Hi, Jonathan, such a bummer that your service caused interstitial lung disease. What you say makes perfect sense. Beauticians using hair spray have also had lung damage. Agree with you & i feel that breathing in any oil can be detrimental for air exchange.

Thanks for your words of caution.

Jan

Hi, Will,

Interesting to hear of your experience with OFEV. I tried OFEV at two different doses but by the 4th day each time I was having severe nausea and then vomiting to the point of dry heaves for hours.

Didn’t get in to have liver enzymes checked tho.

Thanks for sharing your experience.

Jan

Have you tried putting on your CPAP while you hear crackles?

Does it make a difference?

Have you checked with a cardiologist or worn a holter monitor to document your heart rate & rhythm? 40 is low if you aren’t an athlete. (I was a cardiology nurse when I was still working.)

Best wishes.

I have your concerns also. At some point I will need a knee replacement or I will be unable to walk without a crutch.

I’m afraid I will have respiratory failure due to surgery and have to go on oxygen all the time.

If anyone has been thru elective surgery with IPF I would like to hear about their experiences.