[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 only felt better but using it all the time helped my other organs to be healthier. I’ve tried the concentrator but it isn’t as portable. I wear a Helios 300 on a belt.

[Robert B]

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. I took disability in 2009.  I had trouble doing anything. Being on oxygen and medicine for a couple of years my health improved. I’m on 3L during the day and 4L at night. I’m 70 and have been on oxygen for 20 years and I’m in better shape than I was when I took disability. There are lots of things I can’t do but I can do almost anything I want too bad enough. I play golf once or twice a week wearing oxygen. My pace is much slower but the progression has really slowed. I have no idea on prognosis. It is just one day at a time and I’m grateful for everyday.

[Robert B]

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. The doctor says that my lungs have not decreased in the 2 years. It is the best I’ve done in years. Bobby

[Robert B]

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 changed my quality of life. I always used large does of steroids for recovery but haven’t needed to do that since I made the change. I thought I’d let you know. It sounds like it is difficult maintaining quality.
Bobby Bell

[Robert B]

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. I stay active with people and do as much good for others as I can. Plus I play golf twice a week. I don’t have near the strength I had years ago but I’m committed to never giving up to doing nothing, even though I seem to do nothing a lot of the time. I’ve got other physical problems but my attitude is still the most critical part. Bobby

[Robert B]

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.

[Robert B]

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

[Robert B]

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 and was able to exercise. I’ve gained about 10 pounds but I had lost 70 before that. I’m worried about the long term effects of prednisone but I’m not sure my life would be as good without it. Plus I had Covid and lived through it. I was glad I got the vaccination before I had it and will get the booster.

[Robert B]

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 lung infections using prednisone for recovery. In 2020, I moved and got a new pulmonologist who said 7 lung infections in a year were unnecessary. He put me on 10mg daily and arithromiacin 250 mg 3 times a week. I’ve been on that new regime for over a year. I don’t cough like I did and for a while I walked a lot until I got shingles and quit walking. I had not thought about it as a side effect but I don’t sleep well, ever. I’ll check with my doctor soon. I’ve been on oxygen for 18 years. I have multiple problems but I’m, relatively, healthy for all that is wrong with me. I am grateful to be on a small dose of prednisone. I hope I don’t see long term damage that I’m not aware of. I’ve recently been in conversation about lung transplants. I’m 69 years old and unsure if it would be worth it. I’ve enjoyed reading others issues. Thanks.
Bobby in Arkansas.

[Robert B]

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 later and took disability. I’ve been on supplemental oxygen for 18 years. I use liquid oxygen. I get winded but I’m still active, and even play golf with a Helios on a belt case.  I am fortunate to have been sick for so long and can still function. I can do much of what I want to if I want to bad  enough. Bobby

[Robert B]

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

[Robert B]

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 (up to 5 a year), i took lots of prednisone. I began having major problems in 1995. I began oxygen in 2002. I was still having lung infections several times a year and coughed most of the time. Early this year, a new pulmonologist didn’t believe i should have infections like that and have to take so many steroids. He put me on 10mg of Prednisone and an antibiotic 3 times a week. It is the first time in years that i wasn’t coughing all the time. I started walking and got up to 5 miles a day. I feel good but I’m still short of breath and I’m still on oxygen at 3 lt. I’m being evaluated for lung transplants. As I’ve heard a few others say, I’m not sure and don’t even know what to ask. My life is not as limited as it was a few years ago. That is one reason I’m wondering. I’m 68. Is it worth it to go through all that out entails. I’ll keep reading and may get some clarity. Thanks for this site.

[Robert B]

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

[Robert B]

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 advance.  My doctor faxed them.

Recently, I was prescribed a different drug to replace both of them.  It is Trelegy, once a day.  It seems to work better.  However, I also had to start taking an antibiotic 3 times a week and Prednisone everyday.  I now feel better than I have in years.  I’m walking 2 plus miles a day.  I’ve never been willing to try.  I’ve been on oxygen four 18 years but I’m stronger than I’ve been.  I will have a biopsy in 3 months.  By the way, Trelegy is a lot cheaper.