Robert B

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 onl…[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 2003.…[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 years.…[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 cha…[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 time.…[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 a…[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 lu…[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 lat…[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 infections…[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 adva…[Read more]