After many, many tests, it appears that
1. According to the docs, etc., I have Stage 1 Idiopathic Pulmonary Fibrosis (IPF) along with Pulmonary Hypertension, and perhaps a tiny bit of Pulmonary Dendriform Ossification (not confirmed). Idiopathic means they don't know the cause.
2. So far, the IPF has not affected my life in any way (except for a jillion MD and test appts!!). Although this is a progressive disease, the progression can be very slow or fast. In my favor are that I have never smoked, and keep in top cardio condition.
3. The Pulmonary Hypertension seems to not have affected my heart functioning at this time, and it is not number one on the "We need to fix/treat this" list. Likely caused by the IPF causing my heart to work harder to get oxygen into my system.
4. There are two brand new (and VERY EXPENSIVE) drugs out just since 2014, which appear to slow the progression. I don't know whether or not the insurance will cover it, but believe that UCHSC has ways to get the drug at a reasonable cost - we shall see. They want me to start on these.
5. I will be seeing National Jewish Hospital (top in the country along with UCHSC) on October 5th, and it is likely that they will confirm the diagnosis. But the diagnosis is not ABSOLUTELY POSITIVE and could change.
6. I will be doing a swallow test to see if I am aspirating from my stomach into my lungs Oct 11th. Also, some more blood work (they could not get much blood out of me at the last attempt.)
I appear to have many useful years of life ahead of me, unless there is some drastic change.
Last edited by gobicycling; 09-18-17 at 05:18 PM.