Steve Asthma

We all have stories about our asthma, how it began, and the impact it has had on our lives. Here’s a re-post of a personal story I wrote a couple of years back.

Ever have a visit with your asthma doctor only to hear them say, “I’m afraid we don’t have anything new to offer you,” or, “We’ve never come across a case as complex as yours,” or, “We’re not sure how to classify your type of asthma”? I’ve heard all of these. So, for those of us for whom they’ve yet to identify a specific phenotype, just name your asthma after yourself. “[Insert first name here]-asthma,” or as my pulmonologist calls mine, “Steve Asthma.”

It seems like I’ve lived with this disease forever, but according to some old medical records I recently found, it wasn’t until 1963, at the ripe old age of 9, that I was officially diagnosed with asthma. Prior to that, I don’t think anyone really knew what was causing my wheezing and shortness of breath. The pediatric lung doctor who diagnosed me initially thought I might have cystic fibrosis, but after a negative sweat test, extensive allergy testing, spirometry, and a very reactive methacholine challenge test, it was determined that I indeed had extrinsic or allergic asthma.

My home life at the time wasn’t the best. I come from a poor, dysfunctional, and medically indigent family. My stepfather, who entered my life at age 5, was an abusive alcoholic who could rarely hold down a job, let alone support six children (four of his own plus my brother and me). What little medical care we received growing up came mostly through the county’s social services system. Looking back, with the exception of the clinic visit for my asthma diagnosis, the only other time I remember seeing a doctor was when I was in the hospital. To make things worse, the rented house we lived in during our pre-teen years was infested with cockroaches, for which my stepfather would use copious amounts of insecticide sprays on a weekly basis in order to control them. Yeah, that’s really good for an asthmatic kid.

Okay, lots of poor kids have asthma. The thing is, this was the early 1960s, and while there was a basic understanding of what asthma was, the significance of the disease was always downplayed. I think because no one really had a clue what caused it or the best way to manage it. The concept of airway inflammation and phenotypes was still decades away. At that time, asthma was characterized as more of a nuisance affliction than a bona fide medical disease. Some people, including many physicians, believed that the disease was psychosomatic in nature and brought on entirely by emotions and stress. It wasn’t considered a serious or life-threatening illness. I can vividly remember an occasion when I was about 12 years old. I was crying and scared because I couldn’t breathe. Trying her best to console me, my mother said, “Calm down, Stephen, nobody ever died from asthma.” Actually, Mom, 4,326 people DID die of asthma in the US that year.

From the ages of 10 to 17, I treated my almost daily chest tightness and wheezing with over-the-counter drugs like Primatene Mist, which my friends would shoplift for me because I had no other way to get it. (I love this TV commercial from 1968). Hey, it was a wonder drug back then, and I used tons of it for many years. It saved me from many hospital stays and probably saved my life a few times. That said, it also killed a few people who apparently took too much of it. Primatene was eventually banned in 2011, not for being dangerous, but for having an ozone-depleting propellant in it (CFCs). Eight years later, they reformulated it, and it’s now back on store shelves.

My stepfather, who also had asthma, had his own Primatene inhaler, but in order for me to use it, I’d have to wait until he came home, usually when the bars closed at 2 a.m. About once or twice a year, my exacerbations would become more intense and more prolonged, requiring more than just a few puffs of Primatene. Because we didn’t have medical insurance, a reliable car, or even a telephone, when I got really sick with my asthma, my stepfather, if he was home, would give me shots of whiskey in hopes that it would make me drunk enough to forget about my breathing. Usually, it just made me puke, and I would still wheeze.

Now you might be thinking, what an odd way to treat a child’s asthma flare. But medical access and poverty aside, this was a time when being treated for asthma, even for severe asthma, in a hospital setting was rare. I think partly because no one really thought you could get critically ill from an asthma attack. This was also a time when a lot of people still smoked cigarettes. Doctors smoked, nurses smoked, patients smoked, everyone seemed to smoke. Apparently, it hadn’t sunk in yet that smoking caused more than just lung cancer. I guess it’s not surprising then that there was really no public education about asthma, its prevention, and/or treatment.

