FAQs How Does Your Ventilator Work?

One of the challenges that distinguishes my situation from many others is my ventilator dependency. While there are a lot of cripples that have to spend at least some amount of time on a ventilator, those of us that are not completely ventilator dependent may only need to be on a vent when they're having trouble breathing or when they're asleep. But I'm not that lucky. Unfortunately, my spinal cord injury was so severe, or the actual physical trauma to my spinal cord was so high up, that I can no longer breathe on my own whatsoever. I am now a C3 quadriplegic, and any cripple that is a C3 or higher will almost always be completely ventilator dependent as a result.

But before I talk about any of the specifics to my ventilator, there is a common misconception that I want to rectify first: my paralysis does not directly affect my lungs – it directly affects my diaphragm. It's the contraction by my diaphragm that allows me to inhale and my lungs to therefore inflate. Our lungs are also an organ that doesn't require some mechanical process to occur in order to function. They function simply by letting air flow into them, much like how our kidneys function simply by blood flowing through them. And that's why my lungs still function as well as most people's lungs. It's also why the only thing that's now necessary for me to breathe is some new means of getting air down into my lungs. This is where my ventilator comes in.

The ventilator works by drawing air out of the room – this can be supplemented with oxygen if I'm struggling on room air (21% 02) – and forces the air through the ventilator's circuitry, down my airway and into my lungs. At this point, my lungs take over the whole process by extracting the oxygen from the air and infusing it into my bloodstream. But in order for my ventilator to deliver air into my lungs, it first needs access to my airway. While short-term ventilator patients are often intubated or can use a mask, neither of those options are viable for long-term ventilator patients like myself. A tracheostomy tube (trach) provides stable access to my airway that allows the ventilator to deliver air straight into my lungs and bypass my nose and mouth. But because all of my air intake now bypasses my nose, I no longer have access to my sense of smell. While my sense of smell is still intact – food still tastes the same and all of that – I simply cannot inhale through my nose and utilize my olfactory receptors.

The trach also provides me with the necessary ability to take my voice away while I sleep at night. The trach has a small, liquid-filled cuff at its base that is always partially inflated to help keep the trach in place. When I go to sleep at night, I will fully inflate the cuff and ensure that no air escapes out my mouth while I'm asleep. If I fall asleep without inflating the cuff, it's possible that too much air will escape out my mouth and the ventilator will recognize this as a leak or a break in the circuit and alarm. I cannot speak, however, when the cuff is fully inflated, because all of the air from my ventilator is directed down into my lungs and can no longer pass by my vocal cords. I have to then smack my lips together in order to call my caregiver into my room, but this is always easy to do late at night when the rest of my household is asleep.

When my cuff is partially deflated and I can speak, it isn't really difficult for me to talk. The ventilator will provide me with a minimum of 14 breaths per minute, but it will also allow me to trigger additional breaths when necessary (i.e., speaking). Triggering additional breaths is something that doesn't require a lot of effort or conscious thought on my part. The only thing that takes any conscious thought is the adjustments that I make to my phrasing while I'm speaking. I have to make these adjustments, because I never want to run out of air mid-word or trail off while in the middle of making a point. So I usually have to manage my air as I speak and pause ever so briefly in order to receive another breath from the vent before I continue. This isn't something that's really noticeable, however. Only when I point this out to people do they pick up on the fact that I will talk in slightly smaller blocks than the average person.

But having a trach, like most indwelling medical devices, isn't inherently uncomfortable. It's constant presence even makes it fairly easy to forget about. Only when the trach or the ventilator's circuit is moved is it really felt, and only when either is bumped does it hurt. These "bumps" can result in some mild and momentary discomfort, or they can be severe enough to cause some bleeding to occur and my stoma site to be sore for several days. Managing my comfort level with the trach really comes down to ensuring that my caregivers understand what constitutes a safe and comfortable movement with the trach/ventilator circuit, and that they try to avoid any accidental contact with the trach throughout the day. But this isn't anything that's special to just my trach. Competence and safety are two concepts that are necessary to effectively perform all of my cares.

I treat my ventilator dependency with the seriousness that it deserves, because I know I'm only one ventilator issue away from possible brain damage or worse. But even though my inability to breathe poses the most imminent threat to my health, I want to point out that being ventilator dependent isn't nearly as nerve-racking as many people imagine. I think most people feel this way, because they only focus on all of the things that can go wrong with the ventilator. While there are indeed a number of things that can interrupt my breathing, this type of thinking will almost always overcomplicate every situation and make things feel much more impossible than they actually are. I honestly believe that there's a certain simplicity to my situation that makes both identifying a ventilator issue and resolving that issue relatively easy.

When diagnosing a ventilator issue, it really just comes down to whether my ventilator is delivering a breath or not. And the reason why my ventilator isn't delivering a breath is often unimportant, at least until the situation has stabilized and I'm breathing again. So once my caregivers determine that the ventilator isn't delivering a breath, they'll use a bag valve mask, or what's commonly referred to as an Ambu bag, to keep me breathing until the issue is resolved. This is the easiest solution to every ventilator issue and a very easy way to keep me breathing. An Ambu bag is simply a handheld bag that, when manually compressed, will deliver a breath and then reinflate on its own. The point I constantly make to all of my caregivers is that they needn't focus on everything that can go wrong with the vent, because the solution is always the Ambu bag. I can bag for however long it takes to resolve the issue with my current vent or reach my backup vent either on my wheelchair or at my bedside.

