I was diagnosed with ILD 2.5 years ago. I have an outstanding pulmonologist in Northern Virginia. One of his first comments to me was “Don’t Google this! If you do, you will read that you have 3-5 years to live and that is no longer the case. We have progressed far beyond that prediction.” So, I never Googled it! His other important piece of advice: “Walking is super important.” So, I
Have walked almost every day for the past 2.5 years. I feel fabulous and he has been decreasing my Cellcept for the past year. Hang in there!

Hi Colleen,
Although I havent been diagnosed with pulmonary fibrosis, they were querying ILD at one point. My pulmonary specialist was also very robotic and not helpful regarding my questions. One question I have for you or anyone is diet. I asked him what's the best diet for a lung issue and he said he does lungs not dietary so ask my doctor. My doctor said he didn't really know because hes not a pulmonologist! So I changed my diet up but soon I was very cold all the time and not a ton of energy and my blood pressure which used to be high, has gone down a lot. One morning was 99/66. I'm thinking diet related. The pulmonologist insisted I lose weight so I cut out salt sugar, dairy, packaged foods etc but I feel lethargic. So now that I've added back in some more things I'm finding when I lay down at night my lung crackles are really noticable now. Yet vanish when I'm upright. He wants me to lose another 50 lbs (50 gone already from my 2022 hospital stays) and my doctor wont refer me to a dietitian. I also have GERD so theres more no no foods there too. I'm frustrated at the lack of help and answers from the medical community
Thank you!

My spouse has idiopathic pulmonary fibrosis and I can see that pulmonary rehab is helping; 3x week, 12 weeks. His attitude is always positive and his determination amazing. He is 84 and spends much time either in/on bed but won’t give up or speak of it. Be your own advocate! No one ever prescribed rehab until we asked for it.