I play golf a couple of times a week. I don’t breathe well but I ride in a car and play in a men’s league so they put us on teams. It is easier not having to play your own ball.

I also started singing in the church choir about 3 years ago and it help me to strengthen my breathing.

I’ve been on liquid oxygen for 20 years. They don’t use it much anymore but I’m on 3L and do really good. I’ve slowed my pace but still play golf a couple days a week. I couldn’t do much of anything when I first starting using oxygen. My overall health improved dramatically. I was reluctant using it all the time but when I realized that I not… Read more

I was diagnosed with IPF in 2003, probably had it longer. I was concerned about the 3-5 years. I went to Mayo to find out. I was diagnosed with another lung disease in 1973 that probably caused IPF ( not sure) but it meant that IPF was not the primary diagnosis. I had problems breathing for about 5 years, but finally starting using oxygen in… Read more

Until 2 years ago, I coughed all the time and got regular lung infections. The pulmonologist said I shouldn’t have to get sick all the time. I started 10 mg of prednisone daily and 250 mg of Azithromicin 3 days a week. I’m still on 3 liters of oxygen and Tellegra daily, but I don’t cough very much and haven’t had a lung infection in 2… Read more

Randy, I’m only on 3 but I coughed all the time and had 7 lung infections in a year. My pulmonologist decided to try me on 10 mg of prednisone daily and 250 mg of Azitromiacin (?) three days a week. It has been almost two years and I’ve not had an infection nor do I cough all the time. I rarely cough. I even got by after having Covid. It… Read more

I was diagnosed with IPF in early 2000’s. I’ve been on oxygen for 19 years. Two years ago, my pulmonologist prescribed Trelegy as a once a day inhaler, and azitromiasim (?) three days a week and prednisone (steroid) once a day. Before these I coughed all the time and had several lung infections. I’m on 3 liters and function well most of the… Read more

I was looking at double lung transplant but due to Covid they were reluctant to push it through. Although, I was vaccinated, I ended up with Covid. Then shingles, and now gastroparesis. I can’t even process food.
I’m no longer considering a transplant. I’m doing ok on 3 liters of oxygen and don’t need more problems.

I’ve been taking 10 mg of prednisone for two years. I coughed every day for many years. I also take aurithromiasyn (?) 250 mg m-w-f. The two together have improved my breathing tremendously. Years ago I was on very large doses and gained 45 pounds in two months. I quit taking it but it might have saved my life. Bobby

I took prednisone in 1973 and gained 45 pounds in two months. I quit taking it but it helped my lungs. Years later, it was used as a rescue drug when I got an infection. I’ve been on oxygen for 19 years. I coughed all the time until two years ago when the pulmonologist put me on 10 mg daily send an antibiotic three times a week. I lost my cough… Read more

Prednisone, my first experience was in 1973 when I was diagnosed with hystiocytosis. I was put on 60mg. After one month and 25 lbs. I wouldn’t Continue to take it. 40 lbs. by the time I was weaned but looking back, it may have saved me from more damage.  In 2003 I started on oxygen and was diagnosed with IPF. I coughed a lot and had lots of… Read more

In the 1990’s I wasn’t getting enough oxygen and it caused my blood to thicken. I had to have a phlebotomy every 2 months for over 5 years. My blood was so thick, it was hard to function because I had no energy and my head hurt really bad. In 2003, a new doctor prescribed supplemental oxygen. I started at 2 lt and then went to 3 a few years… Read more

Mark, that is exactly the kind of story i wanted to hear while making a decision. My health has gone up and down, mostly down. It would really be great to know what normal feels like. Thanks for your note. Bobby

In 1973 i had a lung biopsy and was diagnosed with histiocytosis X. Then, later with IPF. Immediately, i was put on 60 mg. of Prednisone but quit after 2 months and gaining 45 pounds. Obviously, it helped to stop the degression in my lungs. On and off i had infections and bronchitis. Several years later, as i was having regular lung… Read more

I am diagnosed with Interstitial Pulmonary fibrosis.  What is the difference between this and Idiopathic Pulmonary fibrosis?

For a few years Spiriva and Advair cost me so much I looked for a solution.  I found a Canadian Pharmacy (directdiscount drugs)? and it cost me several hundred dollars less, without insurance, than with Medicare.  They came in name brands or generic.  They were from India.  I never once had a problem with them.  I had to order 4 weeks in… Read more