Does anyone have tips to help a sufferer with pulmonary fibrosis?
Michael, sorry to hear about your diagnosis. I was diagnosed in 2003 with IPF, and I am actually hanging in there. When I was first diagnosed, I lived in Salt Lake City, Utah and the air quality and altitude made my life miserable. I was on oxygen 24 hours per day and like you, could not catch my breath. The doctors put me on prednisone and my weight ballooned 60 pounds. I finally reached a point where I couldn’t work anymore, so I took long term disability (oxymoron for someone who is terminally ill) and moved to the Oregon coast. I am now off prednisone, lost 38 pounds, and only use oxygen when I exercise (I walk two miles every day). I use supplemental oxygen from a concentrator when I sleep (I also use a CPAP). This gives my lungs a chance to rest a little at night, and also gives my other tissues benefit from the additional oxygen. While there is no treatment, you can learn to live with this. If you will email me at support@terminaldisease.com and put “attention Barry M.” in the s
