My Asthma Journey

I had asthma when I was an infant until about 2 years old. I have not had any asthma symptoms until last year. I am EXTREMELY frustrated because I have gotten no where. All of this started when my chest was tight and I was hyperventilating. Since I haven’t had any asthma symptoms since the age of 2 I didn’t think it was anything serious but I took my rescue inhaler just to see if that would help.
After waiting a half hour of almost passing out my fiancé insisted we go to the ER (I didn’t have health insurance at this time so it was a difficult decision). We get to the ER and my heart rate was 160 so the doctors immediately started a whole work up and nothing came back. We got the run around with one nurse saying it was an asthma attack and the doctor saying it was anxiety. I have NEVER had anxiety nor do I feel or have ever felt anxious so I felt like that was BS. They sent me home and told me if it happens again come back. I left still with a high heart rate of 120 and tightness in my chest. The hospital didn’t do a breathing treatment because they couldn’t hear wheezing. Anyways I get home and it happens again. Go to a different ER hoping they will know more. End up getting a breathing treatment and the tightness went away. I was told to follow up with my primary care doctor and try and figure out why my heart rate was going crazy. We follow up with my PCP and she runs blood work and a bunch of other tests and of course nothing comes back so she prescribed Pulmicort along with Breo to see if that helps because she thinks that this is “anxiety”. (All of this started February of 2017) my symptoms improved for a short 7 months.
It was September and my symptoms started to return. I was deployed as a volunteer to help with hurricane Irma and ended up getting bad bronchitis from the shelters I was working in. The bronchitis got better but I still had reoccurring tightness and coughing but no wheezing. In November of 2017 i had another bad asthma attack where I was in the ER. The doctor there gave me 3 breathing treatments because of the horrible cough and tightness and order a bunch of blood work and AGAIN my heart rate was crazy at 150. They admitted me into the hospital for 3 days trying to figure this out.
Long story short my PCP discharged me bc he thinks that it was better as an outpatient thing. I was diagnosed with pericarditis shortly after the hospital stay (I had extra fluid in the sac around my heart). I was taking Motrin for the inflammation and those symptoms subsided however I was still dealing with the tightness and cough!
A few days before Christmas I couldn’t deal with the tightness anymore and called my PCP and he prescribed prednisone for me. I took that for 3 days and my tightness was improving until day 4 of the steroid. I had a horrible attack where my fiancé called an ambulance. We get to the hospital and the doctors say it was a bad asthma attack and to talk to my PCP about seeing a pulmonologist. I caught a stomach bug from being in the ER a few days prior and again my asthma flared up again had a bad attack with the extreme tightness, cough and couldn’t breathe. Went to the ER and was pumped with tons of fluids, got more steroids and more breathing treatments. The doctor gave me a spacer for my inhaler and sent down a respiratory therapist who says, yes this is my asthma flaring up and that I need to see a pulmonologist because I was in the ER twice within a week. This was the first week in January that I was in and out of the hospital. I called my PCP to explain I need a referral and she says she wants to see me first. I go to the appointment and she tells me she has a hard time believing that it is my asthma flaring up. HOW?!?!? I saw multiple doctors in the ER and they all said asthma! I am currently taking Pulmicort and Breo again.
My symptoms are improving but I am extremely frustrated with my doctor. Does anyone have any advise with a physician like this? Any advise on if I’m going crazy because I don’t have wheezing? Ugh I am so fed up with this I have been crying almost daily!

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Comments

View Comments (4)
  • babycakes
    12 months ago

    I was gonna say not every asthmatic wheezes sometimes i just close up and gasp for air with no wheezes sounds like you need a doctor that listens and im sorry i only had one of those and he was the best dr in the country dr sheldon siegels in LA calif but he passed away and i moved to a dif state …. if a doctor would listen he would learn so much from me for sure so Good Luck hope u find a good one and speak up even if they get mad

  • Richard Faust
    12 months ago

    Hi kassysteiger. First, let me express my agreement with Lyn that you have certainly had a difficult time and that if possible you may want to pursue a second opinion. In fact, in this article one of our experts discusses why it it is o.k. to ask for a second opinion: https://asthma.net/living/its-okay-to-ask-for-a-second-opinion/.

    As Lyn also noted, not every asthmatic wheezes. This article from the same expert discusses this fact: https://asthma.net/living/not-asthmatics-wheeze-not-wheezing-asthma/.

    For your protection, we cannot give medical or diagnostic advice over the internet, but you have had multiple medical professionals say they believe you have asthma and are having asthma attacks. Also, it appears treatments make a difference in your condition. As the article on second opinions notes, most doctors don’t and shouldn’t have a problem with yo wanting one. Wishing you the best and keep us posted on how you are doing. Richard (Asthma.net Team)

  • Lyn Harper, RRT moderator
    12 months ago

    Hi kassysteiger – You’ve had quite a journey the last year, haven’t you? Your frustration is certainly understandable.

    My first question would be – Are you locked into going to this particular PCP for insurance reasons? If not, I would consider a second opinion. If you must continue with this doctor I would have a very serious conversation about your need to see a pulmonologist. You certainly have a recent history of flare-ups that would justify a visit. Some of the tests that should be done are talked about in this article – which you could share with your PCP if you think it would help. https://asthma.net/diagnosis/

    Asthma can present very differently with each individual – some wheeze, some don’t. It’s obviously important for you to get this under control, manage it well, and get your life back. All of which is possible with the right diagnosis and follow-up treatment.

    In the meantime, continue on the treatment plan that you’re on. But, keep a log of any and all symptoms; when they started, how long they lasted, what you believe the trigger was, etc. This will help the doctor to get a better picture of what’s happening.

    Keep us posted.

    Regards,
    Lyn (moderator)

  • kassysteiger author
    12 months ago

    As of 2 weeks ago on Friday I was given Breo and that seems to have helped until yesterday. We were given directions to cal the office when my chest was tight and they will get me an appointment. Chest got tight yesterday called them and they told me go to er. They called back an hour later and said that they want me to come in tomorrow (today) but of course the appointments don’t work with my work schedule. Talked to my boss today and they let me leave early so called the office to get an appointment and now they can’t see me. So frustrated with this office that I finally said screw it and I switched PCPs. Waiting to hear back from the new office to see if we can get an appointment to see the new doctor to get this under control. This is beyond aggravating for me seeing that this attack is going on day 2 with no one even caring. Probably going to end up going to the er tonight if no one calls back with answers on what’s next. Ugh!!!!!!!!

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