Virginia, you've got a friend here, hon! I, too, have interstitial lung disease and it took too long to nail it down - meaning I was too far along to have a biopsy (doc thinks I wouldn't have survived it). - because I was a smoker, unfortunately, the first diagnoses by other doctors was COPD until my new doc did a pulmonary function test, and lo and behold, the result was restrictive rather than obstructive...and my test results had also done a nosedive from the year before, so...we changed gears and started treating me for pulmonary fibrosis. They figure the flavor I have is NSIP - though my doc at first thought it was BOOP, but it's not acting right - so he's finally conceding that it must be NSIP, which unfortunately for me, has a very low survival percentage (70% 5 years, 30-40% after 5 years (5 years are up in 2013). BTW, I can't say BOOP without thinking of Betty Boop <G>
I know where you're coming from...mine's steady degenerating - getting worse all the time without remission. BTW, are they absolutely sure it's BOOP now? I've heard that pulmonary fibrosis can sometimes change its stripes - i.e., look like one thing but be something else as the disease progresses. Might not be a bad idea to get a 2nd opinion from a teaching hospital in your area. I know all about fatigue, weakness myself. After my 1st bout of cellulitis (about the 55th hospitalization since 2004), I was so weak I couldn't hardly move. Another couple bouts, and I conceded to going to a rehab, and I'm getting SOME of my energy back, but not much. My daughter is a l ifesaver (in more than one way - she did CPR when I stopped breathing back in March of 2011 from a flare that was totally 'out of the blue' - felt like going to church. Daughter drove there pulled into the parking lot and was getting my ramp out of the van when I said "call 911 I can't breathe' - and stopped breathing (my pastor's wife calls me Lazarus now) - she did CPR until the paramedics got there) and cooks for me and cleans the house - I also have a homemaker. You might want to look into what the state has to help you if you get state assistance? Do you get Medicare??
Hang in there...it's not easy, but you'll make it! I've had 60 hopsitalizations, two intubations and 3-4 ICU stays, so...if *I* can do it, you can too