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INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
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VENTILATOR-ASSISTED LIVING
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VOLUME 32, NUMBER 4
AUGUST 2018
Patricia Novak
It was back in July 1954, between my sophomore and junior years in high school, that I developed polio. My first symptom, in addition to malaise and fever, was the fact that I could not swallow food. After about seven days at home sick in bed, I was seen by a specialist and transferred immediately to the Contagious Disease Hospital in Toledo, Ohio. I was diagnosed with poliomyelitis and I spent about 10 days there recovering. My swallowing gradually improved. Before long, I was able to eat food again.............MORE
Tara Montague
Okay, now that I got everyone’s attention, I need some help.
My name is Tara and I’m lucky enough to be mom to an amazing almost 21-year-old daughter named Mary. Mary has Spinal Muscular Atrophy Type I and cerebrocostomandibular syndrome. She has had a trach since she was four days old and was using a ventilator full-time by three months...............MORE
ADDITIONAL SECTIONS
Networking
Sharing the work of others
Advocacy
Educate, discuss, take action
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. 32, No. 4, August 2018
Editor: Brian Tiburzi
Designer: Brian Tiburzi
ISSN 1066-534X
© 2018 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.
Adventures in Tube Feeding
Patricia Novak
It was back in July 1954, between my sophomore and junior years in high school, that I developed polio. My first symptom, in addition to malaise and fever, was the fact that I could not swallow food. After about seven days sick at home in bed, I was seen by a specialist and transferred immediately to the Contagious Disease Hospital in Toledo, Ohio. I was diagnosed with poliomyelitis and spent about 10 days there recovering. My swallowing gradually improved. Before long, I was able to eat food again.
Because my fever was gone, I was transferred to the Crippled Children’s Home in Toledo for further recovery. Once there, I received Sister Kenny hot packs and water therapy in a heated pool. My swallowing further strengthened. After about six weeks, I was released so that I could begin my junior year in high school. Since I wasn’t allowed to climb stairs yet, I had to have all my classes on one floor - no elevators then! I had to take a nap when I got home from school and was not allowed any outside activities, such as club activities or dating, during my junior year. I gradually returned to full strength.
I went on to live a full life – school, work, marriage, four children – and was quite healthy. In the mid-1980s, when I was in my mid-40s, I began to develop symptoms of fatigue and found I could no longer do some of the things I had always enjoyed, such as riding a bike. After seeking help from many doctors, none of whom knew what was wrong with me, I finally found a doctor at the University of Toledo Medical College who diagnosed me with post-polio syndrome.
It was about that time that the general public was introduced to the diagnosis of post-polio syndrome. I began to see articles in newspapers, including one about Dr. Lauro Halstead in Washington, DC. A support group was formed in the area, and I joined.
Slowly, my ability to walk declined. In 1992, I made the decision to get a three-wheeled electric scooter. Then, in 1993, I developed a case of bronchitis that I struggled to recover from. This went on for about three months. My internist finally decided there was a problem with my swallowing and had me tested. Sure enough, my swallowing muscles were not working correctly. I was aspirating, and this was causing the bronchitis. I pondered what to do?
At that point, I contacted Post-Polio Health International (PHI) to find out what they would suggest. Joan Headley, the executive director at the time, gave me the name of a speech therapist in Connecticut to contact for advice. He suggested I get a gastrostomy tube. I found a gastroenterologist doctor that was reluctantly willing to perform the surgery and went ahead and had a tube put in. But I had to talk him into it! I knew that was the right thing for me, but he didn’t.
I have never regretted the surgery! My bronchitis went away immediately. My tube has since performed wonderfully. And no more problems with aspiration (so far!). I have a Kimberly-Clark MIC Gastrostomy Feeding Tube - size 20 Fr. I have it changed by a general surgeon locally every three to five months. I feel only a slight twinge as he is pulling out the old tube and inserting the new one, which is done right in his office.
My main diet is via the tube. I use a bottle of Jevity 1 Cal about three times a day – a liquid nutrition formula similar to baby formula, but for adults. It is made by Abbott Labs. I also take a 1/4 C. serving of Egg Beaters with two meals via the tube.
