Patient with moderate, slowly progressing IPF
Living with IPF
What tests were conducted at diagnosis?
The whole biological part, blood tests etc, etc. At the time the doctors didn't know. Finally the pulmonology department send me to internal medicine specialists to get to the bottom of the problem. So it was now 2008, I had tests every 3 months to see the development of the 'illness'.
Can you describe how breathing feels?
When I am resting normally, things are practically fine. As soon as I do a more physical activity - climbing stairs - then that begins to trouble me. Even when speaking - just like now - and I get a little carried away talking about something, that's when I'm short of breath and that troubles me psychologically. There is the difficulty of catching your breath, and at the same time I am searching for my words and it is hard to follow my own thoughts. That is an example of how I am affected by the problem.
How has IPF changed your life?
It limits me with regard to physical activity. There is another point which is important, for example I no longer go to concerts or the theatre since I worry about upsetting or annoying others. I get the impression I am a nuisance, even if this is not the case. But I am going to refrain from mixing with others at group occasions due to this condition.