pediatric Pulmonology, will be led by Susan L. Millard, MD, FCCP Julie P. Katkin, MD, FCCP. The Interactive Workshops include Ethics, Airway Clearance, Choosing Wisely and Mechanical Ventilation (Noninvasive and Invasive).  To view the 2015 courses, download the 2015 Live Learning Brochure.

 

Recent Relevant Publications

The Value of Respiratory Muscle Testing in Children With Neuromuscular Disease 

Chest, 2015; 147(2):552-559

Brigitte Fauroux, MD, PhD; Susana Quijano-Roy, MD, PhD; Isabelle Desguerre, MD, PhD; Sonia Khirani, PhD (France)

 

“Monitoring respiratory muscles in children with NMD may improve understanding of the natural history of NMD and the evaluation of disease severity. It may assist and guide clinical management and it may help the identification and selection of optimal end points, as well as the most informative parameters and patients for clinical trials.”

Link to article.

 

Anatomy and Neurophysiology of Cough: CHEST Guideline and Expert Panel Report 

Chest, 2014;146(6):1633-1648

Canning BJ, Chang AB, Bolser DC, et al.

Link to article.

 

ALS patients too often miss out on end-of-life care, Health Quality Ontario report says 

Toronto Star, Dec 17, 2014

Alex Ballingall

President and CEO of Hospice Palliative Care Ontario said ventilators and bipap machines are considered devices that ‘prolong life,’ making them inconsistent with the tenets of end-of-life care….

Vice president of client services with ALS Canada said bipap machines shouldn’t be considered life-sustaining devices. She said the machines merely “assist breathing” — they don’t breathe for the patient.

Link to article.

 

Prevalence of Duchenne and Becker Muscular Dystrophies in the United States 

Pediatrics, February 16, 2015

Paul A. Romitti, et. al. on behalf of the MD STARnet

Public health researchers report the freqency of two muscle-weakness disorders that strike mostly boys: Duchenne muscular dystrophy and Becker muscular dystrophy. The team found that about 1 in 5,000 boys in the United States, between 5 and 9 years old, have the inherited disorders. They also find that the diseases appear to affect Hispanic boys more often than white or African-American boys, for unknown reasons. 

Link to article.

 

Planning for Emergencies 

Rancho Los Amigos Support Group Newsletter, December 2014

Richard Daggett, with Mary Atwood

Link to article.   

 

Service Animals and Emotional Support Animals:

Where are they allowed and under what conditions? 

ADA National Network, Fall 2014

Jacquie Brennan, Vinh Nguyen (Ed.)

A brief guide providing an overview of US federal civil rights governing the use of assistance animals by people with disabilities.

Download a copy.

 

Advocacy

ABLE Act: Achieving a Better Life Experience 

On December 19, 2014, President Barack Obama signed into law the Achieving Better Life Expectancy (ABLE) Act. The ABLE Act will allow 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 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.

 

The regulations to be written in 2015 by the Treasury Department will have to explain further the standard of proof and required medical documentation. You need not be under the age of 26 to be eligible for an ABLE account. You could be over the age of 26, but must have the documentation of disability that indicates age of onset before the age of 26.

 

The National Disability Institute has provided a summary and Ten Things You Must Know About ABLE Accounts.

 

Caregiver Wages 

US District Judge Richard Leon ruled that the U.S. Department of Labor overstepped its authority when it moved to mandate pay protections for caregivers requiring that in-home care workers assisting people with disabilities be paid minimum wage and overtime. He stated, “Congress is the appropriate forum in which to debate and weigh the competing financial interests in this very complex issue affecting many families.”

 

Under a law dating to back to the 1970s, in-home care workers have been classified much like baby sitters and exempt from many wage protections. The Obama administration sought to mandate that the nation’s 2 million home care workers receive at least the federal minimum of $7.25 per hour and qualify for time-and-a-half for working more than 40 hours per week.

 

Expected positions
Trade groups representing agencies that employ many in-home care workers challenged the new requirements.

 

Paraprofessional Healthcare Institute, which represents in-home care workers, was “deeply disturbed” by the ruling and said that “America’s 2 million home care workers should not have to wait any longer for fair pay.”

 

Divided disability opinions

ADAPT has long-criticized the wage regulations concerned that without additional Medicaid funding to pay for the higher wages fewer attendants could be hired and individuals with disabilities losing attendants would be forced into institutions.

 

Others support the increase in pay because it is deserved and it would expand the pool of available workers.

 

Following the ruling, the Labor Department said it stands by the regulations and is considering all of its legal options.

 

Industry

CareFusion Will Distribute the Breas Vivo Line in the US 

CareFusion will be the exclusive US distributor for the Vivo by Breas® line of life support and bi-level ventilators from Breas Medical, including the Vivo 50, Vivo 40 and Vivo 30.

 

The Vivo product line is designed for home mechanical ventilation and complements CareFusion's other ventilator products such as the AVEA®, VELA®, 3100A and 3100B HFOV, Infant Flow® SiPAP, ReVel® and LTV® Series ventilators.

 

The combination of CareFusion and Breas Medical ventilation solutions allows CareFusion to provide a complete range of ventilation products. The distribution agreement may be expanded with additional products and territories in the future. 

 

Breas and its affiliates offer a broad range of patient-focused respiratory devices includingVivo™, Z1™, Z1Auto™, Nippy®, Clearway, and iSLEEP™ brands.  Products are sold in over 40 countries.  Breas Medical is a PBM Capital Group portfolio company and was acquired from GE Healthcare in February 2014. 

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IVUN

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