My asthma has changed again

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I’m not talking about the disease itself, I still have the classic text book definition of asthma, maybe even to a greater degree than many, what I’m referring to is how my asthma manifests itself now.

Like many inflammatory diseases, asthma tends to be a cyclic in nature, where you have periods of good breathing mixed with periods of bad breathing, ie. the occasional flare up or exacerbation. Thankfully, in most cases the good days out number the bad, and for the first 20 or 30 years of my life that was pretty much my situation too. But as my asthma became more chronic and more resistant to treatment, it took on more of a COPD appearance. Those changes were also reflected in my PFTs, which showed a notable decline. Now in my 62nd year of living with this disease, my asthma has morphed once again, and not in a good way. The history of my symptoms goes something like this……

Like most boys with asthma, I developed mine in early childhood. I was a pale, skinny kid who was allergic to almost everything under the sun. I had the type of asthma where some sort of trigger would start me wheezing and that would sometimes escalate into to a pretty nasty attack. On average, I was in the ER or hospital maybe twice a year. Without getting into the family dynamics, lets just say that my home environment wasn’t really conducive for someone with bad asthma and allergies. Despite having really bad asthma,I survived childhood pretty much unscathed, probably because my lungs were still young and healthy. I sailed through young adult year pretty much the same way. My asthma was still present, but unless I was actively flaring, it didn’t really slow me down.

The first major change:

It was sometime in my late 30’s or early 40’s that I noticed that something about my asthma changing. Instead of having the occasional really bad flare ups with relatively good breathing in between like I did when I was younger, now I was experiencing less frequent bad flare ups, but I had some level of uncomfortable symptoms virtually all the time . But even with these more persistent symptoms, I seemed to have a better sense of control over my asthma in general. The unpredictability or fear factor component of asthma which affected me a lot when I was younger, seemed to disappear. After about the age 40 I stopped having the sudden out- of- the- blue kind of attacks like I had when I was a kid. For some reason my lungs werent clamping down as fast like they use to. I was still having major flare ups, but when it happened it was more of a slow and gradual build up. In fact, back then I stopped calling really bad exacerbations as “attacks” because the word to me the word “attacks” denotes a sense of suddenness or urgency, and that just wasnt happening anymore. But that’s not all that changed with this first morphing of my asthma. While my exacerbations seem to come on much slower than previously, my awareness of my symptoms seemed to be more blunted. Despite the slower onset of these flare ups,some times I wouldn’t realize just how bad my breathing was getting until I literally couldnt breath. Perhaps over the year, my was able to adapt to a higher level of breathing discomforted, and unless it got really bad I just ignored it. Of course we know now that the inability to accurately perceive changes in ones own breathing pattern is not always a good thing. If you don’t realize you’re getting sick, you miss the opportunity to take any useful action. I can’t tell you how many times I misjudged how sick I was, only to end up on a ventilator fighting for me life.

In 2009 when I was being evaluated for SARP, I remember asking Dr Wenzel how it was that I managed to do better than most people with very severe asthma. She said something to the effect, that because I had lost a lot of the “twitchiness” in my large airways ( due to scarring), that the wild up and down swings usually seen in people with highly reactive airways, is probably a less in someone like me. She said… in other words your basically “Bad” all of the time, which probably makes it easier for your body to adapt to. Makes total sense and what’s more, Knowingly or unknowingly, she was describing some of distinguishing features of asthma vs ACOS (Asthma/COPD overlap syndrome) 5 years before ACOS was even a thing.

The 2nd major change in my asthma:

Fast forward to early 2016 or thereabouts, when my asthma decided to change again. Dont know what the impetus is for this latest incarnation in the way my asthma manifests itself, but it seems to have a made somewhat of U turn. My exacerbations have changed from a slow onset of symptoms to a hair-trigger fast onset. It’s as if the asthma component of my disease has over taken the COPD component. My asthma flares are back to being more acute and sudden in nature, but this time with a vengeance. No more subtle changes or hints that things are heading south, now my airways clamp up at the drop of a hat with no warning at all. In fact, Ive re-introduced the term “attack” back into my asthma vocabulary because I tighten up so quickly. Im basically a walking time bomb now with an unknown timer.I feel like Im constantly walking a tight rope trying to keep my balance. Nowadays when my small(or larger) airways start to spasm or get clogged for any reason, I notice the sensation almost immediately, which is good I guess. But If I dont take some kind of action right away, things get out of control much faster then they used to. So quickly in fact that I now carry epinephrine with me all the time just in case Im unable to control the symptoms with inhaled meds.

Im pretty sure this latest morphing of my asthma is due to my crappy PFTs, which of course was caused my chronic asthma to begin with. My FEV1 rarely goes above the 30% after inhaling bronchodilators anymore, so as a result I have absolutely no wiggle room. If my airways react to something, even in the slightest way, they close up and I can’t breath at all…it’s as simple as that. Talk about nerve racking. As a result I have to really be on my game now.

I know, how about if my asthma morphs itself right out of existence? Sounds good to me.

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