While I've blacked out due to a lack of oxygen both at home and in the hospital, it's been many years since I've had a caregiver respond poorly to a ventilator emergency. But it takes a lot of training before I trust that a caregiver will respond correctly to a vent issue. And I have to trust them. If I don't, I must continue to train them until I do or find a new caregiver altogether. Because it only takes one fuck-up to bring my life to an end. So I will frequently break my ventilator's circuit and run drills with new caregivers to ensure that they are prepared. I want to see them arrive at my side with an Ambu bag in hand before they try to diagnose the problem with the vent. I feel like all of my experiences have gotten me better at training new caregivers and simplifying the complexity of my ventilator so that everyone on my staff knows how to effectively respond to any ventilator issue. And that's all anyone can do when it comes to an emergency: plan, prepare and act.

– King Cripple

FAQs: How Do You Operate Your Wheelchair?

Adaptive equipment is a vital part of any cripple's life. These are the items and devices that make our lives easier and give us greater independence. Whereas certain pieces of adaptive equipment that I own will improve either my happiness or my health, my wheelchair is unique in that it improves both my happiness and my health. It's easily the most important piece of adaptive equipment that I own, because it allows me to go out and personally experience the world. It's also an essential tool when it comes to managing the integrity of my skin and my pulmonary health.

I can control a wheelchair entirely on my own, but there are really only three methods that a high quadriplegic like myself can use to do so. These options are a head control, a sip and puff and a mini proportional joystick. I don't have any experience with a head control – I didn't possess enough neck strength to demo it in rehab – but I have used both a sip and puff and a mini proportional joystick. The latter is my preferred method of operation, and user preference is usually how one chooses the method they want to utilize. But before I talk about why I prefer one method over the other, I want to provide a little detail on each method of operation.

A sip and puff operates a wheelchair by the user either sipping or puffing on a tube connected to their chair. A strong puff will typically drive the wheelchair forward while a strong sip will cause it to stop and then reverse. When the user wants to turn their wheelchair, they'll provide either a soft puff or a soft sip depending on the direction they want to turn. A mini proportional joystick, by comparison, is essentially just a joystick but on a slightly smaller scale, and it operates exactly as you would imagine. The user can push it up or down to drive forward or backwards, and pushing the joystick left or right will turn their chair left or right.

While the use of a mini proportional joystick may be easy to understand, the thing that makes it somewhat difficult to use is that I have to manipulate it with my lower lip or my chin. Because my paralysis prohibits any movement below my shoulders, I have to position the joystick next to some part of my body that still functions. Although some might see having a bar and joystick mounted directly in front of my face as a drawback, it all mounts low enough to where nothing obstructs my field of vision unless I'm looking down at my legs or chest. Whenever I transfer out of my chair or engage in an activity that requires me to look down, like when I'm playing board games, for instance, the whole bar and joystick rig easily swings out to the side.

The biggest reason I prefer a mini proportional joystick to a sip and puff is that I believe it offers me the greatest amount of control over my wheelchair. And that's a huge deal. The world isn't built to accommodate wheelchairs of any size, but it really isn't built to accommodate wheelchairs like mine. I have to operate a very large and cumbersome wheelchair because of my customized seating and ventilator. Even though my chair's mid-wheel drive cuts down on its turning radius, it still takes a good amount of room for me to turn and position my chair. The world is also a complicated enough  to navigate on its own. I don't need my chosen method of operation to complicate it any further. The other thing that I like is that I can converse with other people while I operate my chair. A sip and puff usually requires the user to keep the straw in their mouth whenever they operate their chair.

There are two other functions, however, that my wheelchair provides: 1) tilting my seating; and 2) elevating my legs. Being able to tilt my seating allows me to change my position throughout the day, and this is an integral part of staying healthy as a quadriplegic. Pressure sores can develop whenever pressure on an area of soft tissue obstructs or partially obstructs the flow of blood to that area. Tilting my seat allows me to shift my weight and provide relief to those areas that are prone to breakdown. Elevating my legs also allows me to stretch during the day, which can "feel" great when I've been stuck in the same position for hours, and manage my low blood pressure. Unlike when a normal person would faint from a severe low blood pressure episode, I must physically elevate my legs above my heart so that the blood that's pooled there will be redistributed (this happens naturally when a person falls to the ground after they faint).

In the grand scheme of things, I have a pretty basic wheelchair. It really doesn't do anything special or even all that complex. There are several wheelchairs on the market that can stand a user up or even climb up a 2" or 3" curb. While I'm sure that the latter option would've come in handy at some point, I prefer the basic functions of my wheelchair for one specific reason: the more functions something can perform, the greater the opportunity it has for malfunction. A lot of life with quadriplegia is about finding things you can control in a situation that is largely beyond your control. There are already a number of things that can cause me to stay in bed or miss an event. I don't ever want to have to change my plans because my wheelchair is being fixed.

– King Cripple