Does anyone know anything about Interstitial Lung Disease? Please read below.

I'm a 25 year old mother of 2, and I was recently diagnosed with interstitial lung disease. Everything I have come to read online is not very positive. I have to wait months to see the specialist and am looking for some answers now. I've been experiencing a lot of constant pain that fluctuates in degrees of hurt in my chest along with difficulty breathing. Is this possibly my condition worsening? At what pace can that happen? What should I be expecting in the future...? I just don't know what to think or expect and I'm really worried.

Greetings: I am so sorry to hear of your situation. One concern I have is the time until you see a specialist, which should be remedied - you may need to appeal to see someone. The breathing difficulty is part of this disease, but the chest pains could relate to your heart, which is very serious. No one can predict the pace of this but you should be talking to someone about a lung transplant right now. It takes a long time to be assessed for that and get on the list, and the sooner you do that the better your outcome will be. Where are you geographically? We may be able to assist with your physician need. And please go to our website at www.coalitionforpf.org to read more or call us at 888-222-8541 to talk to someone immediately. The Coalition for Pulmonary Fibrosis would like to help. Sincerely, Mishka Michon, CPF