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Asthma guilt trip

How many times have you had a really bad asthma flare, but had serious trepidations about going to the emergency room for treatment? How many times have you felt guilty that maybe you weren’t sick enough to be admitted to the hospital?

Well, that’s pretty much been the case for me for as long as I can remember. This, despite the fact that Ive become critically ill on more than one occasion, because I waited too long to come in for treatment.


Why do so many chronic asthmatics suffer from low self esteem or feelings of guilt? Why do we often deem ourselves unworthy of emergency care when we truly need it? Why do most of us procrastinate going in for treatment, when we know that the earlier we get in, the better the chances are of reversing a flare up before it gets out of control? Why do so many of us feel guilty or even ashamed and embarrassed about having asthma?

You don’t see people with cancer or other serious medical conditions delaying treatment because they don’t think they’re sick enough. So what makes us so different?
I think it was Dr Wenzel who told me, that this strange behavior is actually quite typical among asthmatics.

Where does all this psychological crap that we pile on ourselves come from? For me it seems to have started in early childhood.

I grew up at a time in the 1960’s and 70’s where ignorance about this disease was rampant. Asthma was considered more of a nuisance illness than a serious medical condition. There was this notion that asthma was a result of weak genes that one would inherit and that there was nothing you could do about it. There was virtually no patient education or preventative care available at the time, and what little was known about the disease turned out to be mostly incorrect. My doctor at the time smoked cigarettes!

There was one incident in particular, that I think really messed with my head. It was an asthma exacerbation I had when I was 14 year old. A mild asthma attack, that almost took my life!
Here’s a little bit of what I remember….

I had been feeling short of breath for several days and none of my medications were working. My Mom had decided that I should probably go to the Emergency room for treatment. We didn’t own a car, or for that matter a working telephone, so the only way I could get there was to take the bus. My Mom wrote a letter for me to give to the doctors giving them permission to treat me, and then sent me on my way.

When I arrived at the hospital I was still able to walk, but I could barely breath. I remember going up to the ER desk and handing the Nurse the note my Mom had written. The intern on duty, a young dude ( we’ll call him Dr. Meany #1) walks up to me and asks “What’s the problem here?” I tell him that I’m having a really bad asthma attack. He rolls his eyes, starts laughing and says…. “That’s like telling me you’re having a heart attack!” “You don’t look like you’re having an asthma attack!” He then listens to my lungs with his stethoscope and says… “I don’t hear any wheezing– you can’t be that bad”. He then orders the nurse to put me in one of the rooms and to give me some kind of injection. Less than 30 minutes after being laughed at by the ER doctor, while inside the hospital’s elevator on my way to have a chest xray done, I stopped breathing all together. Turns out that not only did I have a respiratory arrest, but my heart went crazy as well and CPR had to be initiated. The next thing I remember, is waking up in the intensive care unit hooked up to respirator.

Anyway, a couple of days went by and I was eventually extubated and moved to a regular room. The nightmare however, did not end there. I remember complaining to the nurses that the medicines they were giving me, were making my heart pound and making me nauseated. The next thing I know, another doctor, whom I had never seen before, enters my room and starts yelling at me. He actually starts blaming me for being sick “This is what happens when you don’t take care of your asthma! ” “Why did you wait so long to come in for treatment–You could have died!”
I remember I started to cry while he was scolding me. (Have you ever tried to cry when you can’t breath?)

That’s about all I really remember about that hospitalization, but I know now that it had a profound effect on how I would deal with my asthma in the years that followed. After that incident I would always delay going to the hospital when I got sick, for fear of being ridiculed, laughed at or not taken seriously. I found myself continually raising the ER bar if you will, to higher and higher levels. I would only go to the ER for treatment, if I “looked” sick enough. Even today, 40 years after the fact, I still catch myself trying to hold off from going to the ER until I’m on deaths door, because I don’t want to burden people. How crazy is that!

