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an affiliate of Post-Polio Health International






This issue sponsored by:


APRIL 2016

Custom-made mask: benefits, time and cost 

Norma MT Braun, MD, FACP, FCCP, Clinical Professor of Medicine, Icahn School of Medicine, Mt. Sinai Health System, New York, New York

The nose is one of the most neglected organs and taken for granted. It is the portal of entry for the very air we need to live. The nose, with the attendant sinuses, filters and humidifies 100% of the air by the time it reaches the larynx (voice box).


But, the nose gets the least care and attention.


Here is the protocol I recommend to my patients who use mechanical ventilation, or nasal/face masks for sleep apneas, or have any respiratory problem, based on my years of clinical experience.........MORE

My name is Charlie and I've been using a ventilator fulltime for about 20 years. Presently, I am using a Trilogy100 supplied by Philips Respironics. I use my Trilogy while I am in my wheelchair, about 16 hours per day.


I hang my Trilogy from the back of my Permobil C-3 (soon to be an F3), which is powered by two 12V batteries in series (24V). Respironics makes an external 12V battery to be mounted to the wheelchair to power the ventilator. However, this extraneous battery needs its own charging...........MORE

Supported by:

Ventilator-Assisted Living

Vol. 30, No. 2, April 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

Ventilator users, health professionals, non-profits, company representatives – send comments and updates to

Do Not Take Your Nose for Granted


Norma MT Braun, MD, FACP, FCCP, Clinical Professor of Medicine, Icahn School of Medicine, Mt. Sinai Health System, New York, New York

Here is the protocol I recommend to my patients who use mechanical ventilation, or nasal/face masks for sleep apneas, or have any respiratory problem, based on my years of clinical experience.


Do NOT overuse nasal decongestants, i.e., use only when necessary and for only one to three days to break a cycle. One of the causes of bloody noses is decongestant overuse, because excessive use damages the mucosa.


The turbinates of the nostrils are baffles that trap bacteria, viruses and particles. They need to be clean to do their work of trapping dirt to prevent entry into the airways and lungs.

The nose is one of the most neglected organs and taken for granted. It is the portal of entry for the very air we need to live. The nose, with the attendant sinuses, filters and humidifies 100% of the air by the time it reaches the larynx (voice box).

But, the nose gets the least care and attention.


Nose Structure

Use nasal saline cleansing a minimum of twice a day (in the morning and evening). NeilMed has a lot of saline products in many forms that are easy and inexpensive to use.


When there is weakness of inspiratory muscles, I prefer Simply Saline™ since it is in pressurized can and only delivers a squirt when pressed, obviating sucking nasal secretions back into the unit.


Always compress one nostril and inhale while spraying so that whatever the velocity of the sniff there will be a better distribution to the mucous membranes of the nostrils. When using a solution, always do one puff at a time for each nostril. Repeat at least twice or until clear. If you taste the salt water, it has gotten far enough into the nose.


When blowing to clear secretions/saline, always compress one nostril and blow the other; then alternate. This allows the full force of the effort to more effectively clear the passages.


If you are fighting an upper respiratory infection, substitute the Simply Saline™ with Simply Saline Plus with menthol.


If you use oxygen, start by using a saline gel, after the cleansing and before one places the cannula in the nose. Ayr is the brand I suggest. It lasts longer. Also, it does not hurt to switch the cannula to the mouth to give the nose a break.


To stop a nose bleed, gently compress the nostril bleeding until bleeding stops. The time varies with the medication(s) you may be using or due to the severity of the mucosal inflammation. Once bleeding has stopped and the above cleansing has been performed, you can add elements.


If saline solution and saline gel are not enough, then use a cotton swab to apply a very scant amount of Vitamin A & D ointment to the lower base only of both nares (nostrils) to lubricate and coat this mucosa. If there is an infection, I prescribe Bactroban ointment twice to four times a day for five to seven days.


If allergies are the cause of nose problems, after the above saline cleansing, I prescribe NasalCrom (sodium cromoglycate), which is now over the counter. It blocks the allergic reaction from occurring, but it has to be used every six hours if allergy exposure cannot be avoided.


If that is not sufficient, one can use OTC Flonase or Nasacort twice a day and always after the cleansing.


Another potential help for allergy sufferers is taking Singulair before bedtime, which will block the cascade to congestion of the nasal mucous membranes.


