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Avery Biomedical Devices
The Avery Breathing Pacemaker System is a phrenic nerve stimulator, also called a diaphragm pacemaker. It consists of surgically implanted receivers and electrodes mated to an external transmitter by antennas worn over the implanted receivers. Phrenic pacing provides ventilatory support for patients with chronic respiratory insufficiency whose diaphragm, lungs, and phrenic nerves have residual function. For more information on Avery's Breathing Pacemaker technology, a referral or consultation, the implantation processes or the quality of life, conatct Neil Grossman, Director of Sales at neil.grossman@averybiomedical.com, or Nicole Ficarra, Communications Coordinator at nicole.ficarra@averybiomedical.com.


Vent Batteries: A Brief Note on Their Past and Present
Nick Dupree, VENTure Think Tank Team 
That people on vents often aren't aware of using car batteries with a simple AC/DC inverter among other alternatives doesn't surprise me; in this case, there are vested interests up and down the supply chain that are ignorant themselves or are quite interested in not knowing.  It's a complex gumbo of unknowing actors.  First you have the ventilator manufacturers, who are banking on selling the expensive, exactly-to-spec-for-that-model ventilator batteries (the kind of batteries insurance is covering) and have the FDA breathing down their necks on a good day, and doubtless the regulators would blow a gasket if they found out not-to-spec batteries were being used.  And the manufacturers and vendors alike aren't likely to teach vent users independence from the expensive exactly-tailored-to-the-model-you-have batteries.  Most vendors probably aren't even aware of stopgap power solutions EXISTING beyond what the manufacturers send them, and thus the end-users aren't aware.  The manufacturers' branded, patented, proprietary, small batteries are designed to be completely safe and FDA-pleasing, and to provide a modest time cushion (4-6 hours each, maybe 3 given my particularly high vent settings) with which to visit a doctor and plug in once there or to get to a hospital in the event of an outage.  FEMA, state and local OEMs, and hospitals and their doctors have ingrained in everyone year after year after year "if you're on life support, go to the hospital immediately if you've lost power."  It's not surprising that evacuating to a hospital is the default plan, even for the batteries' designers.

I have a wider lens, a broader context for backup power options because I remember the advent of the home ventilator in the 1980s, when there were no manufacturers' batteries.  I have no doubt that batteries outside of the small, proprietary ones are safe and effective, since early adopter vents like the PLV and LP series ventilators had adapters sold as standard accessories for direct-connection to DC power (plug right in to a big marine battery or the cigarette lighter in your car, pulling from the car battery).  There was major medical insurance back then, and it was common for vendors to supply two marine batteries, even if Auto Zone or whatever were the only supplier vendors could turn to.  Just as vendors today know only exactly-to-spec-for-that-model ventilator batteries, back then vendors only knew of marine batteries and the like.

The exclusive, proprietary ventilator batteries didn't exist until next gen ventilators were available, beginning in the late '90s, and they are expensive and exclude all but that particular model of vent, and adapters for other DC power sources (big marine batteries for example) either don't exist or are intentionally prohibitively expensive.  I found out when I was on the LTV (LapTop Ventilator—the first next gen ventilator—loud turbine-driven) on Roosevelt Island for a time, that if I wanted to hook up my marine battery and get 7-8 hours of freedom vs. 3-4, only the special-order proprietary adapter could do that, and it's $2000!  no one would cover that.

With no malice involved, the vent supplier/vendor (DME company) typically has a captive audience, a monopoly on informing the vent users of their backup power options, and the vendor usually doesn't know themselves that powering the vent is possible without the manufacturers' batteries.  From decades of hurricanes on the gulf coast, I know using car batteries and an AC/DC inverter is safe.  You put the ventilator's 3-prong plug into the socket of the inverter just like it were your wall socket, and the vent pulls stable, strictly controlled alternating current.  The ventilator isn't in any danger, though I wouldn't say the same for the battery (though AC/DC inverters do squeal a deathly alarm to warn you of a dead battery or waning/over-taxed current).  If something is going to go wrong while using an AC/DC inverter, it'll likely be the battery, which is liable to cry uncle and call it a day.  For this reason, Auto Zone is unlikely to take business from the ventilator manufacturers' batteries, and I advocate the AC/DC inverter as an emergencies-only plan when you've more than two car batteries in reserve, preferably many more.  The aforementioned direct DC adapters are much more appropriate for routine use.