As for those mean doctors, I can only guess that Dr.Meany#1, had never witnessed a stoic asthmatic child in the middle of a severe flare. The reason I wasn’t wheezing, was because I wasn’t moving ANY air. Hopefully he learned from his near tragic mistake, that not all severe asthmatics act the same when they’re in respiratory failure.
Dr.Meany #2, was probably just annoyed from being called in from home during the middle of the night to treat a patient who had no medical insurance. Or, maybe he was just a jerk. Who knows… All I know is that his comments made me feel like I was a worthless piece of s**t and that my asthma was placing a burden on others.

It’s taken me nearly a half a century and a lengthy career in Respiratory Therapy to finally realize that it’s NOT MY FAULT that I have this disease. Bad things happen to Good people all the time. I think in my case, I was just born at the wrong time in history. I can only imagine how awful it must have been for some asthmatics who were born prior to the 1950’s…. It’s amazing anyone survived!

Thankfully, times have changed for the better now and asthma is receiving a lot more attention. Hospitals and Emergency rooms are much better equipped and the staff much better trained to deal with asthmatic patients. The ER I go to now (UCSF) is excellent. All patients with asthma symptoms are triaged the minute they come though the front door and are given priority based on severity.

My advise to those asthmatics who tend to procrastinate in seeking medical care, for whatever reason, is to figure out why you have these irrational feelings and work on fixing them. If you don’t already have one, get together with your health care provider and devise an asthma action plan that spells out exactly when you should come to the hospital for treatment. If you find yourself not feeling right, but not quite sure if you should go the the ER, just go in. With asthma it’s always better to err on the side caution, even if it means a brief prison stay.

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30 thoughts on “Asthma guilt trip

  1. Was this sparked by a certain discussion? 😉

    I'm also glad you decided to write about this, because as I've found out, a LOT of us do this. And, all the questions in the third paragraph — I've asked 'em myself, too.

    1. Thank you fir your post..I feel so bad after i have an attack..people are staring at me and even have said I was faking it..This has been hard for me so i petend to be ok…I really dont no how some people can be this way but i do still love them because no one understands until they have to face a sickness themselfs…

  2. I have the same guilty feelings about going to the ER. It's probably because as a child, I was kept out of the hospital unless I was seriously, deathly ill. My mom is a nurse, and she really didn't want me to be around all those germs when I was already so sick (and she does have a point). I was really well taken care of. Now though, after being breathless a number of times and going in for them to tell me I'm not wheezing and to go home, I just figure "What's the point"?

    Also, I'm Canadian, and while I love free healthcare, I don't love waiting 4-8 hours in a dirty waiting room 🙂

    1. one often waits that long in the States too…not asthma related, but I went into the ER with A migriane that had me experiencing stroke like symptoms, and I still sat in the waiting room for nearly 6 hours. (thank goodness it wasn’t a stroke)

  3. I always used to hide how I felt when I was a kid, I didn't like the attention my mum gave me or anyone else. My mum knew though and I would often wake up at night to find her watching over me as she could hear my dodgy breathing from her room. I used to beg her not to phone an ambulance 'just another half hour please' . I'd crawl to school just to prove I was ok. I also hate my mum visiting me when I'm ill, I used to get really upset and tell her to go home.
    I've got better at admitting defeat and going in now, 3/4 nebs and then its ambo time.
    We are a strange bunch us asthmatics!

  4. I tend to procrastinate until I feel I am "bad" enough (increasing use of albuterol, becoming short of breath with less exertion then usual, more sudden symptoms coming on, etc.) before I seek help, usually first choice with primary care physician. Having been through the wringer many times, I tend towards the stoic, go with the flow approach. Don't want to be labeled hysterical female patient. My lungs have been gradually going downhill last few weeks and finally had my routine appointment with pulmo doc yesterday. He got me a steriod shot and put me back on prednisone. Hopefully this flare-up won't get any worse now. Of course, now he wants to do a bunch of heart tests on me to rule out any cardio issues. I fail at the treadmill stress tests because even on my best days I can't walk quick enough before I get SOB to get enough time on the machine for an accurate heart assessment. Bah! Anyhow, thanks for letting me vent!

    1. Gayle, you can vent here as often as you like….I totally get it. There are a lot of us flaring right now. Sept and Oct seem to be bad months for asthmatics.
      I didn\’t know they still gave steroid shots at the doctors office. I used to get those back in the 1980s. It was a drug called Celestone.
      I hope the shots helps turn you in the other direction.

