breathing problems without explanation

I had a pulmonary embolism in July.  Since then I have had a horrid, dry, forceful cough, chest burning, chest tightness, and shortness of breath.  My newer CT scan shows my lungs as being completely clear of clots.  I ended up in the ER around 12/22 because I could not talk more than a few words without needing to breathe.  I also couldn't walk more than 100 feet without breathing heavily.  The ER did a CT and stated that they saw air trapping in the lower lobes that is indicative of reactive airway disease.  I was given a breathing treatment and sent home.  Here is the kicker.  When the cough started over the summer a pulmonologist ran breathing tests before and after a bronchodilater.  I was 125% to norm.  In the end she gave me an albuterol inhaler which helped tremendously.  My primary care doctor gave me a daily inhaler with both cortisone and a longer active bronchodilator.  When I got up to 2x a day on the daily medication I was much much better.  I was off it for about 4 weeks before I went to the ER.  After the ER trip I was put back on the symbicort.  After a week I was able to breathe well enough to return to work.  I know that in the summer I mainly coughed when exposed to outside air with allergens.  I was fine when inside in air conditioning.  Now, not sure when I am fine or not.  It seems that activity and eating can be triggers.  I went to see my allergist today hoping to get better management as since the ER the rescue inhaler has been used a few times a day.  I was told that I didn't need them as my spirometry had been above average.  So, why does the CT show it?  Why am I a mess?  What direction should I go in next?  Doctors are thinking I am panicking from the hospital stay over the summer.  People who see me though in these coughing fits are concerned.  I am concerned.    I need to have some help as a pulmonologist and an asthma/allergy specialist both think I am being paranoid and my PCP is great but I don't think he is equipped well enough to manage this.

[treebranches]

I'm sorry to hear you've had so much trouble and that your doctors aren't concerned.  If you're having to stop and rest every few words or steps, it's very hard to get through the day.

I'm not at all familiar with pulmonary embolisms as I've never experienced one, but I do know how hard it is to have the forceful cough, chest burning, tightness and shortness of breath.

While I have no medically-oriented advice since this is somewhat unfamiliar territory for me, I do think that there is something else going on to cause you this trouble -- clear CT or not.

When you go outside, try wearing a scarf over your nose and mouth to see if it quells the reaction and rest often so as to not provoke the coughing further.  If you're as unhappy with the doctors you've been seeing as you sound, it's time for fresh takes on what could be going on with your health.

In general, whenever you see a doctor, don't bring anything to their attention.  By that I mean simply state how you feel, what's been happening and convey that you're concerned because of the pain it's causing you.  If possible, take someone with you to also relay the message like, "Yes, I've seen the coughing and it has me concerned, too."  If you start off by saying, "I'm really concerned and none of my doctors are listening to me..." then it doesn't really look good.

This isn't to say that's what your doing, but just to remind you that the way to get things done is by giving all the facts you can so the doctors can draw their own conclusions, do their own testing and figure out how to help you in their way.

I hope that helps and that you start feeling better soon.