I don’t remember where (probably in the shower, I do a lot of thinking there), or what made me think of it, but I was thinking about the idea of asthma control and how it related to my asthma during the past year. The first thing that came to mind, is that I hadn’t been intubated in over 6 months. Not how many bad breathing days or the number of exacerbations Id had, or the amount of medications I’d used, or the number of contacts that I had with my doctors, but the date of my last intubation. Hurray for me for not being intubated for 6 full months, but if that’s the only yardstick I have in which to measure my asthma control, then surely my way of thinking about asthma control and asthma exacerbations in general, is much different than others living with this disease.
For those unafflicted or not familiar with the lingo, an asthma “flare up” is when your symptoms start up or get worse as compared to your usual or baseline.(Those last words are key). Flare ups can happen quite quickly too (e.g. if you are exposed to smoke or some other irritant),but they can also come on gradually over hours or even days (e.g. if you get a cold or are stressed out). Flare ups or exacerbations happen when the airways become swollen and inflamed. The muscles surrounding the airways contract and also produce extra mucus, causing your breathing tubes to become narrow. Btw, while the term that people use to describe asthma episodes like “Asthma exacerbation”,”Asthma flare up” or “Asthma attack” are interchangeable, I tend to differentiate those terms by severity and quality. To me an asthma flare is a milder and/or slower onset type of exacerbation, whereas as an “Asthma attack”, which denotes a sense of urgency and is more episodic in nature and tends to be more severe. In any case, most of these episodes can usually be treated and reversed with quick acting inhaled medications like Albuterol, but not always. Sometimes the breathing passages become so constricted and swollen that oral steroids like prednisone are needed. The problem is, those can take several hours to kick in, which is not a good thing when you’re struggling to breath, but that’s a whole nuther story.
As to asthma control, because this disease has permanently damaged my lungs, Im breathless to some degree all pretty much all the time. So when my symptoms ramp up or worsen, it doesn’t really register in my brain as a a full blown exacerbation. Im so used to the constant flux in the quality of my breathing(which literally changes by the hour), that for the most part I ignore the minor flare ups and chalk them up as more of a nuisance than something I need to act on. It’s not till I get really sick, sometimes to the point where I’m literally gasping for air and need some kind of emergency intervention to prevent me from dying, that it dawns on me….. Oh shit, I’m having a severe attack!
Hence, the only real reference point or reminder I have of my asthma control, are the intervals between hospitalizations or intubations.
To complicate matters, over decades of living with this condition and having frequent exacerbations, I seem to have developed a blunted perception of my dyspnea, what Pulmonary specialists refer to as an under or “poor perceiver“. This means that I have somewhat of an unusually high tolerance for breathing discomfort and don’t always accurately perceive the severity of my symptoms, ie breathlessness, until its too late. Paradoxically, when I get stressed out or anxious about my breathing, I sometimes become an “over perceiver” which makes my breathing even worse.
I suppose the real question is, how do you define asthma exacerbations and asthma control when your baseline lung function and your day to day symptoms are always abnormal. Despite doing everything you’re supposed to, medication compliance and trigger avoidance wise, you’re never able to maintain your green zone for extended periods. You’re basically in a constant state of semi exacerbating…. what I call asthma purgatory. This is why the question of asthma control, which comes up a lot in research circles and patient questionnaires, is always so difficult for me to answer. Do I go by the GINA definition of controlled asthma, which would definitely label me as “uncontrolled” or do I base it on how Ive been feeling since my last severe exacerbation or Hospitalization? Does the fact that I’ve been breathing better than I usually do for an X number of days, mean that my asthma is controlled? I guess it’s all relative. But still, Id like to think that as fleeting as those good breathing times might be, I do achieve at least some occasional asthma control. It’s just that my indicators are different than the accepted scientific ones.
With at least 150 severe exacerbations over the course of my lifetime, including an estimated 50 near-fatal ones, I don’t take anything in this life for granted. And even at the age of 67, I continue to strive for that elusive state of control. The ultimate goal for me would be to achieve a high degree of control for a full year. I would gladly trade-in any remaining years I might have in this life, in exchange for one good one. I would love to see what it feels like to breath without effort and experience simple pleasures like a good night’s sleep or eating whatever I want, or the ability to run instead of walk. Ah, one can dream, right?
Fortunately, I’m an anomaly, and outlier in the asthma world. The fact is, only a small subset of the asthma population has a severe form of the disease, and even fewer fall into my category of very severe asthma. The vast majority of asthmatics can achieve FULL control, maintain normal lung function, and live normal lives by following a few simple steps.
1) Learn all you can about your particular kind of asthma. Mild, Moderate, Severe. Allergic, Non Allergic, etc.
2) Find an experienced asthma clinician that you clique with. One who understands you, one who has your best interest at heart.
3) Take your medications as prescribed and avoid triggers.
4) Try to maintain a healthy life style, and include exercise as part of it.
5) Develop an asthma action plan and stick to it.
6) If your medications or treatment plan isn’t cutting it, talk to your caregiver about trying something different.
7) If you fail or end up in the hospital, learn what went wrong. Recover and then jump back in to the ring.
8) If you can, give back by participating in research studies and/or advocate for better and treatment and asthma awareness.
As for me, Im hoping the current Biologic I’m on Fasenra (Benralizumab), will at least smooth out some of my more severe flare ups and perhaps even help me reduce the need for such frequent hospital care. If not, Ill ask to try Tezapire (Tezepelumab) when it becomes available.