Frustrated and frightened

Let me begin by apologizing to whoever reads the following. It is long and rambling if only because the whole COPD experience has thus far been long and rambling. In the early 2000 time frame, I was told by a pulmonary specialist that I had COPD. Then the Department Chair ordered some sort of "advanced" pulmonary testing and after receiving the results told me that I don't have COPD....and then whispered as he left the room...."loose some weight." A few years passed and I began to have frequent "coughing uncontrollably and related breathing issues." Some doctor told me it was because of my sleep apnea. But I kept being put in the hospital for 2 or 3 days, given IV doses of Levaquin and then pills for home. By 2012, I was referred to another pulmonologist who had me tested and proclaimed that I had COPD..but a "very mild" case. He put me on breathable powder prescriptions and of course, albuterol inhalers. The numbers of "exacerbations" or "flares" became more numerous and my repeated requests to be retested in the pulmonary lab were brushed off with "you have a very mild case." More importantly, at my demand, I began getting sputum tests with each event. The tests consistently came back with "staph aureous" and the pulmonologist prescribed various antibiotics in the "cillin" class or his apparent favorite, z-pac. I would take the drugs, the symptoms would go away, the pulmonologist would declare me "cured." And then a week or so later, the symptoms would be back...difficulty breathing, coughing, sleeplessness, etc.. This went on monthly for nearly 2 years. In frustration, I found an infectious disease doctor who cleared up the staph aureous (I think) but also found a soil based mycobacterium happily living in my lungs...but she said it wasn't causing any problems and in any event, killing it was a long, brutal process that most patients would not complete. In the past 18 months, I have made innumerable trips to the ED. Always the same. Duo-neb, Solumedrol, prednisone in varying amounts and duration depending on the doctor's training, etc. This summer, I've had three bouts of pneumonia without anybody determining the organism causing it and two bouts of "pulmonary edema" for which they gave me Lasix. My cardiologist says me cardiac system is excellent. I am 76, so that was encouraging. Fast forward to the past month. I wake up in the AM and remove my CPAP mask and am immediately in a panic not being able to breathe in or out. I don't know how many mornings I have literally peed my pants in absolute stark terror. I am able to grab the inhaler and get a puff in....and then stand there bent forward for 10 or 15 minutes before the coughing begins and I am able to bring up phlegm. Then I use the duo-neb but it only lasts for a few hours at best. My primary care and pulmonologist both say it is mostly my anxiety that is causing the problems so they give me 1/2 mg of lorazepam. Hey...it makes me feel good...but quite tired....and does little to stop the panic from feeling like I can't breathe. I am becoming a recluse because I can't run the risk of peeing or crapping my pants from coughing in public. I am going to try a new pulmonologist, but am not hopeful.

Seems they just want to treat the symptoms and not figure out the totality of the disease. Yes...I have COPD...and I know its progressive and will perhaps be the way I finally die. I've done the so-called pulmonary rehab gig twice now...with no tangible results.

I am rapidly losing faith in the medical community to do anything more than move me through their precious system, medicate me, and forget me until I darken their door once more.

Am I the only one experiencing this sort of nightmare? If you who read this and have COPD think I am just being a psychosomatic blow hard, please tell me. I don't know what or who to trust.....but I would LOVE some quality of life in these so-called Golden Years.