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 the changing ways in which my asthma manifests itself.

Like many inflammatory diseases, asthma symptoms tends to be 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 began to show a notable decline. Now in my 62nd year of living with this disease, my asthma has morphed once again, but this time in a rather scary way. The history of my asthma 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. To make things worse, lets just say that my home environment wasn’t really conducive for someone with breathing issues. I had the type of asthma where some sort of internal or external trigger would start me wheezing and that would sometimes escalate into to a full blown attack. Despite having pretty bad asthma with many ER visits and hospitalizations, I survived childhood pretty much unscathed, probably because my lungs were still young and healthy. I sailed through my young adult years pretty much the same way. My asthma was firmly planted, but unless I was actively flaring it didn’t really slow me down.

The first major change:

I think it was sometime in my late 30’s or early 40’s that I first noticed that something about my asthma was changing. Instead of having the occasional really bad flare ups with relatively good breathing periods in between like I did when I was younger, now I was experiencing less frequent bad flare ups ( hospital bad), 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. For some reason my lungs wouldn’t clamp down fast like they use to. I was still having major flare ups, but when they happened it was more of a slow and gradual build up. Back then I actually stopped referring to the really bad exacerbations as “attacks” because the word attack denotes a sense of suddenness or urgency, and that just wasn’t 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 my flare ups, sometimes I wouldn’t realize just how bad my breathing was getting until I literally couldnt breath at all. Perhaps over the years my body was able to adapt to a higher level of breathing discomfort, and unless things 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 my 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, despite the poor perception of my symptoms. Her belief was 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, was probably a little less in someone like me. In other words your basically “Bad” all of the time she said, which probably makes it easier for your body to adapt to. Makes total sens,e 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:

Fast forward to early 2016 or thereabouts, when my asthma decided to change again. Dont know what the impetus is for this latest version, but it seems to have made somewhat of U turn from the previous. My exacerbations have changed from a relatively slow onset type to hair-trigger fast. My asthma flares are back to being more acute and sudden in nature. It’s as if the asthma component of my disease has over taken the COPD component. No more subtle changes or hints in my breathing 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 now. Im basically a walking time bomb. I feel like Im constantly walking a tight rope trying to keep my balance so that I dont fall off the proverbial asthma cliff. Something else that Ive noticed, is that when my small(or larger) airways start to spasm or get clogged for any reason, I notice the sensation almost immediately. This is a complete 360 from the way it was before, but is actually a good thing because it forces to take action right away instead procrastinating. My symptoms escalate so quickly and get so intense now that I have to carry epinephrine with me all the time just in case in the inhaler doesn’t cut it. To make things worse, they’re forecasting one of the worst allergy seasons ever here in Northern California where I live.

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% now after inhaling bronchodilators. As a result, I have absolutely no wiggle room or reserve. If my airways react to something, even in the slightest way, they close up and I can’t breath …it’s as simple as that. Talk about nerve racking. Needless to say, I have to really be on top of my game more than ever now.

Hey, I have an idea. How about if my asthma morphs itself right out of existence? Wouldn’t that be awesome.

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8 thoughts on “My asthma has changed again

  1. Earache says:

    Stephen you are the most articulate person on the Internet expounding on what is rarely taught or expressed in office visits, namely the detailed natural course of progressive asthma through the eyes and sensitive intellect of a patient and respiratory therapist. I am an Internist who developed asthma late in life (55) and finding it morph into some of the patterns you have described. I hope your off label- tryout of the new biologic you have recently described works well. You are a bescon in a murky field where new approaches are just being heralded but too quietly for the majority of asthmatics who are afflicted. I look forward to all of your blogs and posts and hope you can continue to use your indomitable willpower to keep on fighting and giving more hope and insights and chances through the laser focus of your compassionate and ever focused musings!!! Your a hero to very many that you could not imagine!!??????

    1. John C Lavigne says:

      This has to be the most concise description of what is going on with me. I am posting this at the hospital after staying here for three days with the full treatments
      My question is why have I not been told this about my airways not being able to expand after the breath in. My story mirrors the author of this blog and I would like to stay in touch with him
      My # is 7818669704 best to just leave a message and I will return the call

      1. Thank you for writing. My name is Steve, Im the author of ALL of these posts. Im afraid I don’t understand your question about your airways not being able to expand. Unfortunately, I can’t call, but feel free to email me at breathinstephen@gmail.com Take care

    2. How very kind of you for those words, you made my day. Im sorry to hear that you developed asthma so late in life. As you probably know , there’s a large subset of asthma labeled “adult onset” where people are developing asthma in their 40s and 50. People in that group tend to have more severe disease. I hope you are receiving the care you need.

      Regarding the Dupilumab ( IL 4-Il 13 blocker) , unfortunately it didn’t work for me. After the 3rd month of biweekly injections, I started to develop some kind of serum sickness ( I felt like I had the flu all the time),so we decided to stop the drug. In the meantime, Im on my 5th month of macrolide therapy with Azithromycin 500mg 3 days per week. Still too early to tell if its helping, but the most recent study on the subject is encouraging.

      Thank you again for reaching out. I hope your managing ok with your asthma.

      Xx Steve

      Take care xx

  2. How very kind of you for those words, you made my day. Im sorry to hear that you developed asthma so late in life, must have been a shock. I know you’re a physician, but if I can help in anyway feel free. I’ll be sure to write about my experience with the Dupilumab, if and when I start the injections ( lot of red tape)

    Take care xx

  3. Britta says:

    Hi Steve, I just came across your blog, and really am grateful for your posting about your severe asthma. It makes me realise I am not alone, although you have been dealing with this for such a long time! I am sorry you have had such a tough road, and hope the Dupilumab works for you. I developed asthma about 2 years ago at age 49, and have been a bit shocked by it! I practice Chinese Medicine, but to my dismay nothing I did could make even a dent in how I felt – my level of eosinophilic inflammation was so severe. In those two years I noticed changes in the nature of my symptoms. I am researching everything I can so I can help myself and perhaps others too. So far the best thing for me has been the Buteyko Method – it gave me back a sense of control and I can stop acute symptoms if I catch them immediately. Wishing you the very best, Britta xx

    1. There are several new biologics on the marker that specifically treat eosinophilic asthma. You might want to look into that. Thank you for writing.

  4. Mary Abbott says:

    Humidity will trigger my asthma. Ended up in the ER last year because of this. 2 hospital days also. Severe cold weather sets it off also. Blessings to you. I just found this article and I will continue reading . I am on Flovent, serevent and spiriva. Mary Abbott

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