  5. I have adult onset asthma and part of the reason I used to wait is that I had a difficult time deciding if I was really having an asthma attack. Then I would think I would take time away from the people who were sicker than me. I live in a very small town, with a very small ER and hospital. I have to go to the ER for other things and they have gotten to know me in there. It is kind of embarrassing when you local ER knows you by name.

    1. I used to feel the same way about not wanting to take a precious hospital bed away from someone who might need it more. But the fact is, the majority of patients you find in a typical ER, are there for things like colds, mild flu, sprains and bruises, etc. Hardly life threatening stuff. If you\’re having a severe exacerbation, you\’re probably be one of the sickest patients there, so no need to feel guilty.

  6. I will often sit on the couch, not moving air well at all…KNOWING that I'm in trouble, doing piggy back nebs, with the thought of "who is going to take care of the girls if I'm in the hospital" Of course, rationally, I know that my mom, or my mother in law would come to help…but I'm not always rational when I can't breathe. I also need to start asking myself "who's going to take of the girls if I die"

    Excellent topic. Next, you should cover why so many asthmatics are so embarrassed to use their rescue medication in public. (though, it might stem from the same place.)

  7. Oh I know this feeling all too well. I always feel silly calling and ambulance to go to hospital when I am kinda mild but getting worse. I feel like I am not as bad as I can get so dont want to waste the drs time. I think it stems from a similar situation you had steve but not as severe. I walked into A and E when I was at uni in the south of england to be told by the receptionist that I didnt look like I was having as asthma so couldnt be that bad so needed to take a seat and wait my turn. I was sat near the triage nurses door. I sat there for about 30 mins before the nurse saw me and took one look and called me through and shouted at the receptionist to let the resp team know I was here. I had my sats done and they were dropping so I was taken through to resus and then sent up to ITU. I always wonder what would have happened if that receptionist had listened to me when i told her my asthma goes down hill very quickly. I always wonder if I would have ended up in ITU.
    I have had a few experinces where receptionist and even junior Dr's have been you dont look bad and your young so you will be ok.

    Thanks for sharing the story steve. I know I shouldnt hold back in going in but I do. I think it is a fear factor too as I know what it is like and I think I try and kid myself things are not as bad as they are.

  8. Wow this is such a good point.. I usually wait to long but am getting better at going earlier. Once the triage nurse didn't believe me made me wait etc. when a ER doc came in that knew me he couldn't
    believe they made me wait (and I was getting alot worse) He called me right in and I was really really tight,I did end up in the ICU.. The only good thing was he went right out to that nurse and set her straight and the Nurse Manager someone else… I am on a good streak right now and actually had a dream about going to the ER and how horrible it was….. My mom always made me feel guilty growing up with my asthma..
    Thanks for letting me vent…

    1. That's awful. I think I would have complained .

      One thing that might help in the future, is contacting your doctor before hand to let them know you're going in. Then when you arrive at the ER tell the triage Nurse that your doctor sent you. I bet they wouldn't make you wait for very long.

  9. How we are treated by medical professionals is what makes us feel this way, not what is in our heads. Most asthmatics know when there is a problem. If the medical professionals listened and acted on the asthmatic's statements I doubt this would be a problem. Here's an example – when someone has a history of asthma, and walks in, stating they are having problems, how about immediately, before iv's, before anything else, getting a nebulizer going, so that they at least have that going, before getting to iv's, etc.

