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Surviving one of the worst asthma episodes of my life.

I’m lucky – my asthma has been well controlled for over three years. No need for controller medicines, only the occasional quick-relief inhaler used before or during exercise. It was heaven.

Worsening of asthma symptoms

After three weeks of exhausting travel across the country, my work brought me to California’s Imperial Valley. This county has some of the worst air quality in the country. We took a tour of the dried-up Salton Sea, which is polluted by runoff pesticides from local farms and is saltier than the Pacific Ocean. Biologists tell us the winds are allowing water from the bottom of the sea to rise and release the gas hydrogen sulfide, causing a rotten egg smell. After 30 minutes of visiting this area, I could feel my chest tighten. This was Wednesday afternoon.

I have cough-variant asthma, meaning my main symptom is coughing versus wheezing. The cough started Thursday morning, but I managed to drive several hours to the airport and fly home, spending a few hours in the office. I was using my quick-relief inhaler a lot, even though it had expired two months ago. The inhaler wasn’t helping much. By Friday night I was in serious distress and considering calling 911. I talked myself out of that, not wanting to wake my neighbors or upset my dog. I also had a migraine and was trying to manage my pounding head and nausea along with struggling to breathe. I felt “too sick” to get dressed and take an ambulance ride. I want to clarify that was not a smart move; when you think it’s time to call 911, it is time to call 911.

The best way I can describe how my lungs felt is like this:  You know how when you lift weights, climb stairs or run until your muscles shake, ache and burn? And you just must stop? That’s how my lungs felt. They were on fire and shaking and just completely exhausted. It felt like they wanted to give up, to just take a break from breathing. Except you can’t stop breathing. You must force yourself to keep those lungs working. It’s hard. And scary. Very scary.

Finally, after surviving one of the worst nights of my life, I pulled myself together and went to the ED. While checking in I experienced what most of us with asthma experience; an ED staff that seems to know nothing about asthma. When I said I was there because I was in the middle of a three-day asthma attack, the woman at registration asked, “So, what does that mean? Are you just having shortness of breath?” Um, yes, you can say that, but it’s an understatement. Over at triage the nurse knew a little more but felt I was ok because she couldn’t hear any wheezing. All asthmatics do not wheeze! Since my oxygen level was only 90 (normal readings are between 95 and 100, so 90 is low) I was brought to a room immediately.

The doctor listened to my upper airways, also saying he didn’t hear any wheezing. I could barely talk and could not stop coughing. My core was so sore from the relentless cough. I tried to explain while gasping for air that my cough-variant asthma presented differently, and I asked for a respiratory therapist. Instead, the nurse came in. She also placed the stethoscope on my chest and upper back, stating she couldn’t hear any wheezing. I reminded her that asthma is a disease of the lower airways, and she needed to listen lower. She put the stethoscope ¾ down my back and said, “Oh, yeah, I can definitely hear something is wrong.” Thank goodness; a medical professional finally believes I’m having a serious asthma episode. Maybe now I can be treated.

I was given three back-to-back breathing treatments and oral steroids. I immediately felt my lungs relax and the burning sensation went away. After a few hours, I was sent home with more oral steroids, a new quick-relief inhaler, and a controller medication.

Value of self-advocacy

I was reminded how hard it is to advocate for yourself when you are in distress. Especially if you don’t have someone who can come and advocate for you. I had to fight to get the medical staff to believe I was having an asthma episode and for the proper treatment, was able to do so because asthma education is my career. As a certified asthma educator (AE-C) I could use my credentials to fight for what I needed. I worry about those who do not have a voice or an advocate to ensure they are receiving the medical care they need and deserve.

This experience has renewed my passion and mission to continue to educate clinicians in how to provide national asthma guidelines-based care. I have a lot of work to do.

We live with asthma, and we are the experts in what we need to manage our disease. What suggestions do you have to improve the care we receive from our medical providers? Share them in the comments and I’ll include them in my provider trainings!

Follow me on twitter at @asthmachef for tips on living and eating well with asthma.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Asthma.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • ypuck
    2 years ago

    I was diagnosed with cough-variant asthma almost 2 years ago but still feel very unknowledgeable. It’s very scary for me to read about your experiences and the lack of knowledge in the medical profession. I think it would be very helpful to have a medic alert card to carry at all times with information about your specific type of asthma. Personally, I’d like a brochure or something for myself that explains what’s going on. I have been coughing for 2-1/2 years. Sometimes it’s better and sometimes it’s worse. My doctor changed me from Breo to Symbicort about 6 weeks ago because I thought it might be what was causing my constant hoarseness. Since then my coughing & shortness of breath are a lot worse. I went back on Breo 3 days ago. I have a referral to a pulmonologist but it’s in 6 weeks. I just don’t know what more to do. I had thought about going to urgent care but now I’m afraid they won’t know how to help me.

