Expanding on my previous post……..

Post bronchoscopy. You can see my vocal cords on the screen

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 flare was that I would end up with an endotracheal tube down my throat. Now my biggest fear is that they might not be able to get one in.

Following my initial dilation procedure 5 weeks ago, the size of my airway opening is slightly larger, but its still only about 40-50% of normal. If I needed to be intubated in the future for my asthma (which I undoubtedly will), it would be difficult to get a normal adult size breathing tube in without causing even more damage. Still, after discussing this with my Otolaryngologist, and 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 inserted through my nose while totally awake, but Ive had several laryngoscopies and bronchoscopies via the nose, and while slightly uncomfortable, with proper numbing of the area they’re not painful. However, I also know from working in the field as an RT 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 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 for critical care clinicians and respiratory therapists.

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’s the actual report from my Otolaryngologist.

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.

STATUS UPDATE : On March 1st, I had a 2nd successful dilation surgery. The back of my throat was a little more bruised this time, but has since healed. My voice remained strong until March 25th, now I’m loosing it again. Im still able to breath in OK, but will need a 3rd surgery in the near future.

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2 thoughts on “Well this certainly complicates things

  1. Hi Stephen, I’m sorry to hear about what you’re going through, and just want to be a friendly voice to support you during this time. I trust you’ll make the right decision for yourself if and when you have to cross that bridge. You have been an absolute inspiration to me, as someone who thought my life would be over when I was diagnosed with asthma at 27, and suddenly couldn’t do the physical activities I was used to. It was summertime, and I was stuck in my apartment tripping out on 60 of prednisone and doing 4 neb treatments a day while my friends were out playing softball and otherwise enjoying their lives, or whatever. Now I’m 31, and in the past 2 years, I was also diagnosed with lupus—you just never know what life is going to throw at you. But hey, I’m still here. Even though my asthma isn’t as severe as yours, perhaps I can offer an analogy. I have extremely small veins, and frequently require a pediatric needle for IV treatments when I’m hospitalized, which has happened on average about once or twice a year. The sympathetic nurses have done it grudgingly, but it also spares me the pain of having a vein blown out. As with the pediatric breathing tube, there are advantages and disadvantages. If they need to use a pediatric tube on you, they’ll do it—they’ll figure out a way. And if they have to do a trach, they’ll do it. Knowing everything that you do about this disease and its treatment, you’ll be able to make an informed decision either way, if and when the time comes. Stay strong. 🙂

  2. Hi Holly,

    Thank you for taking the time to write such a kind and thoughtful letter. Yeah, health problems are the pitts, but we find ways to adapt.

    I’m wondering if a venous access port would work better for you than pediatric needles? I got my port 7 years ago and I cant tell you how much I love it. No more torture or pissed off Nurses trying to get an IV in. It has to be flushed with heparin every 4-6 weeks at an infusion center, but totally worth the hassle.

    The main reason I wrote these posts about glottic stenosis is two-fold. First, is my personal fears and anxiety, which I’m sure is at least partially fueled by what Ive seen working as a Respiratory Therapist. And second, to bring about public awareness of yet another crazy side effect of asthma. Actually, its the direct consequence of a procedure used to save the life of a person in respiratory failure, in this case, endotracheal intubation. My guess is that most asthmatics don’t know that intubation carries this kind of risk.

    Good, bad, exciting or scary, we do what we gotta do to keep going, right?

    I hope your asthma is stable at the moment and that you wont need an IV for a while.

    Xx
    Steve

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