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