OTC antihistamines, such as Benadryl and Chlorpheniramine can be soporific (induce sleepiness) and drying. The antihistamines loratidine, fexofenadine, and cetrizine in combination with oral decongestants might be better alternatives. However, the decongestants can keep one awake at night or be too drying.


If it is a clear mucous runny nose that is the problem, then Iipatropium bromide (Atrovent) nasal spray at 0.03% or 0.06% every six hours can be prescribed.


If bleeding is still a problem, see an otolarngologist (ENT). The sinuses may be contributing.


Obsessive use of a humidifier along with the ventilator, if you use one, is essential. But they may not be as efficient as is needed. The amount of moisture depends on the ambient temperature and the humidity as well. So, the same settings may not be sufficient on different days at different times. Also, they have to be meticulously clean.


Lastly, I teach breathing relaxation breaths for when one first gets up in the morning which can also be done any other time as well. Relaxation reduces stress, stress hormones and increases oxygen and reduces work of the heart.


  • Start by sitting comfortably with back supported, head and back as straight as possible and arms extended with hands in lap.

  • Breath air in through your nose into your thorax from chin to pubic bone counting to 4 until you are maximally expanded.

  • Hold to the count of 7, if possible.

  • Slowly exhale through pursed lips to a count of 8 using your abdominal muscles to help push the air out.

  • Repeat for 3 cycles.

  • If you are not able to hold for the counts, hold and exhale for what you can, but in the same ratios. Practice may increase your capacity.


On a personal note: I keep my nose cleaned twice a day whether I need it or not. It reduces upper respiratory infections. I keep a small nasal saline spray in my purse to use when exposed to coughers in public, in addition to hand sanitizer.

Vent Users Speak

Vent Users Speak

Too Many Batteries 

My name is Charlie, and I've been using a ventilator full-time for about 20 years. Presently, I am using a Trilogy100 supplied by Philips Respironics. I use my Trilogy while I am in my wheelchair, about 16 hours per day.


I hang my Trilogy from the back of my Permobil C-3 (soon to be an F3), which is powered by two 12V batteries in series (24V). Respironics makes an external 12 V battery to be mounted to the wheelchair to power the ventilator. However, this extraneous battery needs its own charging.


Since I am an electrical engineer, I knew there must be a better solution.


I determined that the power available from the wheelchair batteries is more than enough amperage to power the Trilogy, too. The additional load on the wheelchair's batteries is negligible.


Here is my setup.


I have a DC to DC converter installed on both of my power chairs. I use the PST-DCCP constant current DC/DC step-down converter, which costs about $25 plus shipping. We mounted the converter under the cowling of my wheelchair using Velcro. 


The power supply (my two wheelchair batteries) has a set input voltage of 24V. On the top of the power supply, there is an adjustment that will set the output voltage. This adjustment is done on a "10 turn potentiometer.” This means that the adjustment can be made fairly accurately.


I have my converter set to 12.6V because that is the nominal voltage from a car battery.


It is connected with a 12V DC cable available from Respironics to a special connector that plugs into the back of the Trilogy.


To summarize: you will need a DC to DC converter, the appropriate cable, someone to adjust the potentiometer for 12.6V, and someone to mount the converter to the chair.


Be aware that the converter is always "hot.” By that I mean that the converter is always putting out the proper voltage no matter what. If you have the chair turned off, the converter still works. If you leave your chair unattended for many days, eventually the converter will drain the wheelchair's batteries. I do not use an on-off switch.


If you have questions, contact me at

Too Afraid and Too Stubborn 

Lilly Harold,


In 2013, at Thanksgiving, our children had come to visit. We enjoyed a wonderful meal of turkey and southern cornbread dressing with all the side dishes. Later that night, after we went to bed, I began to have extreme pain in my stomach. Frankly, I thought I was having very bad indigestion.

By morning and with no relief, Ray, my husband, called the paramedics and I ended up in the hospital with a tube down my throat into my stomach for six weeks to let my stomach “rest.”  After that period of time, I had blended soups for nearly a year because my stomach would not digest any solid foods.


In 2014, even though I was using a BiPAP system at night, my breathing during the day was slowly getting more difficult due to post-polio weakness. I did not say anything to Ray for about six months because I did not want him to be worried.  I also was very afraid that I would have to be intubated or trached. I had been on a ventilator when I had my child and one other time briefly. I knew how difficult it would be.


