Friday, October 1, 2010

The You Don't Have Asthma Curse Explained

I got a comment asking about the 'you don't have asthma' curse, so I thought I would dedicate a post to it.

Asthma is an incredibly common disease but it is also very strange. Well, the asthma isn't strange, it's pretty consistent, the doctors are strange.

First, asthma is a "diagnosis of exclusion" which means the patient has to let the doctor work through a long list of other diagnoses before they'll officially confer the title of asthma.

However, this title is non-transferable.

Go to another doctor or even an ER and suddenly you don't have asthma. Actually, you are a transvestite crack whore with a foreign object up your rectum who is trying to score narcotics--at least that is how you will be treated, with very serious suspicion.

Therapy may be suggested. Never mind you can't breathe well enough to talk.

I believe the official doctor motto of medical stupidity is 'if you haven't wheezed for me personally, then you don't have asthma.'

Which kind of turns asthma into an absurd performance art.

If you can't be sick in the right way, right in front of the doctor, you will be denied treatment. If you don't retest or do what the doctor needs you to do to consign a diagnosis, you will be denied treatment. Even if your medical records are right there in front of them.

Of course there are exceptions, because not every doctor is an idiot, but quite frequently you will be left hanging on the thin thread of oxygen you are subsisting on until the doctor can prove, to their satisfaction, that you really do need a nebulizer treatment or an Advair prescription.

Because as we all know, those drugs are worse than heroin with super dangerous side effects that can kill you in a nanosecond, right? And response to treatment is in no way diagnostic, right? (Except for kids, pediatricians do consider positive response to bronchodilators as indicative of asthma, but I guess that all changes once you hit 18 and start your career as a transvestite crackwhore.)

The other thing that is weird is a methacholine challenge (when properly done) will confirm asthma so I'm not even clear on why it is still a diagnosis of exclusion. My understanding is diagnoses of exclusion are reserved for illnesses that can't be readily tested for. Asthma has a diagnostic test.

Here is a brief list of the times I have run into the 'you don't have asthma curse.'

1. Multiple ER visits. My favorite is the ER doctor who actually had asthma himself but was skeptical about me. He drew an arterial blood gas the old fashioned way to be sure (no pulse ox for me! I'm a lousy crackwhore, remember?). I had to wait until he got the lab results back before he would allow me an albuterol treatment. It was a long wait.

When I was 18, I ended up in a Children's Hospital ER after visiting the boyfriend's family who never cleaned their house and had wads of animal hair in every corner (which I was allergic too). I was so tight, there wasn't enough air movement to wheeze. They didn't think I had asthma (All asthmatics are pathological liars!) and grudgingly gave me a nebulizer treatment after which I wheezed profusely as my airways opened. "OH, you DO have asthma," were the doctor's exact words and inflection.They were so surprised!

As if asthma is the Yeti of medicine. Often talked about, but never seen.

2.The asshole allergist who years ago saw me as a patient and had no problem with the idea that I had asthma. Saw her again 2 years ago in a different health system and suddenly I didn't have asthma and she wasn't going to prescribe my medications despite having all my records. I had to BEG for medication. She also screwed up the methacholine challenge and I had to raise holy hell with the HMO.

She is no longer employed there. I like to think I had something to do with it (but probably not).

3.The pulmonologist who screamed at me "Who said you had asthma? Who gave you a nebulizer?" Asshole. After my pulmonary function tests came back, he shut the f*ck up because my airways were down by 50% and you can't fake those tests.

I could go on, but you get the point, right?

What enables this curse?

1. Inability to recognize that patients can have good air movement even if the patient has lost their small airways. This happens to me a lot. Thing is if you've lost the small airways and don't do something, you're going to lose the big ones too. Better for everyone to keep that from happening.

2.Crappy peak flow meters in ERs and doctor's offices that don't provide good data.

3. Not using pulmonary function testing in the ER. This could actually be a profit center for ERs. There are so many asthmatics I can see this being a win-win for everyone and the information provided is so much better than what you get from the crappy peak flow meter. Someone should do a study.

4.Doctors who expect asthma to conform to some preconceived notion of what asthma is and not understanding that asthma varies from person to person.

5.Seeing so many transvestite crack whores with things up their rectums who want narcotics, that doctors can't see anything else.

