In the late 80’s I developed a lung condition that would just not go away, every other day or so I would get this horrible lung irritation and something would be “fluttering” in my lungs when I would breathe. It cause my to practically cough my guts out trying to get rid of these little plugs. After a couple of months of this I finally convinced my primary care physician to send me to a specialist because she had no idea what it was and why it was not going away on its own.
I went to see a pulmonary specialist and brought a couple of the plugs I was coughing up. He didn’t even need to call for any tests, he just said
“You have ABPA, I am going to prescribe a 10 day tapering course of predisone and 30 day course of amoxicillin”.
I did this and with in a week and a half, things got really bad fo a few days, what I was coughing up was horrible. He had warned me about this and told me not to worry, that was my lungs cleaning themselves out as the fungus started to die off in large numbers. I also was feeling tired and lousy, he had warned me about this as well, the dying fungus releases mycotoxins into the system.
Finally it was gone! I was so relieved.
I went for several years with no problem and one day it was back. This time I was a Kaiser patient, and at this time Kaiser was going through a phase where you had to go through a nurse practicioner before you could see a doctor. She ordered a chest x-ray, and the another and another. I think I may have had 8 or 10 of them! She said that there were “shadows” that kept moving around and she could not figure it out. I finally got fed up and demanded that I see someone who could do something about it because she would not listen to me that I knew what it was.
She relented and referred me to a specialist. I saw him and to my dismay, he was not familiar with the condition. He then surprised me by agreeing to prescribe the same treatment as the other specialist even though he was skeptical that it would work. It did work in just the same way as it had the first time. He then surprised me again by giving me another prescripion that was not dated and said that if the problem re-occurred I could just fill in the date and turn it in. I was flabbergasted! Something that made sense.
Fast forward about five years and I finally found a doctor who fully understood my condition. He had me go to the lab and have in IGe level test about every six months since he knew that when a flare-up is occurring the level will go way up.
Over the last few years I have been afflicted with the problem on and off, and to my surprise many times it will go away on its own with out treatment if I wait long enough. It always seems to come on in the fall. I am quite certain that I contracted the condition because I was into composting for my garden and every fall I would go out and turn the pile not knowing that I was exposing myself to millions of fungal spores! These days I have given up composting and make sure I remove the leaves before they have a chance to grow mold. I have learned to live with my condition and to be an advocate for myself with my doctors on what treatment I need to keep my condition under control.
You have to do the research and make them listen to you if they are not well versed in it! I am just very thankful that I don’t have some of the nastier forms of the disease that cause fungal balls, cavities, bronchiectasis and surgery. I am actually quite lucky compared to some, for me it is only an occasional nuisance that makes my lungs get tight and cough up plugs. I always have my bronchodilator around if I get really tight but I don’t have to use it all the time. The inhaled steroids that some have tried on me have never worked and sometimes seem to make the problem worse.
Jim Azeltine, Oakley CA USA