About insurance covering extra proprietary batteries, the chances are slim to none.  The exactly-to-spec-for-that-model ventilator batteries are triple or quadruple the cost of what they covered for a really powerful, top of the line marine battery ($300-$400-$450) in the 1980s!   I have two of the smaller, branded batteries too.  I've never heard of someone having more than two manufacturers' batteries.
Education on these issues is crucial!


Thoughts on the History and Future of Ventilator Technology and Current Policy Barriers
Nick Dupree, VENTure Think Tank Team
The whirlwind of technological advances that hit medicine, especially those new medical devices that emerged in the latter half of the 20th century: the pacemaker, wearable insulin pump, the positive-pressure ventilator and its subsequent miniaturization for home use, have caused major upheavals in who can survive long-term.  The rapid pace of technological progress has meant people like me, who were children on ventilators, are now adults on ventilators.  Life-sustaining medical technologies have changed society forever; the implications are numerous and far-reaching enough to fill an encyclopedia.  Hospitals and the medical industry, however, have been slow to adapt to the medical devices they have launched and applied.  The bureaucratic sclerosis that afflicts North America's hospitals has kept them from adapting to advanced technology and offering the best services to users of life-sustaining medical devices.  The history of medical technology, and the way hospitals are failing to adapt, is something we all should be aware of.

In the beginning, the first ventilators were negative pressure ventilators or “iron lungs.”  An iron lung works by enclosing the torso in a chamber, a huge box roughly 6’ long, 3’ wide and 3’ deep, which creates a vacuum, then a pump drives a sort of suck-action upon the chest (negative pressure) to open the lungs.  Later, the positive pressure ventilator, which simply pumps air (positive pressure) to open the lungs, was invented.  Odd that the far more Rube-Goldberg-convoluted-solution, the iron lung, came first.  Iron lungs were not portable in the slightest, which kept most respiratory patients that needed one stuck in institutional settings (though in one rare television portrayal, “No Pain,” a 1959 episode of Alfred Hitchcock Presents, a powerful businessman comes home in an iron lung).  The first positive pressure ventilators weren’t much more portable.  But about the time America got home computers, home ventilators became available too (the earliest adopters were able to get a home computer or ventilator in the mid-to-late ’70s).  The ventilator miniaturized at about the rate the computer did, and the smaller home ventilator meant freedom for many; soon, you had vent users in the community, riding through city malls and parks, a home ventilator mounted on the back of the wheelchair.

My younger brother Jamie was really lucky to be born after the advent of the home vent, though the early home ventilators had serious problems.  The settings knobs on the LP-3 ventilator weren’t ratcheted, so they would spin freely, and the dog nudging the vent accidentally or a nurse moving the vent intentionally could mean a potentially lung-blowing settings-change.  Such free-moving settings knobs posed a very serious threat.  The LP-4 ventilator corrected the knob problem, but tended to randomly malfunction and quit breathing.  That is why Mom preemptively took Jamie to the hospital when Hurricane Elena hit the Gulf Coast in 1985; if another LP-4 failure occurred, she didn’t want to take the chance that downed trees might be blocking the path to get to another vent or the path for a replacement vent to get to our house.

In early 1992, when I was just 10 years-old, I was put on a BiPap, a type of non-invasive ventilator that connects to your face via a mask or nose piece—in my case, soft silicon "nasal pillows"—held on with velcro straps that wrap around your head.  I hoped that I could forestall a trach and ventilator, avoid having a "vent like Jamie."  I did delay the inevitable, but for too long; by the summer of 1994 my lungs were so clogged with mucous I couldn't manage, stacked for years, that my pulmonologist observed "no breath sounds" in my lungs excepting in the upper quadrants.  On November 22, 1994, I was trached and put on a vent.  Technology like the suction machine and the nebulizer enabled me to clear my lungs via the trach.  Had this happened just 20 years before, when few of these technologies existed, it's unlikely I could have survived. 

Our household then had two kids on two LP-6 ventilators.  The LP-6 ventilator, which I think came out around 1986, had advanced far beyond the flakiness of the LP-4; the LP-6 was hale and hearty, its analog pressure needle swinging up with each breath, its setting knobs sturdy and its air-pumping pistons neigh-unstoppable.  As the LP-6 was phased out in the late '90s, we were put on the very similar LP-10 ventilator, which I think came out around 1989.  Meanwhile, the first digital, or "microprocessor ventilator" to see wide adoption in the home, the LTV (LapTop Ventilator) rolled out in the latter half of the '90s.  Microprocessor ventilators like the LTV represented a major departure: not only do they deliver air volume with digital exactitude whereas the analog LP vents can only approximate a volume setting +/- 100mL, they achieve greater miniaturization by replacing the old standard piston-driven ventilation with a flatter turbine.  The turbine provided a miniaturization breakthrough, in addition to an entirely new way of ventilation.  Though I appreciate the digitization and miniaturization—the LTV really does resemble a laptop computer, albeit a clunky '80s IBM laptop, and at 15 lbs. it is half the weight of the LP vents—for those of us who grew up on the LP vents, like Jamie and I, the switch to turbine-driven breathing can be difficult to impossible. 