  10. Forwarded from Katie Diemer, Steve – I am totally with you. Not to mention all the other commenting people as well. However, I don't think it is just in our heads, nor do I think the problem is over. I think there is a lot of subtle positive reinforcement of the idea that what we have isn't that serious, when we do go to the hospital. My action plan, for a long time, has been to call the Dr.'s emergency number, and see if he thinks I need to go to the ER, or if there is some other solution. The responses I have gotten range from the following: 1) My doctor's partner (all of whom are asthma specialists) saying – I'm not sure its asthma because you are coughing so much, 2) going to the hospital and having the triage nurse, or the nurse, or the rt, or even on occassion the doctor, say it "I'm not sure its asthma because you are coughing so much", or "gee, I'm not really sure how to deal with this because …. then fill in coughing too much, I can't hear wheezing, oh there aren't any sounds in the lungs, but gee you aren't breathing very well, etc." to 3) while I was in an ICU having a nurse tell me I didn't really need a breathing treatment, that I needed to wait for it and just not panic. All of these responses are responses which strongly feed into that feeling of I should not have come here, because I'm not really sick, and I am bothering these people. No one, no matter when they were brought up, and what their background is, wants to feel like a burden. Being a burden while in a hospital wearing a gown that show's off your butt, is worse. Yet, asthmatics often go to the hospital, and are immediately greeted by someone who verbally tells them they don't have a symptom which the person implies is "the" symptom for the diagnosis the patient thought they already knew they had. Often that comment is heard by someone who is having some serious trouble breathing, which also causes problems thinking. At least I always find it so. It's not surprising in that milieu that asthmatics don't rush to the hospital. The entire system is sending signals to their somewhat oxygen deprived brain that really the asthmatic doesn't have what the asthmatic is pretty sure the asthmatic does indeed have. Add to that the normal reasons one doesn't want to go to a hospital: 1) asthma for me usually happens at night and I don't like waking up my husband, or finding someone to watch the kids at 1 in the morning, 2) who wants to hang out in an ER at 1 a.m., in an urban area – I suggest no one — unless they are doing their sociology thesis or something, 3) those darn butt baring gowns! etc. I have to say that I had one experience in going to a hospital that was vastly different, and stands out because of it. I was on vacation, and hadn't taken my nebulizer, because I wasn't having any problems. I was lying awake, having some trouble breathing, but not so bad, I actually thought of going to the hospital. My husband woke up, and was worried the breathing would get worse, and suggested we go to the hospital. It was 3 in the morning, and I wasn't feeling terrific, and I thought why not – why ruin a vacation if this gets worse. We went to the hospital, as we walked in the door, there was a person you spoke to. Then you went to the triage nurse. When my husband and I got up to the greeter, she turned to the couple behind us, and said – just a minute, walked over to the triage nurse, and said, I have an asthmatic here, and am going to take her back to get a treatment, while we figure out what else she needs. She walked us back, introduced us to a nurse, whose first question was did I think I needed a treatment. I said yes, and it happened right away. By the time the doctor came a few minutes later while I was sucking on the nebulizer, I was in much better shape, and was able to go home without much more than some additional pred, in a much shorter time. Honestly, if that is what happened every time I went to a hospital, I would have a lot less qualms about going to hospitals. Most people who have asthma severe enough to need a hospital visit know if they need a nebulizer treatment, so asking that question first, and acting on it, not only sends a message to the patient that they are honoring the patient's disease, and the patient's own knowledge of that disease, but gets the problem dealt with. It doesn't seem like much of a down side risk either – as far as I know nebs aren't addictive, so there would be no harm if someone took one when they really didn't need it. But that was one hospital visit, out of god knows how many. I think we all, as asthmatics, do have our own issues about our disease, but I think a lot of those issues are reinforced by how the medical establishment deals with us."

  11. Thank you for this. I've had some bad attacks, and come from a family who doesn't do medical care (really). So my sense of what's bad is way stilted, and I also find myself uping the bar of how bad is bad too. Right now I'm on medrol for two weeks, but at least I can breath.

    Melissa

  12. Oh I am so glad you posted this!
    I am new to an asthma diagnosis and at the onset of my asthma diagnosis I would go to the hospital almost weekly because I couldn’t breathe. Docs would discharge me because I was a “hypochondriac” and it was just “anxiety”. Since then I am TERRIFIED of going to the ER for fear that I will be shooed out and thought of as an annoyance because they don’t hear me wheezing so “it can’t be asthma”.

    I even had a psychiatrist come into my room, tell me it was all in my head and prescribed me 1mg of Ativan 3 times a day! By the time I was done with the prescription in a month’s time, I was literally addicted to Ativan. By that time I had a diagnosis from my godsend of a doc but had to get my asthma under control AND detox from Ativan.

