Hi -
This is a long explanation, but I really have nowhere else to turn for advice. I want to make sure I proceed in a way that makes sense.
Me: 54 year old female, 13 pack year history over 25 years. COPD with some reversibility (asthma) FEV1 47%. No symptoms until I had the flu in June, then only symptom was a lingering tickle of a cough. No SOB. Lungs clear when doctor listens, and on chest x-ray and CT scan (only pinpricks of emphysema).
In the quest to get rid of the tickle, and before having spirometry, my primary doctor put me on QVAR, and gave me a nebulizer for albuterol and ipratroprium. She also gave me a rescue inhaler. It took weeks until I could even taste that these were drugs. I guess I was inflamed. The cough went away. However, the more I used the inhalers, then I got other symptoms: mucus in the throat, and feeling that I had to have the inhalers.
I saw an allergist in July who did the spirometry and found the obstruction. I continued on the inhalers. At a follow up appointment, she decided that I needed Symbicort. I took 2 doses. After those doses, on the morning of 9/11 I awoke very anxious, chest tight, like it was hard to breathe. I ended up in the ED. Where everything looks peachy keen - 100% sp02, etc. etc. CT scan and chest x-ray done. Symbicort was discontinued. And it is chalked up to an adverse medicine reaction and anxiety.
TWO days after the ED, I wake up in the morning and go to work. I ended up leaving work. I felt: weak, tired, nauseated, no appetite. Like I had the flu but no respiratory systems. Each day around 5-6 pm the sickness abates a bit and I can get around.
My primary doctor runs blood work. Pronounces I have mono. Tells me to go home and rest. I take a leave of absence from work since I cannot get out of bed. 3 weeks later...turns out the mono diagnosis was incorrect (doctor read one of the Epstein Barr titers incorrectly).
I get to see a pulmonologist finally on September 25 She (as have other providers) notes my high anxiety over my situation. I agree: I am anxious because I feel like crap, and no one seems to be able to figure it out. Pulmonologist prescribes Stiolto, once a day. For the first couple of days it is great. I have a digital peak flow meter that also does FEV1, and I was around 1.45, even as high as 1.65. A few days into it when I would take my dose however, I would cough the med right out. I also got a script for an ant-anxiety medication (BusPar).
I saw the second pulmonologist at Duke Health on October 3. He agreed with the Stiolto, and wants to wean me off some of these inhalers. I am having an upper GI endoscopy next week though, and he said we would wait. For me to come back in December. He also prescribed pulmonary rehab which I hope to start next week.
Well, here's the pickle: each day on this Stiolto inhaler I feel worse and worse. My chest is tight. I wake up in the middle of the night with a tight chest. My airways, for lack of a better term, feel like they are stuck OPEN. I am uncomfortable. While I am not SOB, my chest is heavy and I feel like my upper ab is pressing on my chest. I am having use my rescue inhaler 2-3 times a day. Even then, it is not working like it used to. My FEV1 on my handheld is usually now around 1.15, with some excursions to 1.3.
I am at my wit's end. Each day, I am worse. I am still on leave from work. This is the first time in my life that I have not been able to work, and it really isn't from the "COPD/asthma" but more from this mystery illness. But NOW I am finding it more uncomfortable in my chest. Part of me wonders if I picked up an infection in the ED on 9/11.
I am lost. I don't know which doctor to ask for help. I did message my pulmonologist.
ANY thoughts at all would be appreciated. I am seriously at the end of the rope.