Ever have a visit with your asthma doctor only to hear them say…Im afraid we dont have anything new to offer you”, or … ” Weve never come across a case as complex as yours”, or ..”We’re not sure how to classify your type of asthma”. Ive heard all of these. So, for those of us you for whom theyve 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”.

Seems like Ive lived with this disease forever, but according to some old medical records I recently found, I wasn’t until 1963 at the ripe old age of 9 that I officially diagnosed with asthma. Prior to that, I dont 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 wasnt 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 6 children (4 of his own plus my brother and I). 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 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.

Ok, lots of poor kids have asthma. 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 illness. I can vividly remember an occasion when I was about 10 years old where I was crying and scared because I couldn’t breath. Trying her best to console me, my mother said… ” Calm down Stephen, nobody ever died from asthma.” Actually Mom, 4326 people DID die of asthma that year.

Between the ages of 10 and 17, I treated my almost daily chest tightness and wheezing with over- the -counter drugs like Primatine 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 stay and probably saved my life a few times. That said, it also killed a few people who apparently took too much of it. Primatine was eventually banned in 2011, not for being dangerous, but for having an ozone depleting propelent in it (CFCs). 8 years later they reformulated it and now its back in stores. My stepfather, who also had asthma, had his own own inhaler, but in order for me to use it Id have to wait until he came home, usually when the bars closed at 2am. About once or twice a year, my exacerbations would become more intense and more prolonged, requiring more than just a few puffs of Primatine. 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 homw, 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 its not surprising then that there was really no public education about asthma, it’s 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 Methyl Xanthines like Quibron or Aminophylline ( nasty stuff). The more targeted Beta Adrenergic drugs like Bronkosol(Isoetharine), Alupent(Metaproterenol) and Albuterol didnt come on the scene until the early 70’s. About the only other meds we had back then that we still use today, are Prednisone and various Methyl Zanthines drugs like Theophyline. Though Theophyline seems to be more popular in the UK these days then over here.

Anyway, barring the craziness at home, health-wise I pretty much had a “normal” childhood. I played and ran around outside like most kinds 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 to do…they just deal with. 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 Primatine 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 Primatine mist. I remember being so short of breath that night that I would sit on my bed, legs crossed and would 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 a 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 calls my Mom into the room and says….”Your son doesn’t look right, Im 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 Xray dept. Its 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 days in the Pediatric ICU and 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, Im 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 far as the mean doctor who yelled at me, in retrospect he was probably just a little grumpy frome 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 This guy where he 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 3 months of running around with toxic levels of theophylline in my system, Id 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 was, and is, an authority on severe asthma, and Im happy to say that he’s been one of my favorite and most trusted Pulmonolists for almost 20 years now.

Following the Aminophylline escapades of my late teens, my 20’s and 30’s 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 skake 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 wasnt until my early 40s that I noticed a distinct change in my asthma. I remember particpating in a Respiratory Education Faire 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). I was in charge of demonstarting how the procedure is done. To my total amazement and shock, my best FEV1 during those demonstrations 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 and didnt realize it. Well, I followed up a couple weeks later by doing complete PFTs in the hospitals 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 seriously. It was also at that time, that my disease took a nose dive.

As I reached my early 40’s I noticed a pivital 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 and then get gradually get worse over the course of several days, instead of hours. I also noticed that I didnt wheeze as much when I was flaring, and that I was much more conscience of my effort to exhale. I think this is when I first became of aware that the sensation of air-trapping (essentially in the inability to exhale easily), was contributing to my distressful symptoms. My dyspnea, though relatively mild and tolerable when I wasnt 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 “pure” asthma, albeit severe, to more of a less well-defined chronic obstructive lung condition. I had lost much of the twichiness 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 ventilator during bad attacks. Most of the action seems to have moved down to my medium to smaller airways. Unlike classic COPD or Emphysema, my alveoli ( where oxygen and carbon dioxide are exhanged), seemed to be intact as evidenced by normal diffusion studies.