Another reason you didn’t see a lot of people in the hospital with asthma was because the treatment was often worse than the attack itself. We’re talking about drugs that would cause major nausea, vomiting, diarrhea, heart palpitations, headaches…you name it. Drugs like Tedral, which is a concoction of theophylline, ephedrine, and phenobarbital, and various syrups that contained methylxanthines like Quibron or aminophylline (nasty stuff). The more targeted beta-adrenergic drugs like Bronkosol (isoetharine), Alupent (metaproterenol), and albuterol didn’t come on the scene until the early ’70s. About the only other meds we had back then that we still use today are prednisone and various methylxanthine drugs like theophylline. Though theophylline seems to be more popular in the UK these days than over here.

is as weird as it is, and thats why they call it Steve asthma.
Here’s your edited post for grammar and flow:

Anyway, barring the craziness at home, health-wise I pretty much had a “normal” childhood. I played and ran around outside like most kids did at the time, and except for periodic flare-ups and the need for an occasional hit off the inhaler, I dealt with my shortness of breath and wheezing pretty much the way most kids do…they just deal with it. Ah, but at age 15, that all changed. I suffered a very severe exacerbation that not only landed me in the hospital but almost took my life. Apparently, the Primatene Mist and shots of whiskey weren’t enough to treat Steve asthma.

This particular flare came on suddenly and didn’t respond to multiple hits of the Primatene Mist. I remember being so short of breath that night that I would sit on my bed, legs crossed, and rock back and forth, moaning with each breath. Without knowing it, I was actually purse-lipping, which would slow my breathing down and allow more time to exhale the air out of my lungs. This went on for about half an hour until my stepfather came into the room complaining about all the noise I was making. I told him I couldn’t breathe. He then called my mom into the room and said, “Your son doesn’t look right, I’m gonna take him to the emergency room.” That’s pretty much all I remember until I woke up in the hospital with a doctor yelling at me, saying, “Why did you wait so long to come in?” Turns out I had a full-blown respiratory arrest. Apparently, I stopped breathing in an elevator while being transported to the X-ray department. It’s unclear if my heart stopped completely, but they did do CPR and chest compressions, which fractured one of my ribs. I was intubated and spent a couple of days in the pediatric ICU and was eventually sent home. Interestingly, I was in a private hospital this time, not the county one where I would typically go. This was also way before the invention of “911,” so to their merit, I’m guessing my parents took me to the nearest hospital. I survived the ordeal physically intact, but the circumstances of that hospitalization left a lasting impression on me. To this day, deep down inside, I sometimes still blame myself for having asthma. As for the mean doctor who yelled at me, in retrospect, he was probably just a little grumpy from being called in during the middle of the night to deal with me.

Entering adulthood in the mid-1970s and beginning to earn a living on my own, I soon began searching out doctors who specialized in asthma. Up until then, I had actually never had a personal doctor. Well, leave it to me to pick a quack. I went to this guy who prescribed massive quantities of theophylline for me, which again, was a popular therapy at the time. However, this particular doctor believed you had to administer high concentrations of the drug for it to be effective. Not knowing any better, I figured, what the heck. Wow, I can still recall the nausea, tremors, and feeling like my heart was pounding out of my chest for days after each injection. After three months of running around with toxic levels of theophylline in my system, I’d had enough and stopped the treatment. Needless to say, I wasn’t one of those patients who were “cured” by the “injections.” But what’s truly amazing about this story is that some 30 years later, the skeptical UCSF physician featured in that video, Dr. Lazarus, would become my future pulmonologist. Stranger yet, I actually found this video of Dr. Robbins in 2009, AFTER I met Dr. Lazarus. We both had a good laugh after watching the video together. Dr. Lazarus was, and is, an authority on severe asthma, and I’m happy to say that he’s been one of my favorite and most trusted pulmonologists for almost 20 years now.

Following the theophylline escapades of my late teens, my 20s and 30s were much better and probably the best breathing years of my life. I still had bad asthma and was pretty much steroid-dependent, but whether it had to do with better medical care or the advent of the new inhaled steroids, I managed to skate by with only one hospitalization per year on average. It was also during that time that I went to RT school. Curiously, it was actually my asthma that helped finance my RT education (more about that here). It wasn’t until my early 40s that I noticed a distinct change in my asthma. I remember participating in a respiratory education fair for the public that my employer, Kaiser Hospital, had put on. We had a table set up where we were doing free pulmonary function screening (spirometry). As I’m demonstrating how the procedure is done, to my total amazement and shock, the best FEV1 I was able to achieve was only 44%. My other numbers were low as well. At first, I thought it was a fluke. Maybe I was having a bad breathing day and didn’t realize it. Well, I followed up a couple of weeks later by doing complete PFTs in the hospital’s PFT lab. The results were unchanged. My numbers indicated that I had a severe obstructive airway defect and that the obstruction was probably permanent. I think it was at that point that I started taking my asthma more seriously.