This gives me five extra grams of protein per meal at only 35 calories! I also take 1 C. of water. I am able to eat solid food as long as it is soft and moist. This includes some soft fruits and vegetables. And, of course, ice cream! I cannot eat meat. It is too difficult to swallow. I am very happy with my diet and feel it provides me with excellent nutrition, especially the Jevity 1 Cal. Using the tube is also a sneaky way to take liquid medications that don’t taste good.
At meals, I pour my Jevity formula into a syringe inserted into the end of the tube to do a feeding. It only takes 10 minutes at the most. I sit with my family at the table at mealtime, so I do not feel like an outcast. My family has happily accepted my strange way of eating. They are very accommodating. I have not hidden it from anyone. The first time my 2-year-old granddaughter saw me eating this way, she said, “Grandma is tubing!” So that was it – from then on, we have all called it tubing!
I don't use the tube when I go out to eat. I order soup or other soft food such as fish, and I usually have a dessert. When I travel, I bring a case of the Jevity with me, do a tube feeding in the hotel room, and eat a soft dinner at a restaurant. When I have travelled abroad, I have contacted Abbott Labs ahead of time, and they have sent my supply of formula ahead of me so it would be at my hotel waiting when I got there. They have been very accommodating for me in this way.
The daily maintenance with the tube includes washing the area once a day, using a disposable drain sponge under the disc to catch any discharge, and changing that drain sponge twice a day. This is no big deal for me. Washing the area takes only a couple of minutes, and changing the sponge, one minute. I use a medical tape called 3M Micropore to tape the tube to my body so it does not move around or get in my way!
The supplies I use, such as syringes, tubes, formula, sponges and tape I purchase from a medical supply firm in my area and they deliver things right to my house.
I am not embarrassed about my tube, and I will tell people about it if they ask. I don’t try to hide it, but I don’t broadcast it, either. Because it doesn’t show, only those with whom I am close and who I have chosen to tell actually know about it.
I am grateful that modern technology has invented this device to help me live a healthy and happy life in spite of having had polio. This is probably called a “first generation” tube, and I am sure there are new “generations” that have come after it. But I am satisfied and choose to leave things as they are. “Don’t try to fix what isn’t broken!”
Desperately Seeking Susan . . .
I Mean Circuits!
Tara Montague
Okay, now that I got everyone’s attention, I need some help.
My name is Tara, and I’m lucky enough to be mom to an amazing almost 21-year-old daughter named Mary. Mary has Spinal Muscular Atrophy Type I and cerebrocostomandibular syndrome. She has had a trach since she was four days old and was using a ventilator full-time by three months. When she came home from the hospital with the ventilator, it was a hospital-grade ventilator that required an air compressor in the home to work and had no battery backup. We were thrilled when the T-bird ventilators came out and we could get her mobile. She transitioned over to the Pulmonetics LTV, and we’ve never looked back.
Tara Montague (r) with daughter, Mary.
Mary goes to school full-time with the assistance of her nurses, and she’ll be looking for an over-21 program next year. She’s a huge music fan – Taylor Swift being her absolute favorite. She’s been to all of her concerts since she began touring as a main act. Her dad tries to get her to balance her musical tastes with Blue Oyster Cult and other rock bands, but she still prefers top-40 hits.
In just the past four years, Mary has survived sepsis and a stage 4 decubitus ulcer with an osteomyelitis. She’s a fighter and determined to do everything she wants. While she is 100% dependent on others for all of her care, she makes sure her wishes are known to everyone. While people who don’t know Mary can’t understand how she communicates, those who take the time to get to know her can easily tell what she wants. She has a wicked sense of humor and enjoys hanging with her aunts and cousins when she can.
Now that you know a bit about us, I need to ask for your help. The manufacturer of the ventilator circuits for Pulmonetics, CareFusion, became part of Vyaire and discontinued the manufacture of the 12-foot circuits for the LTVs. Mary cannot be off the ventilator for longer than about five seconds before her oxygen saturation levels begin to drop.
As I’m sure many of you are aware, a lift transfer can take significantly longer than five seconds to complete. The 12-foot circuit allowed us to keep her safe by having her remain on the ventilator through the entire transfer. The six-foot circuit simply doesn’t have enough length to allow for that. We are on our last 12-foot ventilator circuit, and I’m terrified of what may happen when we have to transfer her using a 6-foot circuit. I truly don’t know how this is going to work, but I imagine it’s not going to be safe for her.