Throughout the rest of my 40’s and into my 50’s my asthma, or whatever the heck it had morphed into, was getting worse. I was short of breath all the time and was excerbating more often. The standard interventions and therapies werent working anymore and 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 all together.

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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 Ive been poked, prodded and scanned with every diagnostic tool available, and was even evaluated for lung transplant. Ive had some of the worlds best severe asthma specialists examined my case, only to scratch their heads. My asthma doesnt behave the way asthma usually does, nor do my exacerbations. Unlike most asthmatics who might suffer the occassional severe attack, end up in ICU or on a ventilator and then have a very protracted recovery period with 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 doesnt 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, or in 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 reocurring 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 experiance 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 minic, 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.

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8 thoughts on “Steve Asthma

  1. Sri says:

    Hi Steven,

    We’ve corresponded before and I was thinking of you and wanted to write. I had asked you about BT and you mentioned you didn’t qualify. I got it back in 2014, but it didn’t help.

    Thank you for sharing your life history as a severe asthmatic. Your life and work are inspirational for me. The historical aspect of asthma treatment is interesting as well.

    As a a 27 year old US expat, I’m interested in biologics for my severe asthma/Copd overlap but the only one available in my country is Xolair. I don’t qualify because although my IgE is high, it exceeds the upper limit (it is over 3000). Is there any specific reason for the IgE limits on Xolair, or is it just that they haven’t studied people with such high levels and don’t want to risk things? I think Dupixent would be good for me, but again, it looks like I’d need to move back to the US.

    1. Sri says:

      Sorry, your name got autocorrected and I didn’t notice, Steve!

    2. Hi again, I didnt know there was an IgE upper limit for Xolair, but 3000 is certainly high. Mine was only 60 when I was on Xolair.
      Last week my serum IgE was only 27! Is your eosinophil count hight as well?

      There’s a new a biologic in the pipeline that’s looks promising. Its called Tezepelumab and it should be available in the US by the end of this year. You might want to check it out.

      Take care

  2. Juan Enrique Rodriguez Diaz says:

    Wo Steven! I can’t imagine hard was for someone so asthmatic as you going trough with no medical treatment. It just saddens me deeply! As an asthmatic since I was a child, I thought I was gonna die on one of dose attacks. Specially when I was having a cold my asthma went very bad and still gets so bad tha I end in hospital. I’m 36 now and I’m taking it very seriously. My asthma manifestation usually generates a lot of mucus plugs I the only thing that helps me appart from my standard treatment my which consist of singulair, symbicort 160/4.5, albuterol, is the nebulized ipratropium bromide mixed with nebulized albuterol every 4 hours and prednisone 40 or 20 mg for 10 days. I just die without that. As always! My deepest gratitude to you. I just thank the lord I find you! You are such and inspiration! Thank you!

    Juan

  3. David Stock says:

    I appreciated this entry very much. I can relate to the changes in understanding of what asthma is and how to treat it. When I was 18 y/o in 1982, a case of pneumonia I had would not go away… so my doctor finally said it was asthma. He gave me a Proventil inhaler and a prescription for Slo-phyllin, and he sent me on my way with no education. I just thought I was supposed to take those medications until I felt better. But the dose for the theophylline was too high, and it made me sick. So I quit taking it. It wasn’t until I was in my 40s that those periods of breathlessness and stalled breathing, plus a strange whistle I heard when I ran, were diagnosed as asthma, and I was given proper treatment. And I like the concept of individuality when it comes to identifying phenotypes. My asthma has certainly presented itself differently over time, and people can experience it in many different ways.

    1. Thanks for writing. Things sure have changed. Like a lot of the drugs used back then, theophylline has a lot of effects. Nowadays it’s rarely prescribed for asthma(at least here in the US). I hope you’re able to achieve better control of your symptoms now.

  4. Mark L. Fox says:

    Stephen,

    I have tried many ways to contact you to help. I am the founder of Resona Health. Can you contact me please?

    Mark L. Fox

    1. Mark L. Fox says:

      I have a simple 1-page proposal I would like to send you.

      Thanks

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