    Thanks for posting this and letting me know I’m not alone in my experiences. It has been a depressing, frustrating and scary world these past 8 months but I am glad I’m not alone.

  13. Ah…thanks for writing this and asking this question, Stephen. This is something I have asked myself a lot the past few months. As I posted on the healthboard (go to healthboards.com and look for my question – asthma symptoms – doctor’s not helpful for more on that rant!), I have had a lot of doctors (mostly pulmonologists – but my PC has said it too) tell me my “asthma is not that bad”. It seems I don’t have “typical asthma” – whatever that is, and therefore don’t have the “typical” symptoms. I don’t usually wheeze – unless I have really bad bronchitis and my lungs are full of, well..you know, so the first thing I generally get is “you’re not wheezing” when they listen with their stethescopes. I also typically have “normal” (again whatever that means) lung function tests. Even the med asst at my current pulmologist’s (soon to be former pulmonologist’s) office said to me not too long ago that my lung function tests were really good for someone who was “claiming to be sick”. Imagine how WONDERFUL that made me feel. Which was ironic because my PFs had been in my “low yellow” zone all day – (the lowest I had ever been) and I couldn’t even walk on my own from the front receiption area to the “test machine” in the back room by myself. She had to help me! (Kinda scary to think I drove myself there. No judgments please!). It was interesting too to note that my pulse ox on her sensor (that thingy they put on your finger) showed 91% – its never been that low, so I was sure I was going to get some attention this time. I was soo dizzy I couldn’t sit up in the chair in the examination room. So I laid on the table. My pulm came in and asked me a bunch of questions, which were the same ones I had just answered by her MA, listened to my lungs, told me I wasn’t wheezing, my lung function test was “fine” and sent me home. (Yes, I drove myself home, too! Fortunately I live close to her office). I managed to make it through that attack on my own, but it was not easy. I even went to work the next day. Something that makes me shudder now when I think about it!

    Yet, how can the tests be what the doctor calls “normal” and still be dizzy/light-headed, short of breath, fatigued and feeling like I have an elephant sitting on top of me if everything, according to the doctor, is fine? I’m not one to complain, so when I say “I don’t feel good” or “I can’t breathe”, I expect someone to take me seriously. I, like all of you, have never been one who likes to draw attention to myself. I often worry if I start to experience symptoms at work if this will be “the one” that sends me to the hospital in an ambulance. That would be soooo embarrassing. So, I will use my rescue inhaler and “plod” through the day eventhough it may be better for me to go to the ER and get treatment – it would just be waaaayyyy to embarrassing for my co-workers to see me hauled out on a gurney (spelling?). Especially now, since I just started a new job. I don’t want them to think I am not capable of doing the work. I also don’t want to have to inconvenience someone by having them have to come and get me at work, and take me to the ER. Especially now since I work the night shift!

    Here’s another thing that keeps me from going to the ER, my medical insurance has not only a deductible, but also a copay, and coinsurance. Its usually easy for me to meet the deductible because of my asthma issues, but the copay and coinsurance as not as easily taken care of. The policy I had at my previous job was a $150 copay for ER, plus 20% of the total bill (the copayment was waived if I was admitted – that was big of them!) so I can just imagine what the bill would have been like. Since I was only making $12.86 an hour, it would have been next to impossible to pay the medical bill. As it is, I already owe about $2000 just from office and urgent care visits. On my new plan (which doesn’t start for another month) the copay will be $200 for ER plus 20% coinsurance (again they will waive the copay if I’m admitted). So, now its going to be even more expensive which deters me evenmore from going. I also will have a $400 deductible to meet – which shouldn’t be hard, its just coming up with the money to pay it. I am going to be making more at my new job, but now I’m playing catch up with trying to pay my previous medical bills. So now with so many doctors who are supposed to be specialists and experts telling me I’m not sick, my stats are fine, etc. and worrying about the bill I’m going to get afterward, I think its easy to understand why I (as well as a lot of you) put off, or in my case, refuse to go to the ER.

