ILD/Pulm. Fibrosis

[Guest guest]

I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.