Ray soon became aware that I was having breathing problems during the day and at night, even when I was wearing the BiPAP. He constantly tried to get me to go to my pulmonary physician, but I was too afraid and too stubborn.


In October of 2014, I went to the ER and within five minutes they had me in ICU and on my BiPAP with supplemental oxygen. Two days later my saturation level was down to 55 and it was time to make a decision. I was intubated and then trached and remained hospitalized for two months.


I went home with the Trilogy100 mounted on the back of my power wheelchair. It allows me to go shopping and remain active. It can be connected to a wall outlet or run on batteries that will last me three hours, with an internal battery that will last me two hours. 


Since I have a trach, its inner cannula has to be changed each morning and the stoma area surrounding it cleaned. After the tracheotomy, I had a peg tube inserted in my stomach since I now cannot swallow any food or water. Before I get out of bed, Ray gives me breakfast through the peg tube which consists basically of formula, Peptamen 1.5. During the day, regular suctioning must be done.


I am a high level quadriplegic from polio, so these chores are handled by Ray, in addition to bathing, dressing and getting me up in my wheelchair. (We have an overhead lift.) Ray also does the cooking, dishes, washing and some cleaning.


We do have help twice a week through the Alabama State Homebound Program. I try to help with what daily activities I can once I am up in my wheelchair, but the truth is I mostly offer advice, give recipes, help make decisions and work on my computer.


Ray is also a polio survivor with daily muscle pain and weakness. He struggles with all he has to do many days, but does everything with a glad and gracious heart. 


My fear and stubbornness almost cost me my life. Please do not let this happen to you, and go to your physician when you first become aware of problems affecting your breathing.


Lilly has published Memories to Cling, the story of her life as a child with polio, her educational endeavors, her family and married life, and her later years as an advocate.

And More 

“I have been totally negligent in thanking you for all you did to help Medicare reverse its decision about use of the Trilogy. I heard from them in mid-March. I am not sure why they thought post-polio weakness was not a neuromuscular condition.”

“I am having health issues and muscle weakening is one problem. I went to the hospital for testing. The good news is that my heart, lungs and thyroid are all OK. I sleep in the iron lung and use the PLV-100 all day. The bad news is serious constipation must be dealt with daily. Embarrassing but OK for now. I would like to know how other vent users with increasing muscle weakness deal with constipation. Would you ask them to send the answers to IVUN (”

“Today I took my Trilogy100 on sip and puff to my routine six-month internist appointment. He had never seen this. Last week I took it to my routine cardiology visit, same thing, he had never seen this. At my next local pulmonologist appointment, I will show him the sip and puff. He has not seen it and is concerned that it will give me a pneumothorax. I wheel it around in a stroller I bought for my granddaughter so long ago.”

From a spouse: “My husband and I purchased a Trilogy for a backup as peace of mind. He died a year ago and I would like to sell it. If you are interested in details, such as hours on the machine and a price, contact”

A polio survivor in the Netherlands uses a trach that was discontinued by Teleflex years ago. It was made under the name of Rusch (see photo to the right). He is using his last one now and is desperately trying to find residual stock that he can purchase. Contact



Coverage of Vents and RADs 

Phil Porte, Executive Director of National Association for Medical Direction of Respiratory Care (NAMDRC) reported in the March 2016 CHEST Physician that it continues to work with Centers of Medicare and Medicaid (CMS) and interested parties to address issues related to home mechanical ventilation (HMV) and bilevel/RADs (respiratory assist devices).  Medicare HMV policies are outdated and do not reflect the state-of-the-art standard of care. CMS expects well-documented, peer-reviewed support to change a policy. Porte states, “And herein lies a notable problem – trying to prove negatives. On the home mechanical ventilation issue, there are obviously no randomized clinical trials that compared continued mechanical ventilation with frequency of death upon removal of mechanical ventilation.” The current policy regarding bilevel devices focuses on the need for a trial without a back-up rate and research is lacking on this specific issue.


HomeCare also reported that in early April the American Association of Respiratory Care, the American College of Chest Physicians and the National Association for Medical Direction of Respiratory Care submitted a reconsideration of the current Medicare National Coverage Determination for home ventilators, including bi-level devices, to CMS.