    so, now that I’ve vented my frustrations about why I don’t go to the ER, I have a question for all of you: How do I know its time to go? My asthma action plan only states to go if my PFs fall below 60% of my personal best (into the red zone) or if my lips or fingernails turn blue. However, there have been days when my PF is still in the green zone and yet I am short of breath, even when I’m not doing anything. So, what should be my gauge? I know I need to get a pulse oximeter so I can measure my oxygen levels at home, but how low should I let them get before I go in? The times I have gone to Urgent Care (because its cheaper), I usually find that my o2 is aroung 93 or 94% and I’m already feeling not only short of breath, but dizzy and weak. They will then give me a breathing treatment (usually a double one) along with a chest x-ray and a script for prednisone. Yet, when I asked my pulm once about going to the ER she told me never to go unless my o2 was below 90% and if I’m going to Urgent Care before then, I’m not only wasting their time, but I’m getting doses of prednisone that I don’t need and that will do me more harm than good. So, now, I’m questioning my own judgement. I need to have an idea because as all of us know, when we’re in the middle of attack, we don’t make good decisions. I live by myself, so I need to make sure I know what to do, and when I need to either call 911 or a friend to come and get me.

    1. If you’re pulmo told you not to seek hospital care unless your sat was below 90%, Id say you need find another pulmo ASAP. That response is absolutely absurd. Sats have very little to do with the severity of an attack unless you’re near death. Asthma is a disease of the airways, not the alveoli where oxygen exchange takes place. You can be struggling for air way before you start de-satting.

      Most asthma flares can be handled at home safely as long as you have an action plan in place, but if your symptoms get slowly worse despite taking medications ( neb treatments, pred, etc) or your symptoms come on very suddenly without warning and they dont reverse quickly, you should seek help IMMEDIATELY.

      Having said that, there are a lot people who have a combination of mild asthma mixed with anxiety. The anxiety component can make the asthma feel much worse than it actually is. ER physicians see a lot of this and this is why some of them tend to discredit people who have actual true asthma.

      Bottom line , 4000 people in this country alone die of asthma every year. Most of them die before getting to the hospital. If you are experiencing an attack that seems unusual for you, dont mess around, go to the ER right away.

  14. This is such an interesting read. I’ve always been at a loss deciding when to see a doctor, let alone whether I should show up at the hospital. Which is why, I guess, I didn’t bother seeking medical care for a decade.

    I’ve always coughed a lot, but my relationship with oxygen started to get interesting back in 2002. I drove my roommates crazy with my coughing, and after a few years it got to the point that I couldn’t walk to class without coughing and coughing and coughing. I would be gasping for breath and exhausted by the time I turned up, and would just get sent back home. Of course, by that point it would be time to cough for another hour and that was pretty much it for my day. I went to see a doctor after a couple months of this and was told it was probably just a bad cold. To come back after a few weeks if it didn’t get better. My Dad told me I was just out of shape. I didn’t go back. I did end up missing pretty much a semester of class. I remember – one night, my roommate’s mother came to talk to me. She was a nurse practitioner, and wanted to talk to me about asthma control. Crazy.

    It got worse when I moved back north. Our winters are cold here. One winter, I was working for a nearby hospital and pretty much every day went the same. I would leave for work 20 minutes earlier than I needed so I would have time to stop coughing before I got to my desk. And after work? A minute or two after leaving the building, I would start coughing and coughing and coughing. By the time I cleaned off my car, I would cough so much I threw up. I would end up sitting there, gasping for breath with the heat blasting for ages until I felt safe to drive home. Every single day, though it never occurred to me that I should maybe just walk back to the ER.

    This year’s a little different. I was so sick, so often, I nearly lost my job. My lips keep turning blue.

    So, I eventually went to see a doctor and was diagnosed with asthma. Sort of.

    I’m on Qvar, Singulair and Ventolin – and the first time I used Ventolin in the middle of a coughing fit it was like a revelation. I don’t remember ever breathing so well.

    But the last time I went to the doctor’s office for a refill on my prescriptions, the nurse practitioner pointed out that my PFT only showed minimal obstruction and my lung sounds were clear. No way could I have asthma. She said that, probably, it was just anxiety or maybe my lungs reacting to all the dust where I work now.

