John Kane

Call the manufacturer and ask about an Assistance Fund.

I was diagnosed with IPF last June. My father died of COPD/ emphysema and my mother did also, I was told. Both were heavy smokers. Last week, I found my mother’s death certificate which I had never seen before. IPF was listed as her cause of death.
Knowing what I know now about this disease, I am amazed that she had it. Never saw her near any o…[Read more]

The Mayo Clinic told me that 70 is their usual cut off age, but, since there is nothing else wrong with me (yet), they can consider an exception…I had a great visit there.

I also do not consider myself disabled, but I believe that I am early on in this disease. I did get a handicap tag but only use it if I have to walk a longer distance. I passed up a handicapped spot at the grocery store the other day. The gentleman who did take the spot was in far more need than me.

Charlene, I am about to start Ofev. Where can I find actual studies/stats on the success for this drug. I watched the manufacturers video, but that is their spin. Thanks, John

I already have a good harmonica but the pulmonica looks interesting. I wonder if this is prescribed as therapy whether Medicare would pick up some of the cost….

Charlene, I also use the Respironics Simply Go concentrator. It did not come with a backpack, just the shoulder bag. I did find, and buy a back pack for this unit, by Philips, on Amazon. My med supplier needed to order this, but I got it through Prime in 2 days. And less expensively.