Oh Sass -- I'm so very sorry to hear this. There are several things that cause this; did they tell you what the cause might be?
Through dealing with my Aunt's breast cancer, I know the system all too well. I wish I were close enough - I'd take a crash course and advocate for you in a heart beat.
Sounds like the Houston Transplant Team is your next stop? There are a lot of questions I'd be asking, now, if it were me, but I can't/won't put them here.
As you absorb it all, please pass me any info you can.
I have several autoimmune diseases. Interstitial lung disease isn't an actual disease in itself . There are several lung diseases that fall under this category. But again this is the wrong forum. I just wanted you to know. Maybe a PM later when I get a handle. He said I will have to stay on oxygen unless I have the transplant! Otherwise my last CT scan looked somewhat bleak and had advanced quite quickly. Probably kicked off from the pneumonia I had in Feb! Still have to tell my children!
Thank you for you words! sass