  • Leon Lebowitz, RRT moderator
    2 years ago

    Hi ypuck and I’m sorry for the difficulty you’re having getting your asthma condition under control. Recognizing that you have a 6-week wait before you are able to see the pulmonologist, I would suggest returning to the physician who prescribed the Symbicort for you. (Unless you’re able to coerce the specialist to give you an earlier appointment). Since you describe your symptoms (coughing and shortness of breath) as getting a ‘lot worse’, this is definitely NOT something you should be dealing with on your own. You’ll need to really advocate for yourself. I’m concerned, too, given the way you’re describing your present condition.
    Please check back with us and let us know how you’re doing.
    All the best,
    Leon (site moderator)

  • seaturtle08
    2 years ago

    I wish that provides-especially ED providers-were more informed on atypical asthma and breath stacking. When I go into a severe exacerbation, I do not wheeze and my pulse ox levels do not drop below 96-97 until I’m in respiratory failure. My pulmonologist knows this, and she also knows that my “normal” peak flow is well above the estimated value. I’ve had the experience where nurses and doctors have both told me that I’m not trying hard enough to breath, since I have very diminished breath sounds but they can’t hear wheezing. At various points I’ve been told both that it’s not asthma, it’s anxiety (cause my pulse ox is normal) and that I wasn’t panicked enough to actually be in an asthma attack. Respiratory therapists have told me that my peak flow is pretty good when I’m actually in severe distress because they don’t believe that my normal is as high as it is (I now carry records from the allergy shot clinic, showing 6 months of blowing a 680-700 peak flow every 2 weeks). At times, I’m afraid to go to the ER because I don’t have the physical or emotional strength to deal with it.
    I’ve also had some great experiences. A critical care doctor who was intubating me waiting until the nurse had started to push the sedative before he laid me down, because he didn’t want to make it any more difficult for me to breath before I went under. An inpatient pulmonologist who had taken care of me twice before but wasn’t on call when I was admitted most recently coming in just to check on me when he heard that I was back in the hospital.

  • Lorene Alba, AE-C moderator author
    2 years ago

    Hi Seaturtle8 – this is so hard to hear! I’m so sorry you have had to go through this.

    Asthmatics are notorious oxygen compensators, so pulse ox readings only tell a small part of the story. Same with peak flow meters. I can certainly relate to feeling too exhausted to go to the ER; who wants to deal with fighting with doctors when we are so sick?

    It’s smart to bring your records with you, and I’m glad you have received good care.

    Lorene, Moderator

  • denisebe
    2 years ago

    If they would really listen. Before I go I have normally stacked breathing treatments in top of my control medication – fire season is my biggest challenge – I know if I am there I need medrol – and they never believe my first sign of an acute asthma attack is often the hiccups – we patients who live with this everyday are not stupid like hey tend to treat us

  • Lorene Alba, AE-C moderator author
    2 years ago

    Hi denisebe,

    We have lots of fires where I live, too, and fire season is always a challenge. I also know what I need and when I need it, and it is frustrating when medical providers don’t listen to us. Obviously doctors can’t just do what we tell them – what if we are wrong? But there has to be a good middle ground. ~ Lorene, moderator

  • Lucydiane
    2 years ago

    I cannot believe doctors could be so uninformed about asthma & the various ways it manifests, especially upon listening to the lungs. I have been lifelong asthmatic but have gained control with a daily regiment of 2 puffs of Symbicort in the morning along with 2 inhales of fluticadone propionate nasay spray& generic claritan D. In the evening I also take generic Singular. If my asthma starts to present I add another 2 puffs of Symbicort in the evening. I also have a Ventolin rescue inhaler which I have hardly used throughout the year.
    So with all of the medicines I haven’t had an asthma attack since last year on June 1st until the early morning of (ironically) June 1st of this year. However this time I experienced no wheezing whatsoever! Wheezing is always present with my asthma flare-ups & I consider it to be a tell-tale indicator or warming. This time I could breathe in air but could not expel & just got what I have been told is tightening of the chest. I wasn’t even sure if this was asthma so I called my doctors office. When I explained my symptoms they advised me mot to wait until the late afternoon appointment time but to go to urgent care.
    At urgent care my oxygen levels were ok as was my blood pressure. A listen to my lungs while exhaling confirm asthma attack. I received nebulizer treatment & given a script for 5 days of prednisone. & was told to use inhaler every 4 hours.
    I mentioned that last June when I had to go to urgent care with the result that after finishing the 5 days of prednisone I ended up back in urgent care on June 7th so I was instructed to see my doctor in 5 days. Sure enough my lungs were not totally clear & so I waz put on 5 more days of prednisone. That did the trick.
    I still never had any wheezing whatsoever. Underlying inflammation seems to be what is there at the start of asthma but how to address & manage this is still not well understood.

