This particular stint was shorter than most, but not because I wasn’t as sick as usual, but rather because I hate being hospitalized and will apparently say or do anything to leave the hospital before the doctors think Im ready.
First off, if you’ve never been hospitalized for asthma, it’s never a tolerable or even semi tolerable affair. It’s more an option of last resort. An uncomfortable necessity if you will. The Doctors and Nurses are nice enough, but the treatment for severe asthma can be very invasive, painful and downright traumatizing. Then there’s the mental part when you’re body is trying to suffocate you and you never really know from minute to minute how things are going to turn out. You hang on and do your best not to give in to the associated anxiety or dread. It’s basically a waiting game to see how long your lungs are going to hold you hostage.
The medical staff are at your bedside cheering you on the best way they know how, but sometimes you can read between the lines and sense the concern that they really have. Is this dude gonna end up on a vent, is he gonna die? No one wants to start a shift that way. Finally there’s the sedation issues, which I’ll talk in more detail later. It really has changed my perspective on the way my asthma is treated in the hospital setting.
So as I mentioned, this flare started like most, the pollen counts were high and air quality poor in the days leading up. This always causes me problems. Even if I lock myself in the house, if the outside environment is bad, it will affect my breathing. After about 2 days of not feeling right ( ie peak flows and sats bouncing around), I bolused myself with 60mg pred and kicked up the frequency of my neb treatments to correspond with my symptoms, which at the time was about every hour or so. The line in the sand for me as far as going to the ER, is when I dont see significant relief after being on high dose steroids for 48 hours. Day 4 came with no relief,so I went in.
So this is where the sedation issue usually surfaces. It doesn’t happen with every intubation, but the frequency at which it occurs has gone up dramatically over the past 2 years. For me its actually a series of events that begins with me waking up while still being paralyzed from the paralytic drug they use, and then ends up with me becoming psychotic after being extubated a couple days later. Let me see if I can explain this better;
In order to put an endotracheal tube into the windpipe of a tight asthmatic, they have to administer a drug that temporarily paralyses all the muscles in the body, except for the heart. At the same time, they give a strong but short acting sedative, such as propofol that puts you to sleep ( at least that’s whats supposed to happen). Well in my case, the sedative works initially, but then stops working. Even though the sedative is being continuously infused, for some reason after the ET tube is inserted into my airway, which takes less than a minute, I wake up, but my body is totally paralyzed and I cant move a muscle to alert anyone. I can hear and feel everything, but can’t react at all. When I say paralyzed, the feeling is more like having 5,000 lbs of weight on top of you. You can’t even initiate the beginning sequence of a movement. All you can do is mentally try to move a muscle. I know it sounds confusing, but that’s the sensation you feel when a paralytic drug is in your system. Thankfully, the amount of drug they give you dissipates rapidly, something like 6-8 minutes, but if you’re awake during those few minutes, it can seem like an eternity. Actually, more like a living hell.
Ah, but here’s a bit of good news, a caring doctor went back and reviewed my intubation and resulting PTSD history, and while he doesnt know for sure which drug combination is causing the intubation sedation problem, he’s actually come up with what I consider a very clever way to help with the situation. Since I don’t have sedation issues with every intubation, as a pro-active measure, he’s recommending that the next time I get intubated that after they induce the paralytic drug, that they use a reversing agent immediately afterwards to reverse the paralysis. At least that way I could signal to someone by moving a a finger or toe if I woke up during sedation. I think it’s a brilliant idea. As far as the psychosis, it’s probably a combination of high dose steroids interacting with one of the opiates and just a general sense of hopelessness and frustration from going though this so often. Seriously, I think even the strongest person would have issues if they were intubated 35 times for the same disease.

So getting back to why this exacerbation/hospitalization was quicker than most, there’s your answer. I was out of my mind screaming and hollering for them to cut me loose. Had I gone with the flow, I would probably still be there. It took a full day of bargaining, but I got my wish and was discharged one day after being extubated. I was breathing a lot better as well, which is what it’s all about.
Postscript: I got word on July 3rd that UCSF has the Dupilumab in their possession and that it will be a reality for me sooner than later. Im still exacerbating so they cant give it to me right now, but hopefully by my next clinic appt. If this new drug can save me from even one less intubation per year, I’ll be forever grateful.
