Since the pulmonary hypertension doctors decided I do not have PH and the Addison’s test came back negative, this kind of put us back at square one for trying to figure out what is wrong with my respiratory system. My family thought it’d be a good idea to try out one of the big hospitals with a comprehensive care model so I applied to get into Mayo Clinic and Cleveland Clinic.
I was able to get into both clinics. I don’t know if that’s difficult to do, but it seemed like a fairly easy process. I decided to go to Cleveland because it’s much closer and traveling would be much easier. The main campus hospital is pretty easy to get to and has a variety of hotels in close proximity.
I ended up seeing two pulmonologists and we talked for at least an hour. They had me do pulmonary function testing before chatting and the results were the same as they usually are. The doctors seemed a bit stumped. We went over many details of my medical history including pneumonia infections, hospitalizations, past testing and ruling out of conditions and diseases, and medications tried.
The doctors stressed my roughly 30 years of pulmonary disease is quite complex and impossible to figure out in one visit, to which I completely agree. They seemed to think I was on a good path with my lung doctors back home and at UPMC. They couldn’t really think of any tests to run, inhalers to try, or fancy biologic drugs to trial. Their one idea was to give daily azithromycin a try. Most people know of this drug as a “z-pack.” In patients with obstructive lung disease, usually COPD, some see improvement with taking azithromycin as a prophylactic, precautionary medication similar to a corticosteroid inhaler.
So that’s what I’m doing. I’m taking antibiotics every day in addition to everything else. At first it was wrecking my digestive system, but adding a daily probiotic seems to have evened things out. The only hiccup I’ve ran into is when I had bronchitis and my family doctor wanted to put me on azithromycin, which would do no good since I’m already taking it. From here, we’re going to see how things are after a year. My other lung doctors aren’t confident I’ll see any significant changes, but it doesn’t hurt to give this a try.