6.During office visits, doctors who don't read the damn patient file and review previous lung function testing and other empirical data that is diagnostic of asthma.

7.Doctors who believe if there's no wheeze, there's no asthma. You can be too tight to wheeze. It's in the medical literature, it's documented. Not sure why doctors aren't aware of it.

8.Patients who can't breathe well enough, in emergency situations, to advocate for themselves.

I think that about covers it. Do you have anything to add?

19 comments:

  1. omg. i love this! i'm sorry you're having to go through this, but i totally understand.

    ppl in the medical field can be total jerks when you're really sick...like what do you have to gain from getting asthma meds? (i mean, other from being able to breathe and all) are they commonly abused or something...

    i've been that transvestite crackwhore for years...not for asthma meds but for a lot of other reasons.

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  2. Thanks LaToya! Sorry you are in a position to understand.

    M

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  3. Sucks that we have to go through stuff like this but it's so true. I mean why the heck would I want prednisone or symbicort or ventolin if I could breathe enough to do the stairs or talk while walking.
    The only other one that I sometimes get is well you can't possibly have asthma, your peakflow is above predicted (which is kind of a combo of 2,3,4 & 6). Umm... look back at my chart when it was just below predicted... remember how you could barely tell that I was breathing... distant shallow breaths. Maybe because that is low yellow or high red for me!

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  4. Hi Kat! OH I HATE the 'peak flow above predicted'. I have ginormous super lungs, I have hit peak flows of 800. Done 133% of predicted on pulm. function tests.

    My huge lung capacity is a huge barrier to care in the ER.

    Fortunately, the asthma is slowly eroding my lung capacity. I've lost about 50-100 'points' on the peak flow since I was in the hospital in March.

    A couple more rounds like March and my regular peak flow will be below predicted.

    What will they do then?

    M

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  5. Ah, yes, this makes much much sense. Like you and Kat, I too fall into the peak flow readings of way above average. So, because of this and even when feeling bad I still managed 110% of predicted on PFTs, and a methacholine challenge test that was originally read as "yes, you do have asthma" (that's what that pulmo told me), then 3-4 weeks later he changed his mind and said it was not indicative of asthma. What?!? You're going to tell me yes, then no, and say that even though I was in the ER twice in 4 weeks around that time and responded very well to bronchidaliators there, that I'm not out of control enough to warrant changing my meds and trying others????? Thankfully that pulmo actually sent me to a colleague of his because he was clueless.

    All the ER docs in Missouri this spring told me that my excaberations I came in for looked like asthma. In fact, that ER was where I was first told I might have asthma. However, back home, most of the doctors in the UC have been like, "your O2 is 100%, it's impossible that you have asthma" even when I could hardly breathe, talk and think till AFTER the breathing treatment my mom had to beg they give me.

    Add to all that, my current pulmo (who's actually not bad) keeps telling me that he doesn't think it's asthma, but keeps putting the diagnosis every visit as "asthma". I had to push for trying symbicort, which we discovered really helps me, and for trying singulair again, this time however, lactose free (lol, I get to take the kids chewable tablets!) and that seems to be helping too. Basically everyone is confused and no one really knows what's going on, except we know it's not heart related.

    Ok, for one more question.... about the methacholine challenge.... could you expand on that?

    MC

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  6. Well it's not heart related but asthma meds work, so why can't they make the connection? I would keep looking for a better doctor. Eventually you will have an episode bad enough that all the evidence will point to 'it's asthma, stupid'. Get a copy of every single piece of paper from that episode and use it as your calling card for future docs.

    I am working on a post on the meth challange for you.

    M

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  7. Ugh. I was misdiagnosed with asthma as a child. If I never see a nebulizer again it will be too soon. I hated the way the meds made me feel. Shaky and I still felt like I couldnt breathe.

    What doc in their right mind would ever think anyone would want to take those meds unless they needed them. Ugh.

    For me its been the opposite - my allergies can make it look, feel and sound like I cant breathe but I'm still getting plenty of oxygen and the pulmonary function tests come back clean - plus I dont respond to the asthma meds. Antihistamines and steroids on the other hand are my friend.

    Its taken ten years of gentle reminding by my primary care doc to believe I dont have asthma but even still I havent let go of the childhood images of the doc hounding me about my asthma meds and scaring my parents because I wasnt compliant.