I’m hoping and praying that someone out there has some 12-foot circuits that they no longer need, sitting in a storage closet, and that they’re willing to share them with us. I’ve gone to every equipment company I can find but to no avail and posted to every Facebook medical equipment page or group I can find. You are our last hope. Thank you for taking the time to get to know us.
Part information: ISO - CareFusion REF# 18884-001. Wye & Expiratory Limb w/o PEEP, 22mm, SPU, 12'
If you can assist with Tara's request, please contact IVUN at 314-534-0475, info@ventusers.org.
NETWORKING
August was SMA Awareness Month
Cure SMA planned a number of events in August to help raise awareness of SMA, including candlelightings, a campaign to urge local governments to issue proclamations declaring August SMA Awareness Month, Major League Baseball Awareness Games, and social media outreach efforts. Check out some of the results of their efforts on their Twitter and Facebook pages.
Coach to Cure MD Set for September 29th
“Coach To Cure MD” is a partnership between the American Football Coaches Association (AFCA), a professional organization for over 10,000 college football coaches and staff, and Parent Project Muscular Dystrophy (PPMD), the largest national charity devoted exclusively to Duchenne muscular dystrophy.
On September 29, 2018, AFCA coaches nationwide will promote “Coach To Cure MD” by wearing armbands, mentioning Coach To Cure MD during on and off-field interviews, and in some instances doing even more extensive media relations around the date, coaches are rolling up their sleeves and proudly getting involved.
CCHS Day Will Take Place on November 10th
CCHS Day is an awareness/fundraising campaign held yearly by the CCHS Foundation and CCHS Network. Money raised goes to CCHS Research, CCHS Conferences, and CCHS Conference Scholarships. The specifics of the 2018 campaign will be posted on their site as more information becomes available. Last year's CCHS Day raised over $183,000 for the CCHS community.
Exceptional Parent Magazine Releases Annual Healthcare Issue
Exceptional Parent's August issue is their annual issue devoted to healthcare topics. EP provides practical advice, emotional support and the most up-to-date educational information for special needs families. Read the full issue online.
ADVOCACY
Register to Vote this November
In advance of this November's midterm election, it is critical to make sure that you, your family and your friends are registered to vote at your current address. If you are unsure about your registration status, you can check by going to the website for your Secretary of State.
In the US over that past couple of years, we have seen increasing pressure to reduce or remove many home and community-based services that allow many people with disabilities to thrive. The pressure has been seen at both the state and federal levels with proposed changes to Medicaid and Medicaid-funded services, and the weakening of the Americans with Disabilities Act.
In the 2016 election, it was estimated that 35 million people with disabilities were eligible to vote, but only 16 million turned out. Voting is an essential way to make our collective voice heard and ensure that vital programs and services are protected. Find more information, resources and toolkits on AAPD's RevUp page.
The Debate Over Plastic Straws
The past few months have seen bans on straws adopted by multiple US cities, businesses and restaurants. Officials in major cities such as New York, San Francisco, Portland and Seattle have either proposed or passed bans on single-use plastic straws, with Seattle recently becoming the first major city to put a ban into effect. What some may see as beneficial for the environment, however, others may view as being discriminatory towards those with certain disabilities. NPR recently examined the argument against blanket straw bans in a piece entitled, “Why People With Disabilities Want Bans On Plastic Straws To Be More Flexible.”
New ADA Live! Webcast: Supported Decision-Making and Conservatorship
The NIDILRR-funded Southeast ADA Regional Center will host Supported Decision-Making (SDM) and Conservatorship, the latest episode in the ADA Live! webcast series, September 5th, 1-1:30pm ET. SDM is a framework that supports the capacity for rights and the capacity to act for people with disabilities and helps them make choices about their own lives with support from a team of people. Presenters will discuss recent court cases where the decision-making rights of individuals with disabilities were restored and SDM teams were established. No registration is required and questions may be submitted in advance.
RECENT RELEVENT
PUBLICATIONS
Spinal Muscular Atrophy Drug May Be Effective If Started Later Than Previously Shown
“A drug shown to be effective in the treatment of babies with the rare muscle-wasting disease spinal muscular atrophy may be effective for muscle control even when treatment is started in children seven months and older, according to a study published in the August 29, 2018, online issue of Neurology, the medical journal of the American Academy of Neurology. Previous studies focused on children younger than seven months old.”