Disability Integration Act Action 

National ADAPT was in Washington, DC, April 10-14. They marched to the White House asking for support of disability civils rights. Sponsors are needed for the Disability Integration Act (S 2427), which will prohibit discrimination against individuals with disabilities who need long-term services and supports, and for other purposes. Ask your Senator for support and track the bill.

Jimmo v. Sebelius Plaintiffs Return to Court to Urge Enforcement 

As reported on the Daily Dose blog of the Christopher and Dana Reeve Foundation, advocates say Medicare is still not complying with therapy ruling. On March 1, 2016 the Center for Medicare Advocacy (CMA) filed a motion in court, claiming that the federal Medicare office (the Centers for Medicare and Medicaid Services or CMS) has not complied with the ruling in Jimmo v. Sebelius and continues to deny therapy coverage on an “improvement standard.” For details, see Jimmo v. Sebelius.

ABLE National Resource Center 

The ABLE National Resource Center (ANRC), founded and managed by the National Disability Institute (NDI), provides information concerning the benefits of an ABLE account. ABLE accounts are tax-advantaged savings accounts for individuals with disabilities and their families, to be created as a result of the passage of the Stephen Beck Jr., Achieving a Better Life Experience (ABLE) Act of 2014. The ANRC aims to educate individuals with disabilities and their families and other stakeholders about ABLE’s potential positive impact on the lives of millions of Americans with disabilities.


Changes suggested to the current law: 


  • Under the latest proposals, beyond the existing annual cap of $14,000, those who are working could also deposit their earnings up to the federal poverty level – currently $11,770 for a single person.

  • Eligibility for the accounts would be expanded to include people with disabilities that onset by the age of 46, an increase over the current requirement that conditions must exist prior to age 26.

  • The amendment to the law would allow families to be able to rollover money they’ve saved for an individual with a disability in a 529 college savings plan to an ABLE account.


Help for Caregivers 

S. 2721 - Social Security Caregiver Credit Act of 2016 has been introduced so family members who leave their jobs or limit their hours in order to care for a relative would be able to continue accruing credits with Social Security.

The proposal calls for caregivers who provide at least 80 hours per month of unpaid assistance to a relative to be able to earn Social Security credits for up to five years.

The credit would be applied on a sliding scale depending on the caregiver’s earnings, with a maximum credit equal to half of the average national wage.



Resources for Parents with Disabilities 

Disabled Parenting Project (DPP) is an online community by and for parents and prospective parents with disabilities. The space is for sharing experiences, advice, and conversations among disabled parents as well as those considering parenthood. The DPP also serves as an information clearinghouse and interactive space for discussion and connection.



Srin Madipalli, who has spinal muscular atrophy (SMA), is a London-based lawyer turned entrepreneur who co-founded Accomable last year with his friend Martyn Sibley, who also has SMA. Billed as “Airbnb for people with disabilities,” the online booking service offers more than 500 adaptive properties in over 36 countries worldwide.​


Advice from the CDC on Mosquitos 

The Centers for Disease Control and Prevention provides some helpful reminders on Mosquito Bite Prevention For Travelers.

Independent Living Resources's Guide to Resources and Funding for Independent Living provides comprehensive information regarding:

  • how to fund home repairs by using insurance and other financial assistance for homeowners;

  • ways to live independently while renting -- with a description of the Federal Housing Act and organizations that support disabled renters;

  • costs for common accessibility remodeling projects.


Walmart Expands Grocery Delivery Service 

Walmart Grocery is a new pickup and delivery service. Simply place an order online, choose a timeslot, and your order will be loaded directly into your car at your local Walmart, or in some markets, you can have your order delivered right to your doorstep. Check here to see if the service is available in your zip code.​

Recent Relevant Publications

Recent Pubs

We have developed alternative reasons that could potentially explain the results and that can be explored by post hoc analysis of the SERVE-HF data. We believe that our analysis is of critical value to the field and of particular importance to clinicians treating these patients.”


SERVE-HF: More Questions Than Answers

A Commentary by Shahrokh Javaheri; Lee K. Brown; Winfried Randerath; Rami Khayat, Chest. 2016;149(4):900-904.


