I am an Army veteran from 1950s, and have 10% VA disability rating, but it has nothing to do with IPF. In 2017 the Minneapolis VA needed non-smokers from my age range to participate in a study. So I joined the study, and they gave each of us a CT scan.

One result of my CT scan was finding IPF in the left lung. I’ve been seeing a…

Read more

Like many people who have talked about the stunning moment when they learned they had this miserable disease, my first questions were: How do I slow it down? How do I find a good pulmonologist?

I should have also applied inverted thinking. Suppose I wanted to speed up the progression of fibrosis, what are the top five things I’d make certain…

Read more

Dear Priya,

Please email me the study you mentioned. harriganjj@gmail.com

And thank you for sharing your info and experiences.

John

Considering how much we, and other seriously afflicted people, rely on government health-related agencies for information, for research, and for health care access through Medicare and other programs, this could be a disaster. Samuel, if you know of a way we can support push-back efforts against this moves, please let us know.

I attended pulmonary rehab after being diagnosed with IPF in 2017 and catching pneumonia in 2020. I found it very useful, in part for the focus it put on cardio-vascular exercise. Also in part for the dietary class and background information classes that made it clear I needed a few lifestyle changes. I also liked interacting twice a week…

Read more

I contracted pneumonia twice since getting IPF, and the nebulizer helped immensely both times. I also use an albuterol inhaler as needed if my coughing is bad.

What I find more consistently helpful is watching my food intake. I think it helps to drink lots of water and reduce foods that trigger mucus buildup, like caffeine, alcohol, sugar,…

Read more

So sorry to hear that, Samuel.

Thank you Charlene, for organizing this forum. It is most helpful. Regarding your Ent visit, I was diagnosed with a deviated septum once and had the surgery to repair it. As a result, my nasal breathing improved dramatically. Of course, what worked for me might not work for others, and I was very young at the time. But I thought you should know this.

Frank,

I don’t know if this would work for you, but I got the Phillips Respironics SimplyGo POC, which has both pulse flow and continuous flow. It delivers up to 2 lpm, and it can be plugged into an electrical outlet for nighttime usage. At 10 pounds, it is heavier than the other POCs, but I found a mesh backpack for it, which makes it very… Read more

Mucous induced coughing has been a problem for me. Googling dietary triggers for mucous buildup, I found a number of things I never consumed much of in the first place, like sugar, soy, deep fried foods, excessive amounts of red meat. I find it completely impossible to cut out coffee, which is a trigger, but it was easy to find substitutes… Read more