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  8. So sorry to hear, I am new to asthma as it only took developed about 8 months ago. My primary care was a pulmonologist who kept insisting it wasn't asthma and kept putting me on antibiotics (????) but the allergist diagnosed me in 10 minutes and I have never had the ER give me a hard time. I have however had fibromyalgia for almost 10 years and talk about a condition they love to deny... at least it isn't life threatening but I have totally given up on modern medicine for it.

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  9. I just have a general question to Pissed Off Patient or anyone who can offer helpful advice because I am really lost and sick and tired of not being able to breath and stupid doctors who won't do anything about it. I'm 30 years old. A couple months ago, I started having difficulty breathing. It got worse so I scheduled an appointment with my doctor. Because I don't have health insurance he was going to send me home with antibiotics because the spirometry test would be too expensive for me. I told him to just give me the test and I'll pay for it. He gave me the test and came back in and the first words out of his mouth were "Wow you have severe asthma." He gave me a ten minute treatment (which made me feel a little better but not much), QVAR and ProAir and sent me home with antibiotics as well. After a week I noticed not much improvement at all. I could never get a deep breath and doing any physical activity made it worse, my rescue inhaler didn't help and sometimes made me feel worse. A lot of days I would be laying on my side and when it got real bad I would wheeze and cough. I went to the ER and that was a complete waste of time. I went to go see a different doctor at a hospital system supposedly set up to offer good quality care for people without health insurance. She gave me prednisone and set a follow up for the next week so she could review the spirometry that the other doctor gave and the blood and chest x ray from the ER (which was all they did after I insisted I wasn't having an anxiety attack, I felt just fine except for the fact that I couldn't breathe). I come in the following week and the prednisone had no effect either. I was sitting in the doctors office, struggling to breathe but not wheezing or coughing at that particular moment. They seemed very puzzled and listened to my lungs and put that damn pulse ox thing on my finger and without any diagnostic test declared they were very befuddled about what I could possibly have. The doc took me off steroids and put me on Vistaril for allergies and anxiety. So I took it and it made me less anxious about not being able to breathe but I still couldn't breathe. After weeks of going back and forth and waiting for her to go over my medical records that never seemed to come, I had a methocholine challenge today. I have an appointment on Friday to go over the results but the lady that did the test said it was negative and my lung function did not fall below 20%/ This really surprised me because after the second and third dose I really started to have a hard time breathing and it really just seemed to annoy her. So I already know on Friday when I see the doctor what they will be thinking. And I say "they" because the one I see is actually a Nurse Practioner who needs to check with the doctor every 5 seconds about everything I ask. So any advice or thoughts? I don't understand why I have to convince them that I can't breathe. I'm not asking for narcotics or any of that stuff, I just want to breathe.

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  10. Alisha,

    Have you been tested for Autoimmune Disorders?
    I have spent the last 3 years of my life battling every type of Doctor known and FINALLY this May 2012, I was diagnosed with Wegener’s Granulomatosis via The Cleveland & Mayo Clinic. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001192/
    This is a list of more common symptoms of Wegener's.......EVERYTHING your describing is listed under, Other Symptoms!

    Frequent sinusitis is the most common symptom. Other early symptoms include a fever that continues without an obvious cause, night sweats, fatigue, and a general ill feeling ( malaise).

    Chronic ear infections are common. Other upper respiratory symptoms include nose bleeds, pain, and sores around the opening of the nose.

    Loss of appetite and weight loss are common. Skin changes are also common, but there is no one typical lesion associated with the disease.

    There may be symptoms of kidney disease. The urine may be bloody.

    Eye problems develop in many people with Wegener's granulomatosis. The eye problems range from mild conjunctivitis to severe swelling of the eye.

    Other symptoms include:
    Chest pain
    Cough, with or without blood
    Joint pain
    Shortness of breath
    Weakness
    Wheezing

    I think it's worth requesting for your sake! If I had listened to All the Doctors, ER, Urgent Care Staff I would not have found out what was REALLY wrong and who knows if I'd still be among the living.
    There are still MANY in the Medical Field who discount or point blank refute that I have Wegener's because it's not widely understood and no one seems to know much about it. Ignorance is bliss right?!? Please if you can....by any means.....get tested.