As I reached my early 40s, I noticed a pivotal change in the severity and nature of my asthma. My exacerbations seemed to take on a different form and pace. Rather than coming on suddenly with an identifiable trigger, my exacerbations seemed to begin less intensely but then get gradually worse over the course of several days instead of hours. I noticed also that I didn’t wheeze as much when I was flaring and that I was much more conscious of my effort to exhale. I think this is when I first became aware that the sensation of air-trapping (essentially the inability to exhale easily) was contributing to my distressful symptoms. My dyspnea, though relatively mild and tolerable when I wasn’t flaring, seemed to be present to some degree all the time now. This was probably the transition point where my asthma crossed over from “classic” or pure asthma, albeit severe, to more of a less well-defined chronic obstructive lung condition. I had lost much of the twitchiness or spasming of the upper airways that you normally see in asthmatics when they flare, which was often reflected in lower peak airway pressure when I was placed on a ventilator during bad attacks. Most of the action seems to have moved down to my medium to smaller airways. Unlike classic COPD or emphysema, however, my alveoli (where oxygen and carbon dioxide are exchanged) seemed to be intact as evidenced by normal diffusion studies.

Throughout the rest of my 40s and into my 50s, my asthma, or whatever the heck it had morphed into, was getting worse. I was short of breath all the time now and was exacerbating more often. The standard interventions and therapies weren’t working anymore, and I found myself waking up on a ventilator more and more often. Things got so bad that I had to quit working full-time and eventually retired altogether.

Which brings us back to the title of this post. What exactly is Steve asthma? We’re still trying to figure that one out. Over the last 20 years, I’ve been poked, prodded, and scanned with every diagnostic tool available and was even evaluated for a lung transplant. I’ve had some of the world’s best severe asthma specialists examine my case, only to scratch their heads. My asthma doesn’t behave the way asthma usually does, nor do my exacerbations. Unlike most asthmatics who might suffer the occasional severe attack, end up in ICU or on a ventilator, and then have a very protracted recovery period with lots of setbacks, I tend to get critically ill several times a year, end up on a ventilator, but then recover quickly. It just doesn’t happen that way usually. Something different is going on.

There’s no question that I started out life with asthma. Did decades of frequent and often serious exacerbations cause so much damage to my lungs that my regular asthma morphed into some kind of hybrid super asthma? Is it possible I have something other than, or in addition to, asthma? Your guess is as good as everyone else’s.h lots of set backs, I tend to get critically ill several times a year, end up on a ventilator, but then recover quickly. It just doesn’t happen that way usually. Something different is going on.

There’s no question that I started out life with asthma. Did decades of frequent and often serious exacerbations cause so much damage to my lungs that my regular asthma morphed into some kind of hybrid super asthma? Is it possible I have something other than, or in addition to asthma? Your guess is as good as everyone elses.

One of the theories that’s been floated the past couple of years, is that along with asthma, I also have some kind of yet to be identified, small airway disease. Perhaps Bronchiolitis Obliterans, but in a slowly developing form. Because asthma and BO share a lot of the same symptoms, it can be really tough to tell what condition is acting up. Interestingly, if you read the literature, with Bronchiolitis Obliterans there’s usually a lot of coughing and problems with oxygenation. I have neither of those symptoms. Complicating matters further, I also have reoccurring posterior glottic stenosis, caused by so many intubations. To date, Ive had 4 dilation surgeries to correct the problem. When the space between my vocal cords ( the glottic), is fully dilated I have no problems. But when the scar tissue starts to reform and grow back, I experience increased shortness of breath and wheezing on inhalation, especially when I exert myself. Just like with bronchiolitis, glottic stenosis also shares a lot of the same symptoms and can mimic, mask or even complicate asthma. As you can see, just trying to figure out which condition, or combinations of conditions is acting up at any given time is a challenge.

The long and short of it, is that no one really knows why my asthma is as weird as it is, and thats why they call it Steve asthma.