“Termed obesity hypoventilation syndrome (OHS), this disorder has been traditionally defined by an awake PaCO2 > 45 mm Hg in an individual with a BMI > 30 kg/m2 when other causes of chronic alveolar hypoventilation have been ruled out. It has been suggested that a raised serum bicarbonate level (> 27 mmol/L) in the absence of another cause for a metabolic alkalosis should be included in the definition of OHS.”


Obesity Hypoventilation Syndrome: Weighing in on Therapy Options
A Contemporary Review in Sleep Medicine by Amanda Piper, PhD, Chest. 2016;149(3):856-868.  



“Our results have clear implications for clinical care, suggesting that cognitive effects begin early in the CCHS disease process, possibly before diagnostic confirmation and well before school age.”


Congenital Central Hypoventilation Syndrome: Neurocognition Already Reduced in Preschool-Aged Children

Original Research: Pediatrics by Aaron J. Charnay; Jeanne E. Antisdel-Lomaglio; Frank A. Zelko; Casey M. Rand; Michele Le; Samantha C. Gordon; Sally F. Vitez; Jennifer W. Tse; Cindy D. Brogadir; Michael N. Nelson; Elizabeth M. Berry-Kravis; Debra E. Weese-Mayer, Chest. 2016;149(3):809-815.



“For me as a clinician, it seems difficult to have to take an end of life decision (EOLD) in the situation of acute admission. We would rather give a trial of the ventilator than withhold ventilatory support, as withdrawal of the ventilator in non-responders is easier to decide. Patients with chronic diseases, where the lifespan is difficult to predict, often fail to accept an EOLD. We have far more patients with amyotrophic lateral sclerosis taking an EOLD than patients with COPD taking one.”


The clinician’s perspective about “Noninvasive ventilation: from acute to chronic intervention,” a blog on European Respiratory Society website.

Educational Opportunities

Educational Ops

Pelvic Health Matters: Webinar Series for Women with Mobility Impairments 

A four-part webinar series is being offered on pelvic health issues for women with mobility impairments by Center for Research on Women with Disabilities (CROWD) at the Baylor College of Medicine.


The first two webinars were held April 6 and 20, 2016, and the slides may be downloaded.


The next two webinars will be May 8th (Bladder and Bowel Issues That Affect Sexuality) and May 20th (Access to Quality Pelvic Health Care for Women with Mobility Impairments).

Peg Nosek, PhD

The series is free, but registration is required.


The mission of the Center for Research on Women with Disabilities, also known as CROWD, is to promote, develop, and disseminate information to improve the health and expand the life choices of women with disabilities. Ventilator user Peg Nosek, PhD (left), is a professor at Physical Medicine & Rehabilitation at the Baylor College of Medicine, Houston, Texas and the leader of the team at CROWD.

FOCUS Spring 2016 

May 6-7, 2016, Gaylord Opryland Hotel, Nashville, Tennessee. Details and registration.


Annual SMA Conference 

June 16-19, 2016, Disneyland Hotel, Anaheim, California. Registration for families is now open.


Annual Connect Conference 

June 26-30, 2016,  Parent Project Muscular Dystrophy, Orlando, Florida. Details. Download the agenda.

European Respiratory Society (ERS) International Congress 2016 
September 3-7, 2016, London, United Kingdom.

AARC Congress 2016 

Save the Date! October 15-18, 2016, American Association for Respiratory Care Congress 2016: 62nd International Respiratory Convention & Exhibition, San Antonio, Texas.

CHEST 2016 

October 22-26, Los Angeles, California. More.

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.




New Videos from Dima Italia 

Dima Italia, an Italian company marketing respiratory devices dedicated to the acute and home care market, has uploaded a series of videos to YouTube.


Secretion Clearance: Percussion Therapy


Secretion Clearance: Cough Assistant Therapy


Recall Expanded on Draeger Medical Devices 

In mid-February, the FDA said it expanded its recall of Draeger Medical's Evita V500 and Babylog VN500 ventilators to include the optional PS500 batteries after they were updated with new power supply firmware that failed to correct the issue depleting the battery.


The original recall, initiated last September and updated in December, put the ventilators on Class I recall status due to an error with the ventilators in which the battery does not last as long as expected. The battery indicator light on the units show as sufficiently charged even when the battery is depleted, the agency said.


Draeger said it will replace the affected PS500 power supply units.

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