    So, I don’t even know. I have an appointment with an Allergist this week, and I’m terrified. I don’t wants to be one of those people who waste time, take healthcare resources from people who really need it and I’m a little worried that I’ll be take off my medication when I’m starting to feel better for the first time in a very long time. It seems nearly impossible to be taken seriously.

    I can’t really imagine how sick I would have to be to seek hospital care.

  15. Thank you so much for sharing your story. I used to go to the hospital for asthma attacks and for chest pain. Regarding chest pain I had a couple of doctors that were just telling me to stop coming in one way or another one actually asked me why are you here? same as asthma, my heart rate was so high once its very scary.
    about once every 3 months or so I get a bad asthma attack and i try to tough it out and not see a doctor , i dont like emergency rooms they take too long to see you and then you wait forever before you are released.

  16. Since I’m DNR/DNI and have seen those wishes not always honored in hospital settings, I don’t go to the ER. However, I will go to urgent care. Locally, they can do the stuff I’m okay with at urgent care, like IVs and corticosteroid shots/epi shots, etc.

    Many doctors are ignorant about asthma and then don’t listen to the patient. Although my symptoms have changed over the years, when I first got it I mostly coughed. One doctor evaluating me said, “will you quite all that coughing, I can’t hear if you’re wheezing.” My guess is he never heard of cough variant asthma. Also, I’m a statistical outlier in terms of spirometry. I used to work closely with statisticians, so know about descriptive statistics and the most appropriate thing to do in the situation of a statistical outlier would be to compare them to themselves. In fact, this is also what allergists I’ve seen through the years have instructed me to do. I’ve seen my current allergist for almost 10 years now, and once he expressed the concern that someday someone might think I’m okay because they are comparing me to the norms when in fact I’m not okay as I might be at 50% of my personal best, which is a medical emergency. In fact, this very scenario has happened in the past if the doctor is ignorant about asthma, does not listen to me, and doesn’t know me. So, what is boils down to for me is that even if I was a full code, I don’t see why I should go to treatment at a place where the staff sometimes are ignorant and don’t listen. My main problem in the past has been that I try to catch things early, but so many in the medical field only intervene once it’s late stage.

    I’m very involved in learning about the disease, and very actively involved in controlling triggers. I take the initiative for my own health and am not passive in my care.

    I no longer live in Houston, TX but when I did the allergists there were very concerned with overloading the ER. So, they had a number to call and said if they don’t call back in 15 minutes, then go to the ER. When I called that number, they would try to determine if there was something they could do that would control the asthma without having to send me to the ER, like phoning in a prescription to a nearby pharmacy. They also encouraged the use of urgent care. They were very good at educating me on emergency asthma management and gave me some prednisone beforehand, a nebulizer I could use at home, and a combination of albuterol and ipratroprium bromide for the nebulizer. They used guidelines the National Heart Lung Blood Institute gave which was very specific and based on response to rescue drugs about when to add in additional medicines, like prednisone. Under such circumstances, they said to use the nebulizer and do the first dose of prednisone before even calling their on call number. They got me a peak flow meter to catch the severe attacks early and were very emphatic about the need to start nebulizer treatment early and not to wait. They also gave specific situations when to not use their on call system and to go straight to the ER.

    The reason I mention this is that I was trained early on to use other avenues of care than the ER. Mostly, follow the action plan, call the on call asthma doctor, go to urgent care and use the ER as a last resort. That’s how the allergists in Houston dealt with it and I guess through the years I just got used to it.

    My current allergist knows me well, knows I’m actively involved in my care, I monitor things closely, that I’m pretty good at determining triggers and avoiding what I can, etc. He trusts me, so he just writes a script for the emergency drugs ahead of time and I do it at home and if that doesn’t work, it’s off to urgent care. The emergency drugs I have prepared at home ahead of time usually get me through the night alive, so the after hours problem isn’t a big deal.

    I don’t like doing the emergency management in front of others due to pride. I don’t like others seeing that I can’t even control the most basic of body functions, like breathing. It is humiliating to me. So, I am stealth if at all possible. If it’s not possible, then screw it, I just give everyone a show and pull out the nebulizer right then and there and if they don’t like it, then tough.

