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Seeking correct diagnosis

I have never smoked but was raised in a home with a chain smoker. My childhood was lived in a blue cloud.
In 2012 I was diagnosed with asthma. I think occassional shortness of breath was already a common thing. I had reoccurring bronchitis my whole adult life. I have been on a multitude of inhalers, medications, and kept a nebulizer with albuterol at home for bed spells. I still only use it when I am having a bad spell. Most of the time it gathers dust.
This spring April and May were horrid for me and nebulizer was in full action mode. 3 rounds of prednisone, added spiriva respiment inhaler and ipotropium mixed with my albuterol to my nebulizer. Spent a month sitting up on sofa at night drowning in mucus, chest pain unbearable. Near end of April I noticed swollen glands and specific painful spots all over my chest but no other signs of infection they gave me a Zpack just in case. My regular PT handed me off to a full doctor. He ordered a chest xray. It came back "hyper inflated lungs and flat diaphram, no other abnormalities. DIAGNOSIS: COPD"
My doctor told me yes, I have COPD. Since I am already taking all the COPD medications there is not really anything to do. (This was end of May and I was coming out of the flare up) During May my spiriva had run out and I was much worse without it. He re-upped that prescription and sent me home.
I bought a pulse ox meter and sure enough my oxygen was low most of the time except soon after a breathing med. Mostly in the 91 to 94 range, but could range from 89 to 97. (It fluctuates alot and takes a while to settle. Is that normal?)
I found a pulmonologist but only got to see the PT in July. She looked at my records and said since I wasn't a smoker I did not have copd. No tests like I expected. She ordered an allergy blood test and said go see my allergist.
Alergy blood test came back no sign of allergies, but maybe in April it would have been different.
Went to the alergist and he did a spirometry test. My scores were 85% to 100%. So he said it didn't indicate copd, but I should really see the pulmonologist a get a high def cat scan ordered. I had had an second flare up end of June and swollen glands returned. (I am 59 and well past menopause, fyi)
Alergist upped my spiriva to the COPD dosage.
That dosage has been a godsend. I am so much better and oxygen levels are better + less thick mucus to spit all day.
Meanwhile, a diff doctor noticed my heart rate (as shown on the pulse ox report i printed) was way up from what it normally was. He said go to my heart doctor.
My heart doctor says something is definitely wrong, he thinks the heart is a symptom not a cause, but I have been wearing a heart monitor for last few weeks and he is doing the full heart scan next month just to get full data for whoever I find to figure it out. He suggests "maybe the pulmonologist, maybe an immunologist, probably a specialist at Stanford would be a good place to go. Be persistent."

I will get to the pulmonologist sept 6th. Help me to know what to listen for, what to ask for, and how to make the most of this appointment.
Also, wondering from you, was the lung xray significant? Should I be seeking respiratory therapy?
And bottom line, can a non smoker have copd? Can allergies cause this kind of lung damage?
What the heck is going on with me?


  1. Hi CM1202, and thanks for your post. It is always a challenge for a patient when several doctors, (providing care), do not consult with one another. Sadly, based on my experience treating patients, this is all too common! I generally advise patients to insist that all the doctors providing one's care collaborate with one another, all for the benefit of the patient! Perhaps, that is the self advocacy approach you may want to consider.
    You may be aware we cannot provide medical advice or diagnostics over the internet (for your own safety), but your concerns certainly warrant a reply.
    A chest xray results which reveal 'hyperinflated lungs with a flattened diaphragm), can be characteristic for some folks with a COPD diagnosis. This can be confirmed using other diagnostic tests to arrive at a definitive diagnosis.
    There are, in fact, other causes of COPD besides smoking. As it turns out, not everyone is aware of these etiologies. I thought this article, on that very topic, might provide you with some additional insight: https://copd.net/living/causes-risk-factors. I do hope you find the information is helpful in a practical way.
    Finally, there may be other medical conditions that can be associated with COPD. These are typically referred to as comorbidities. I thought this article does a good job of explaining that aspect of this disease: https://copd.net/living/comorbid-conditions.
    If we can assist you with anything as you move forward assessing your present health condition(s), please let me or any other moderator / team member know.
    You are always welcome here in our online community.
    Wishing you well,
    Leon (site moderator COPD.net)

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