I first saw a pulmonologist in October of 2023. I was complaining of extreme tiredness and weakness and difficulty breathing--a heaviness in my chest. I had had a CT scan in Sept 2023, and was diagnosed with pneumonia, with interstitial lung disease and pulmonary infiltrates. The pulmonologist said he wasn't sure yet what was going on. He suspected an infection, but wanted to follow me for a year to see if the situation got better, worse, or stayed the same. He took a lung function test, and told me to exercise. I told him I could barely walk from my bedroom to my kitchen without feeling exhausted. He said to do as much as I could whether I liked it or not. Yeah, right. I saw him the following July with the same complaints, and he still wanted to wait for the next CT scan in 6 months before doing anything. I fired him.
I saw the second pulmonologist in October 2024. He did a lot of allergy testing and found nothing. After taking the second CT scan in Nov. 2024, he recommended that I get a broncoscopy. While waiting for the results of that, I was still complaining of the tiredness and heaviness in breathing, so the doctor prescribed Breyna. It made a substantial difference in my breathing, to the extent that I could begin to do some exercise, and get around a little more easily.
After I got my MAC with Pseudomonas diagnosis, the decision was made not to treat it. I was still complaining of the tiredness even though it had improved somewhat The pulmonologist said he didn't think it was because of the lung infections. I went back to my primary doc who saw that I had blood test results that suggested anemia. The count wasn't too low, but she decided to have me take iron. After 8 weeks I felt stronger and not as tired. Since then (April 2025) I have been exercising more and feeling better, and I had the energy to explore, thanks to this group, airway clearance, which is helping reduce my coughing. My next exploration will be into the world of nebulizing.
What I am learning little by little with this lung condition is that all kinds of things can contribute to the overall effect of how I'm feeling... And those "things" might not always be directly related to the lung issue. This may seem obvious to most folks, but I have been blessed with good health until now. It is a steep learning curve. Lots to learn.