Ron Reid

Hi Charlene:

Good to know about these complications and to watch for signs of them. But when I followed the link you provided, it only addressed the first complication and did not go further. Is there a way to see the rest of them?

Ron

A recent book that I found very helpful is With the End in Mind: Dying, Death and Wisdom in an Age of Denial, by Kathryn Mannix.  The author is a physician specializing in palliative care; the book is based around a series of stories of real patients.  Very well written and reassuring; I recommend it highly.  It is published by li…[Read more]

I often experience morning dizziness when I get out of bed, especially if I am moving my head from side to side.  Also get temporary dizziness when bending over.  My oxygen levels are OK; just seems to be something associated with IPF.

I might have missed this on the thread, but one very helpful accessory for the Respironics Simply Go Mini concentrator is a backpack for use instead of the usual side strap.  The backpack distributes the weight evenly when you are walking, and has mesh at the bottom to allow for air flow.  If you are still active in walking, etc. it is a g…[Read more]

Hi Charlene:

Another Canadian here – from the Orillia area.  I started Esbriet last spring; much easier to tolerate than Ofev for GI issues, but after I graduated to the full dose, I got a major itchy rash that persisted for months.  At first, only on areas exposed to the sun, although I had been careful to minimize my exposure and to use s…[Read more]