Symptoms and Diagnosis

I was at the beach, and it took me thirty minutes to get from the hotel room down to the beach. And I couldn't walk the fifty feet to go from the pier to my beach chair, and I just knew something was wrong. Somebody’s got to be able to help me. The first thing I was diagnosed with was bronchitis and I was treated with the normal antibiotics and steroids for a couple of weeks and when I didn't get better, I went back and they thought maybe you have asthma. So, they treated me for asthma. I saw nine different kinds of specialists and I finally found my pulmonologist that did diagnose me with aPAP. When I first saw my pulmonologist and I told him what had been going on, I told him that I couldn't keep living like this, which is not something I had told any doctor before that, and he actually took me seriously. He sent me immediately that day in his office to have pulmonary function testing and he sent me for x-rays. And as soon as they came back, he came back in the room and he was like “I don’t know you walked in here from the parking lot”, because my lung function was 43% - which is crazy that I was just walking around like that. He was like “I don’t really know how you’re still standing but a lot of things make sense and we’re going to get to the bottom of it.” I found out that there was a blood test to confirm aPAP after I was already diagnosed. A quicker diagnosis would have meant that I didn't miss out on three years of my life. For people that are living with unresolved respiratory symptoms, I’d say don't give up on yourself and advocate for yourself. Lung disease gets dismissed as all kinds of things. For me it was dismissed as anxiety, GI issues. If things are not adding up just keep looking for an answer. When you can't breathe, nothing else matters.