[Bill]

It seems to me that there IS a genetic component to IPF, at least is some cases.

My mother passed from it, along with 2 of my brothers.  Then I was diagnosed with it… at age 64.  My mother and brothers lived till age 55 or so.  I had a double lung transplant about 1.5 years ago.

My mother’s father passed from what regarded as complications of emphysema.  In those days,I don’t think they had the diagnostic tools to actually determine the underlying condition and looking at this picture, it’s highly likely he was actually suffering from IPF- all the symptoms he had are textbook.

 

Bill McKee

[Bill]

Yes.. since January 2017.   So far, progression seems to be very minor.  No idea if it has anything to do with OFEV though…

[Bill]

I was diagnosed with IPF in Nov, 2016.  Early stage.  Wife complained about my coughing and brought it to the attention of my doctor.  He listened to my lungs and heard the “saran wrap” sounds and sent me to pulmanologist who did all the scans, etc and diagnosed me with IPF.   The doctors who attended my brothers and mother all claimed there is no “familial” indication…. kinda makes me wonder what it takes to become “familial”….

My mother and 2 brothers were also diagnosed with IPF. Two passed in their mid 50’s and one brother in mid 40’s.

I went on OFEV in January 2017.  Side effects are dramatic, if you don’t take it with a meal!  I always make sure I have food when taking it now, otherwise vomiting and nausea.  Occasionally will have some diarrhea or cramping, but not bad.

My 6 month and 12 month check ups have shown no progression in the lungs, nor in lung function tests.   So far, so good.

Dr suggested OFEV because more convenient (fewer pills and less often), as well as other patients having experienced fewer or milder side effects.