Turbine-driven ventilation is so different because, while a piston pumps a certain volume, delivering a breath, then stops, a turbine never stops.  Even off-breath the vent is giving you some minor flow, referred to as "bias flow."  Though bias flow isn't CPAP (Continuous Positive Air Pressure, sometimes used for those who have sleep apnea) by a long shot, it's an apparently inescapable side effect of turbine vents, and a very different way of breathing.  Few respiratory therapists seem to understand, but the turbine vents can be as jarring and dangerous for us as an early home ventilator would be for someone whose chest wall has grown used to the iron lung.  Jamie has yet to make the transition to next-gen ventilation.  It has proven too different, impossible for him to physically tolerate, so far.

We were able to solve the problem, at least in my case, by finding the Newport HT-70.  The HT-70, as far as I know, is the only next-gen microprocessor ventilator to breathe with a high-tech micro-piston instead of a turbine.  At 17 lbs., it's about the weight of the LTV, but its square case is tinier than any of the rectangular LTVs.  When it boots up, a soothing female computer voice says "Welcome to HT-70!"  Its glowy front display gives all relevant statistics in digital LED, not needles swinging before laminated panels.  It has a serial port and two USB ports to export data, including up to 1,000 of the last alarm incidents recorded and trend graphs.  Other microprocessor ventilators, like the Trilogy. come with an ethernet port to stream data out to clinicians or tech support staff.

But I don't embrace the next gen ventilators without reservation.  The fact that the HT-70 pumps the same volume of air with one micro-piston as the LP vents do using two, big, weighty pistons is quite enough of a technological marvel for me.  I do find it unnerving when my vent wants a software update.  Technological complexity can be an extreme disadvantage, especially in our currently ill-prepared, stretched-to-breaking-point health care system in the U.S..  I often wonder if analog ventilators are more resilient.  But the march toward greater digitization was well underway in the late '90s, and you can't un-ring that bell.  By 2010, most LP vents, along with their cousins, the PLV vents—famously used by Christopher Reeve—had been taken out of rotation, phased out, retired.  Today, in 2013, people using the old technology in the U.S. and Canada are probably in the double digits.  Nearly everyone on a vent today is breathing on a vent run by 1s and 0s. 

Already there are smart apps like AliveCor’s iPhone ECG (an iPhone cover with sensors) that can give patients an ECG (electrocardiogram) on the fly.   It's already saved lives.  The iPhone Ultrasound is being prototyped.  And it's not hard to imagine that ventilators could soon be an app, at first an app that aggregates the data that the vent collects into smart charts and graphs.  The future is inexorably a digital future, and greater and greater numbers of us will live longer, better lives because of these innovations.

Unfortunately, most hospitals have policies and rules that make it difficult for them to provide the best care for the growing number of us using life-sustaining technology.  Someone surviving on a wearable insulin pump, for example, would be unable to get it replaced or repaired at most hospitals should it fail.  The pump isn't hospital property, so multiple barriers of jurisdiction, warranty and training ("we aren't trained on that model") crop up, making the simple difficult to impossible, and making the hospital seem an unlikely source of repairs for an increasingly cyborgian society.

For vent users, questions of ownership, jurisdiction, training, and so on are especially challenging when we land in the ER with our high-tech home ventilator.  As the economic arrangements that made on-call service from home medical suppliers (normally referred to as DME, durable medical equipment providers) possible in the '80s largely no longer exist, DME service for home ventilators varies.  DME providers generally don't have the resources to do rapid response, and depending on funding may or may not leave a back-up ventilator in the home, leaving some vent users nowhere to turn but the ER in the event of a true, life-threatening mechanical failure.  More common occasions, landing in the ER for medical not mechanical reasons, present the same problems.  Since portable ventilators are primarily marketed and sold to DMEs for the home user, the chances your local hospital has a ventilator of your make and model are slim.  This typically means the hospital will put you on a big hospital vent, which depending on your situation may be generations behind or ahead of your home ventilator and could be different enough from what your tracheostomy, trachea and/or lungs are accustomed to to cause serious problems.  Most hospital respiratory therapists aren't aware of the risks I've described; one whispered "we aren't trained on that model" is usually all it takes to remove someone's home ventilator in favor of the hospital's standard model.   Something I see as akin to a lung transplant sans surgery is taken quite lightly in hospital settings.

