Well this certainly complicates things

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Expanding on my previous post……..

As if my life isn’t complicated enough, after learning more about this new condition I have called PGS (posterior glottic stenosis), its becoming increasingly apparent that this changes the way in which my severe asthma exacerbations will be treated in the future. It used to be that my biggest fear during a really bad exacerbation was that I would end up with an endotracheal tube down my throat. Now my biggest fear is that they might not able to get one in.

With the size of my airway opening now reduced to about 40% of normal, if I needed to be intubated in the future for asthma ( which I undoubtedly will), it would be difficult to get a normal adult size breathing tube in without causing even more damage. Still, and after discussing this with my Otolaryngologist, depending on the circumstances, regular intubation is not totally off the table. In her opinion it’s still doable, though they would have to use a smaller pediatric size ET tube or perform what they call an “awake fiberoptic intubation“, either through the mouth or nose. I’ve never had a breathing tube insert through my nose while totally awake, but Ive had several laryngoscopies and bronchoscopies done, and while slightly uncomfortable, with proper numbing of the area they’re not painful. However, I also know from working in the field that most critical care clinicians are not too keen on using small ET tubes on their Respiratory patients. Trying to ventilate adult sized lungs through a child sized breathing tube can be tricky. You’re essentially trying to push a large volume of air through a small tube, which can cause turbulence in and higher pressures in the airways. Kinda like narrowing the nozzle on a garden hose. It’s also more difficult to breath and cough through a smaller breathing tube, and its more difficult to pass a suction catheter through one as well. These might be inconsequential concerns in an emergency situation, but they can present real challenges in the long term.

So yes, under optimal conditions and with some modifications I can likely still be intubated. The problem with bad asthma flares however, versus other situations for which people are intubated, is that things can go south really fast, sometimes within minutes. The upper airway can literally clamp shut. Intubating a tight asthmatic, even one without glottic stenosis, is almost always considered an urgent or emergency type procedure. Ideally in my case, the medical staff would know in advance about my compromised airway and Id be closely monitored. But even under the best of circumstances, things don’t always go as planned. If they encounter trouble while trying to get an ET tube in, even a smaller one, they might have to resort to doing an emergency tracheostomy. Obviously, performing a surgical procedure like a tracheostomy in the middle of a bad asthma flare isn’t ideal. Performing a tracheostomy (basically cutting a whole through your neck into your trachea) requires a surgeon, so more than likely they would opt to do it preemptively, which of course is whole other issue. The cruel irony in all this, is that it was probably all the intubations I have had due to my asthma that caused the stenosis in the first place.

To help the above scenario Ive agreed to undergo microsuspension laryngoscopy under general anesthesia, so that the ENT surgeon can better look and feel for what’s going on down there. They can then decide on how best to approach treatment and carry out the various surgical procedures right then and there. There’s no guarantee that any of this will work, but if I do nothing the condition will probably get worse, especially if I have to be intubated again. Here are the actual consult notes from my appointment with the UCSF Otolaryngology team.

With all of this happening so fast, its been hard to get my head wrapped around it all. For the first in my life, there’s the possibility that I might enter a hospital for an asthma attack and walk out with a hole in my neck. Knowing the course that my bad asthma exacerbations usually take and knowing how stubborn I can be in these situations, would I delay seeking hospital care for a bad exacerbation? And if I went to the hospital, would I deliberately push myself too the brink to avoid intubation? Would I flatly refuse it all together? It wouldn’t be the first time. After an incident a few years when I woke up during intubation while still paralyzed. I was so traumatized by the event that I swore I would never allow them to intubate me again . During a subsequent hospitalization for asthma, I actually refused intubation and chose non -invasive ventilation ( BIPAP) instead. I was on that machine for 5 agonizing days and got so fatigued I almost died. Obviously I pulled through, but after that episode I decided to seek psychological counseling to help deal with my fears. After few therapy visits my PTSD improved to the point where I was more comfortable in allowing them to intubate again if needed… which happened not too long after that. But my current situation is much different. This is the first in my life where I actually have a physical blockage in my throat, which automatically makes intubation more difficult. Not sure how Im gonna deal with it if they tell me I need a tracheostomy to save my life.

Im so frustrated. Why can’t I just be a normal asthmatic? Why do I have to experience every weird side effect there is to this crazy disease? If I had “normal” asthma I wouldn’t have to worry about this, because the vast majority of people who suffered from asthma never need intubated for it. Ah, but lucky me, I don’t have typical asthma. I know, poor me, but I also know that Im not alone in dealing with this. Though the condition is rare, the most common cause of acquired PSG is intubation. In fact, it’s estimated that up to 15% of people who are intubated, for whatever reason, will likely develop PGS. I know should be grateful that Ive managed to survive for so long with this disease without needing a tracheostomy, but still, the thought of possibly needing one just adds to my anxiety.

Hopefully, this upcoming surgery will open up my airway enough where tracheostomy will be an option of last resort, rather than the option of first choice.

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