#131

UCSF ICU after extubation 7-1-2017
UCSF ICU
I haven’t written about an asthma hospitalization since my 104th admission back in May of 2011, which by my calculations makes a total of 27 more severe exacerbations requiring hospitalization in just a 6 year period. That’s just plain crazy, which is why Im writing about this topic again.

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.

UCSF Resus room 6-27-2017
Arterial line
Coming in on a holiday weekend , the ER was pretty much empty and I got triaged in less than 5 minutes. Because my sats were still in the 90’s, they put me in a standard room, and started me on the standard 3 x 5mg neb protocol followed by VBGs (venous blood gasses). I did OK the first hour, but because I was doing Q1 nebs at home, they were actually under-dosing me, so I requested that they just put me on a cont neb at 15mg per hour, which they did using the fabulous Aerogen system. The first blood gas came back with a venous PCO2 of 50, which is kinda high when your respiratory rate is in the 40’s. An hour later, it jumped to 59, so they put me on BIPAP with the cont neb inline. At this stage of the game, I was starting to feel crappy. Despite the aggressive and cutting edge therapy, my airways were just too constricted so they gave me some EPI in my right arm ( which hurt like hell) and then moved me to the resuscitation room to keep a closer eye on me. After about an hour in that room it was apparent that I wouldn’t be going home any time soon, so the ICU team came down and did their assessment. Because they’ve dealt with me many times before, it was pretty much a no -brainer. I would be going to the ICU as soon as they could get a bed. I think it was another hour before they actually moved me upstairs, but once I got there, they put an A Line in ( more fun) and drew more gasses. My arterial CO2 was now in the high 6O’s, which basically means that the body cant get rid of CO2 fast enough and you develop what they refer to as “respiratory failure and or status asthmaticus“. It was then that the anesthesiologist came by and assured me that if I needed to be tubed, he would be present or do it himself. Less than an hour later I was on the ventilator and remained on it for 3 days.

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.

Going nuts
Now that’s just part one. Though not as terrifying, part two is just as crazy. Again for some reason , and this is actually more common than you might think, if you’ve been receiving continuous sedation, which is usually the case when you’re intubated for asthma, there can be residual side effects that can cause psychosis and delirium. And wouldnt you know it, I suffer from all the above. Sometimes after they extubate me, I feel fine for a few hours, but then I start getting really paranoid and seeing things. I become convinced that people are out to harm me, so I start demanding for them to send me home, sometimes right from the ICU. Ive even called 911 to report to the police that Im being held against my will. Yup, I get certifiably crazy, but the doctors usually chock it up or label it as ICU psychosis. It’s a thing now, but not a lot is being done to prevent, at least not from my perspective.

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.

Allergies and sedation issues

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.

Back home

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