Hospitals shouldn't be sequestered from the waves of new and innovative life-sustaining technologies increasingly prevalent in the home.  Vent users should be able to rest-assured that their city's medical facilities can provide them with appropriate, vent-literate care in the event of an emergency.  But there's a long way to go and many policies to be rethought before hospitals near that goal.  In the short and medium term, vent users are left to wonder: why is a problem of ownership and familiarity—a problem that might not even exist if, in a rare situation, the local DME provider and local hospital were run by the same company—seen as more important than my breathing? 


Suffolk County Emergency Preparedness Registry
The Suffolk County Office of Emergency Management has developed an expanded the Special Needs Registry into a  county-wide registry for ALL residents to include those with special and/or functional medical needs. This secured encrypted registry is voluntary and free. It is designed to assist first responders and emergency planners in identifying those residents that may need assistance in evacuating and special sheltering during an emergency so that they may develop the necessary plans. It will also aid emergency planners in the development of shelter plans for those residents with Special and Functional Medical Needs, while enhancing communication to the end user and there emergency contacts.

Two things that I wish I had known about trach tubes...
Knowledge isn't just power, when you're trach-and-ventilator-dependent, knowledge is power, safety, even survival.
A local tragedy involving the death of a young man we knew due to the inability to get a trach back in during an emergency led to extra awareness in our community and much more diligence regarding carrying emergency back-up trachs everywhere, especially a smaller-size hard Shiley trach and Ambu bag with face mask for emergencies of stoma closure or restriction.  This knowledge saved my life in May 2000 when my tracy stoma closed completely, skin closed over from behind, during a routine teach change.  Mom was able to bag my face until my grandmother could force the much smaller super hard plastic Shiley through.  That August I had the stoma surgically "revised" to prevent this from recurring, but knowing to have the emergency smaller trach and bag with mask saved my life.  Knowledge is survival sometimes. 
 
But it's inevitable that there were things I didn't know.  Here are two trach tube facts that, though not directly related to life-and-death, I really wish I had known...
1) Complications of the initial tracheostomy procedure: placement of your first trach tube requires tracheotomy surgery, a fairly quick and straightforward procedure to create the hole or stoma where the tracheostomy tube (trach tube) is placed.  In the post-op recovery phase, infection mitigation/prevention needs to be emphasized, i.e. clean the new stoma site daily or even Q12. Unfortunately it happens so often with new trach stomas, that the hospital nurses are reluctant to disturb the new stoma/wound, so no serious cleaning of the area occurs for multiple days post-op, and infection sets in at the site.  "Clean the site" sounds basic, but is often overlooked by doctors and hospitals who have a surgery-and-medicine-only focus... it's also seldom mentioned in other material about the tracheotomy surgery online.  A localized infection at the stoma isn't likely to spread and will be treatable with topical and/or oral antibiotics but it can certainly make the tissues in the affected area more complicated down the line.

2) There's no magic bullet for speaking with a trach. Though me and my younger brother have always talked on our ventilators, I spent the better part of a decade trying different trach tubes and trach advice, thinking that I could speak as clearly as Christopher Reeve if I had the right devices, super trach or super vent.  While the right technology is very important, and some trach tubes, vents, etc. are undoubtedly better for my unique needs than others, the ability to speak is influenced most by the ways your underlying condition changes your vocal chords and the pertinent musculature.  With high spinal cord injuries (like Reeve's) that necessitate mechanical ventilation for breathing, speech can be affected but more vocal musculature is likely to remain than in late-stage muscular dystrophies (or in our case, unspecified infancy onset metabolic myopathies).  In some cases a speaking valve can make a big difference for a trached or trached-and-vented person; in my case the impact was small.  It helped, but with the muscle weakness being so prominent and unchanged, and the pre-existing stoma damage and leakiness, there's no "magic bullet," and I sounded much like before.  I still speak, though. 
 
Disclaimer: I'm a guy on a vent not a doctor, and my account of my own experiences shouldn't be construed as "medical advice." 

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