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  11. I'm really glad I found this

    Now I've been having fits of coughing and wheezing for years and years since childhood, usually at night or early mornings and nothing I do seems to prevent it.

    Time and time again I've been to the doctors, first taken by parents as a child and since then multiple times on my own.. problem is since this mostly happens at night, while I am in the doctors office the wheezing/coughing isn't present.

    5mins later after blowing into a machine I'm sent packing out the door with the only words from the doctor 'you don't have asthma' .. no other tests, no other possible causes put to me. Just sent away feeling like I've wasted their time.

    So I'm still coughing and wheezing through the night and no closer after all these years of discovering why or how to prevent it.

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  12. I want to print this and shove it to the residents face if ever I land in the ER

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  13. I have had severe asthma since I was one year old. I have never once been questioned. I'm always treated promptly when I show up at the ER. I've even had a pharmacy give me ventolin without a prescription. Is this because I live in Canada, or have I just been exceptionally lucky?

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  14. Hi Jolty. Sorry for the long delay. My guesses are...

    1. You could be textbook perfect asthmatic and the way your symptoms present are exactly what doctors are looking for.

    2.You live in Canada which has some effect. We would never get Ventolin w/o a rx here in the USA.

    3. Some people are lucky. I'm not lol. Also our healthcare systems are markedly different. Healthcare is all profit driven in the US.

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  15. I am going through the same problem and I am so sad. I have asthma due to severe allergies. I have recently changed doctors and both a pulmonologist and an allergist say I do not have asthma after being on corticosteroids since I was two ( now in my late 20's). Wouldn't I have died or had some adverse reaction if I didn't have asthma? Wouldn't I have had a heart attack by now? Anyway I benefitted from a Xolair injection which my new doctor has now denied me...this injection has benefitted me for 5 years. I am told that my lungs test says that my lungs are in too good condition to have asthma and that my allergies are too severe for the injection. The pulmonologists response was that he didn't know why Xolair is working for me. It just shouldn't be.

    Without the injection I experience extreme fatigue, chest tightness, and horrible sinusitis. All these things were gone with Xolair not to mention I was able to engage in regular exercise. When I received my pulmonary test I had been on prednisone for 5 months and no one will acknowledge that influencing my results or the fact that I have severe controlled asthma, emphasis on controlled which means when properly medicated I am fortunate enough to have well working lungs. I was so shook by these two doctors I began to speculate if I was crazy! I stopped taking my meds for two weeks and ended up with a chest rattling phlegmy cough that disturbed others around me. I began taking my medication again.

    Also, so often, many doctors fail to pay attention to the fatigue faced by people with allergy asthma who are affected by allergens and weather change. Weather change is something that people with inflammatory diseases are affected by and often this symptoms go overlooked. Weather affected symptoms are very REAL.

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  16. oh and to add to my apologetically lengthy post. I have also been diagnosed with vocal cord dysfunction. I believe I have asthma and vocal cord dysfunction And that in fact my vcd was caused by my asthma. Unfortunately when I told my pulmonologist that I was have vocal cord problems, that my throat hurt for 5 months. That I had bronchitis twice, proceeded by laryngitis, which set my asthma out of control. He was like: Eureka! You have vcd. No asthma, and don't come back for 5 to 6 months.

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  17. Wow, strong work trying to help your friend and it was an excellent idea on your part. Sorry that she didn't make it.

    Even though your friend died of a stroke, it does prove an important aspect about asthma in that you can get to the point in an asthma attack where there is little medical providers can do to help so early treatment is best.

    Same with allergic reactions that have multiple system involvement-- there can be a point of no return.

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  18. wow, im so glad i came across this!! i thought it was only me that was denied the fact that i blatantly have asthma even though im constantly wheezing and can barely breathe because my throat feels so constricted

    i was told it was just an "infection", they gave me some crappy antibiotics and gues what,,,years later i still have undiagnosed asthma

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  19. I was told I didn't have asthma because I also have anxiety attacks and it must just be in my head. IT must just be me having an anxiety attack, but I can't breathe. It has nothing to do with anxiety. My airways are closed, dumbass.

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Thanks for your comment. I read all comments and do my best to respond to questions, usually in a new post.

If you have adrenal issues and want to connect with other patients the following message boards are wonderful resources:

http://www.mdjunction.com/forums/adrenal-insufficiency-discussions/general-support

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