What’s his condition anyways?

Trent has Complex Sleep Apnea. At first glance, I don’t think people fully understand a couple of things. First, I don’t think people really get what sleep apnea is. Which, secondly, leads to it generally being viewed as, “not a big deal,” or something “you just wear a machine to sleep” to fix.  So, on that note, let’s clear up a few things before we dive in!

Sleep apnea is not: “not being able to sleep.” 

Sleep apnea is not: “oh, he snores.” 

It is not: “just for people who are overweight.” 

And it is not always: solved by “just wearing a CPAP/BiPAP/ASV machine.” 

Sleep apnea is, to put it in simple terms: when you stop breathing when you are asleep, over and over and over and over again for different lengths of time. Sleep apnea varies in severity based on how many times you actually stop breathing per hour. 

The mild range is 5-15 times per hour, the moderate range is 16-30 times per hour and the severe range is 30+. That’s over 30 times per hour where you are not breathing and cutting off oxygen to your brain and other essential organs within your body. There are four common types of sleep apnea: 1. obstructive, 2. central, 3. mixed and 4. complex.

This is not to mention other types like positional sleep apnea, sleep apnea caused by altitude or sleep disordered breathing. But we will get into those another time. 

Obstructive sleep apnea made simple: Something blocks your airway when you’re asleep and you can’t breathe. You make an effort to breathe, but there is a mechanical blockage.

Central sleep apnea made simple: No effort given to take a breath. Your brain isn’t signaling your diaphragm to breathe.

Mixed sleep apnea made simple: The combo of obstructive and central sleep apnea. You’ve got a little of both.

Complex sleep apnea made (well, not so simple, but for the sake of this explanation) simple: Obstructive sleep apnea (blockage but effort to breathe) WITH “treatment emergent central sleep apnea,” which is where you go to treat the obstructive with the usual treatments, like a PAP machine, but your brain then says, “no thank you” and you develop central sleep apnea instead of responding to the treatment. **This one is pretty rare, much more difficult to treat.

You can guess which one Trent suffers from…

He has complex sleep apnea, of course.  Not only does he have complex sleep apnea, one of the more challenging to treat, but also, his sleep apnea thus far, has not responded to a single attempted treatment. Not one. In 6 years of hard work searching- several surgeries, fine tuning, using a fancy machine (not your regular CPAP/BiPAP), the list goes on and on. Not one treatment has helped. 

The effects of sleep apnea vary based on severity level and from person to person. We have found that some people we know can have mild sleepiness during the day, maybe a headache, some dizziness here and there. Trent is in the severe range. And even calling it severe, I feel is putting it too mildly. His most recent overnight test recorded him as not breathing 53 times per hour. 53 times in a 60 minute window. That’s a whole lot of lost oxygen lost, as those 53 times per hour can range from a matter of a few seconds to almost forty seconds at a time. 

Daily, he suffers from sleep deprivation, severe daytime sleepiness, severe body fatigue, headache, dizziness, brain fog, depression, inability to regulate his emotions, all at a very aggressive level. He has had high blood pressure and is at risk for a heart attack while this goes untreated. He is at risk for organ issues while this goes untreated. His brain is suffering from oxygen deprivation at night and his muscles have difficulty recovering from activity or exercise…when he is able to be active or exercise. It’s not due to a lack of sleep. In fact, Trent will be asleep within minutes of his head hitting the pillow. He sleeps all through the night, every night for hours and hours. On a bad day, he will sleep for upwards of 12-15 hours, sometimes even more. However, because his Complex Sleep Apnea is untreated, he isn’t getting restful, restorative sleep. To put it simply, the one thing we are all taught can heal all: sickness, sore muscles, brain recovery, etc., is the thing that actually damages his body every time he enters an asleep state. 

In the past, we have tried many things and sometimes, we get small moments of relief in doing so. These things would give us somewhat functional days but each time, the results soon dwindle down over time. We have done so many things, surgical, medical, nutritional, holistic, herbal, etc. There is a ton of up and down, day to day. I’m looking forward to sharing more in depth about the surgeries, appointments and steps we have taken here on this blog page. 

For now, we have begun a new treatment venture for his complex sleep apnea- a device called the Inspire Implant. We had the implant surgically implanted into his chest and neck and attached to his tongue motor nerves back in June of 2022. We had it electronically turned on in August of 2022. Yes, literally this thing is implanted into his body forever and they control it with an iPad. More on that later.

To be honest, it’s been a nightmarish four months. We agreed to this implant with the expectation of potentially, “massive, massive results,” (not my words, theirs). We have yet to see this level of a positive outcome. There have been some really high highs the last few months, but compounding this, have been some seriously scary and relentless lows. These lows have resulted in a lot of stress, wear and tear on both mine and Trent’s mental health and just an overall debilitating feeling of fear. Looking ahead, I will break down the current treatment and usage of the implant, as well as previous procedures and treatments we have tried. All while weaving in our relationship and how we cope and manage this on a daily, monthly, and yearly basis.