  • Lorene Alba, AE-C moderator author
    2 years ago

    Hi Lucydiane,

    So, two attacks on June 1? I have also noticed that my severe attacks happen around the same time every year – within a few days of each other. Interesting!

    You are correct, it’s the underlying inflammation that actually causes asthma. When the inflammation flares, the muscles tighten around the airways – boom! Asthma episode. Science is still trying to figure this all out.

    Our asthma symptoms can change; one day it could be shortness of breath, and another day it could be wheezing. This disease loves to keep us guessing!

    Are you feeling better?

    Lorene, moderator

  • Bdcline
    2 years ago

    So glad to hear other people have had the same issues. I have felt almost belittled at times because I am just coughing and not wheezing. I even had one doctor tell me he does not believe I even have asthma. He also asked what test was used to diagnose. When I told him it was the methacoline challenge he agreed that is the best one but still doubted because I wasn’t wheezing. I do not know many people who have dealt with this so at times it has made me doubt myself. Glad to know I’m not the only one

  • Lorene Alba, AE-C moderator author
    2 years ago

    You are so not the only one! I’m sorry you have felt belittled by doctors. The methacholine challenge is pretty definitive! Thanks for sharing – and thanks for being part of our community.

  • Paddy2cake
    2 years ago

    Good comments! Maybe along with our meds/inhalers we carry with us, we should have a shortlist or a couple of sentences typed out for less informed healthcare workers to read telling them what our specific kind of asthma symptoms are like (they really can’t be experts at knowing everything, I know I was one even though I didn’t work in the ER)……That we don’t have generalised “wheezing”, that we have issues down deep in our lower lungs… that we can’t talk easily, that it is EXHAUSTING to do so, so please try to limit your questions and not ask me to repeat this to 10 different people, and that we need to sit up or lean forward to breathe, etc. The respiratory therapy department could probably assess immediately what actions would need to be taken to balance our O2/CO2, etc. pronto. Too bad they’re not always on hand immediately….good luck to all! I wish you the very best !

  • Lorene Alba, AE-C moderator author
    2 years ago

    I’ve thought about that! What could I pull out of my purse that could speak for me when I couldn’t speak for myself?

    Asking for a member of the respiratory team is great advice. Thanks for the well wishes and right back actha!

  • portugal818
    2 years ago

    I have become hesitant to call 911. Fearful. Most paramedics are compassionate, calm and well trained so that panic does not exacerbate the asthma attack, but I have had paramedics who became angry because I “wouldn’t breathe” upon command and told me I had to walk to ambulance. Then when I insisted on sitting up and leaning forward so I could expand my lungs as opposed to laying on my back, the paramedic threw the equipment across the ambulance and cursed. He was angry I wasn’t compliant. It took everything that was left in my emotional arsenal to survive the trip to ER.

  • Richard Faust
    2 years ago

    So sorry to hear that you have had this experience portugal818. Nothing I can say is going to help in that moment the next time you are in an emergency situation. As you said, most of the emergency personnel are professional and do their best to help. Please remember that if you are in an attack you believe requires emergency care that you need to place the emergency call. It is not worth the risk of inaction.

    If you do encounter one of the few who behave unprofessionally, actually exacerbating the situation, please report them. It may not be something to worry about in the moment, and may be in fact something to do days later, but doing so is the only way that change will occur.

    Please know that you can always come here for support and information or simply to vent. Wishing you the best. Richard (Asthma.net Team)

  • RenatatheBos
    2 years ago

    Very scary and thankful you pulled through it! Thanks for sharing!!

  • JanetH
    2 years ago

    That’s a scary story! Don’t blame yourself too much about not calling 911. When you’re in the throes of something like that and alone, it’s hard to think rationally at times, and I know we’ve all hesitated to go to ER. What I found scary is that the ER staff seemed so ignorant of how asthma could present, as if wheezing is the only format. I rarely wheeze myself, but yes, I do have asthma!

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