  17. As long as I’m getting the medicine in on time, I’m okay with being stealthy because a lot of people don’t understand asthma and don’t always respond in a helpful way. But if I can’t avoid it, then I go ahead and do it in front of everyone. I think if the general public were more understanding of what a severe asthma attack is it would make it easier for me to not be stealthy….still, I agree and it’s a better situation if I feel comfortable in letting the people around me know what is happening and if they respond helpfully. I remember several incidences when people have gotten in the way of me taking rescue medicines, though, or couldn’t understand why I had to leave since their cigarette smoke was triggering an attack. I normally still leave the trigger, but try to find another excuse if the person will not respond in a useful way. I’ve been fortunate lately in that I’ve met some people who do understand and who I can be honest with about what is happening and they’ll try to reduce the triggers as much as possible and ask if I need any more medicine. Still, it creates an ackward social situation that I wish I didn’t have to deal with, not to mention my pride. People oftentimes assume if you have asthma that isn’t completely controlled by controller meds that you have a psych issue and some will call you crazy or whatever.

    Also, just to be fair to the emergency room doctors in my area….it’s often the support staff that don’t triage well or have some ignorance. The ER doctors themselves are pretty good. As an example, once I went in after already taking a dose of prednisone and doing a nebulizer treatment with albuterol and ipratropium bromide. However, the nebulizer treatment was wearing off. The medical assistant told me I needed to move faster since they were running behind and asked why I was so slow. I said in broken English (as I couldn’t talk in complete sentences), “asthma bad. Neb wearing off, doctor please.” She responds by saying I just have to wait like everyone else and I need to not be selfish and I need to realize that other people are there as well. She puts me in a back room with the door closed and says the doctor will be in in about 45 minutes, and I just to be patient. She didn’t do any assessment, no peak flows, no respiration counts, didn’t listen to the lungs, didn’t get an O2 sat, no assessment done to measure severity. So, I stared at the door after she closed it, and thought, “well, that really builds my faith and confidence”…and I got a peak flow reading, it was low again (consistent with the symptoms), and I did another albuterol/ipratropium bromide combination in the nebulizer, I waited for 15 minutes after it was done, redid the peak flow, and it had come up some and I felt better. When the doctor came in the room, he asked me what I was there for, and I told him but also told him I already stabilized myself for the next few hours. He turned white, ran out of the room saying he needed a stethoscope and immediately responded. I told him about the medical assistant and that he may want to educate his staff better on how to triage asthma attacks. Even so, sometimes the doctors don’t understand about cough variant asthma, which can be a problem.

    The urgent care centers in my area are more expensive for the patient than the emergency rooms, but when you go in, you have a secretary who takes your information, then you see a board certified ER doctor usually within 15 minutes of when you first entered the door. Most people don’t go to these urgent care centers due to more out of pocket cost for the patient, but I usually do because it avoids the initial triage problems of some of the ERs in the area. Most of the time the doctors in my local urgent care centers understand about cough variant asthma and understand that every asthmatic is different and so will listen to me when I tell them how I typically respond.

    Sometimes medical personnel think that every asthmatic is the same and presents exactly the same, but it’s just not true. There’s a lot of variability between asthmatics, so I like it when a doctor will listen to me when I tell them how I typically respond to various medicines. Most of the time, urgent care doctors around here will do that….but medical assistants or unit secretaries in an ER may not because they may have only had a few courses in asthma care.

    I have more confidence in my local urgent care centers than in the ERs.

    Anyway, you are right, though…it’s better if an asthmatic is open about what is going on if they are around people who will be helpful. I’ve actually had experiences with people who have called me names or inadvertently take away my rescue medicines while I’m having an attack such that in that situation it would have been safer to be stealth.

    Through the years, overall I’ve found it much easier to just take care of it all myself rather than have to take the time and energy to explain things to someone else in an ER who may not know much about asthma other than an introductory course (I’m talking mostly about the initial triage folks, medical assistants, unit secretaries, etc).

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