Newswise. August 29, 2018. www.newswise.com/articles/view/699540/?sc=mwhn
Analysis of a Pediatric Home Mechanical Ventilator Population
Amirnovin R, Aghamohammadi S, Riley C, Woo MS, Del Castillo S
“The evolution of home mechanical ventilation has allowed earlier transition out of the pediatric ICU and with increasing disposition to skilled nursing facilities over time. There has also been a change in ventilator management, including increased use of PEEP upon discharge, possibly driven by changes in ventilators and in-patient practice patterns.”
Respir Care. 2018 May;63(5):558-564. doi: 10.4187/respcare.05644.
Does Size Matter When Calculating the “Correct” Tidal Volume for Pediatric Mechanical Ventilation?
Kim GJ, Newth CJ, Khemani RJ, Wong SL, Coates AL, Ross PA
“Tidal volumes standardized to predicted body weight are recommended for adult mechanical ventilation, but children are frequently ventilated by using measured body weight. The goal of this study was to examine the difference in FVC (in milliliters per kilogram [mL/kg]) by using measured body weight compared with predicted body weight in children.
“FVC differs significantly when standardizing to measured weight vs predicted weight. Obese children have lung volumes reflecting their predicted body weight from height. Children with low or normal BMI have lung volumes reflecting measured body weight. These findings suggest that targeting tidal volume by using the lower of measured and predicted body weights would be the most lung-protective strategy.”
CHEST Journal. 2018 July;154(1):77-83. doi: 10.1016/j.chest.2018.04.015.
The use of home non-invasive ventilation and the reduction of inhospital mortality of patients with respiratory failure
Piñero-Zapata M, Torres-Corbalán L
“Mortality among patients using NIV as routine home treatment was 6.45%, compared to 20.1% among those who did not use it (P<.05). Routine domiciliary treatment with NIV has been shown to be a protective factor against inpatient hospital mortality for patients who underwent NIV during their admission, through the emergency department, for acute respiratory failure or acute chronic disease, regardless of the triggering pathology.”
Enferm Clin. 2018 Jul 16. pii: S1130-8621(18)30112-8. doi: 10.1016/j.enfcli.2018.06.005. [Epub ahead of print]
EDUCATIONAL
OPPORTUNITIES
FOCUS Fall 2018
September 14-15, 2018, Fall FOCUS, Hotel Irvine, Irvine, California. More details.
ERS International Congress 2018: Paris
September 15-19, 2018, Paris expo Porte de Versailles. Find up-to-date information here.
CHEST 2018
October 6-10, 2018, San Antonio, Texas. The CHEST 2018 Annual Meeting will offer more than 400 general sessions, postgraduate courses, simulation education sessions, original investigation presentations, CME/CE credits and MOC points for hundreds of sessions and more.
Registration is now open.
Make plans to attend the Margaret Pfrommer Memorial Lecture in Long-term Mechanical Ventilation Monday, October 8, at 3:15 pm
This year's lecture, entitled “Saving Lives…One ventilator at a Time – HMV in 2018 and Beyond,” will be presented by Douglas McKim, MD, FCCP. The 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.
AARC Congress 2018
AARC’s International Respiratory Convention & Exhibition will take place December 4-7, 2018 at the Mandalay Bay Resort and Convention Center in Las Vegas, Nevada. Find out more and register online.
INDUSTRY
Global Mechanical Ventilator Market Expected to Reach $3.8 Billion by 2025
A new report published by Allied Market Research projects the global mechanical ventilator market to reach $3.819 billion by 2025. The non-invasive ventilation segment is expected to grow at the highest rate from 2018 to 2025, attributed to the fact that noninvasive ventilation (NIV) is associated with a lower risk of mortality as compared to invasive mechanical ventilation (IMV).
The Asia-Pacific region is expected to witness the highest growth rate throughout the forecast period, owing to its high population base, high ICU bed admissions, and enhanced government expenditure on healthcare. In addition, heightened incidence of chronic obstructive pulmonary disease (COPD) in the Asia-Pacific region is the key contributor for the market growth in the region.