Thank you so much for getting in touch. It was very kind of you to write such a lengthy reply.
I am also at the Royal Brompton and I too was referred in January 2012. I'm pretty sure we're under the same consultant and registrars as our diseases are so similar in nature.
Although I've been diagnosed, by the countries leading authority on the subject as having UIP there are still some question marks around it. The first and most obvious is my age and the second, I'm told, is my excellent response to steroids. I'm hoping the diagnosis is more towards NSIP rather than UIP because life expectancy is slightly more favourable although the journey is just as difficult.
Looking back over this year I can see how much my life has changed. Yes .. the medication is slowing the process for which I'm extremely grateful for but it's sad when I realise for the first time what I can no longer do, like walk around my local park, climb a flight of stairs without extreme exhaustion, go to my attic to get a toy for my son .. and so on. I'm loosing ability and it seems to be getting faster than ever.
I do have oxygen of cause and its helping enormously. I've got over the novelty of having it the house, fought against using it for as long as possible ( because it means I really am poorly ) and now have become accepting of it as a friend. I don't use it in public yet but I'm sure that's coming soon.
I go to the gym twice a week for an hour each time. I'm in the first month of a twelve week course. It is difficult. My blood / oxygen levels dip into the late 70's early 80's almost straight away so I have to struggle on through the exercise knowing that it could be dangerous for me. If I feel a bit dizzy I simply stop. With this said I always feel great the following day. My lungs and general well being seems virtually normal.
You're absolute right .. it is a hard disease to live with and the impact on the people around you can't be underestimated. My beautiful wife has so much on her shoulders not just in the home but also as our sole breadwinner. Our son is fully aware of my health apart from the prognosis. We tell him as much as possible. I want him to be informed and that there are teams of scientists around the world working on cures for the many lung diseases. I feel informing him empowers him rather than be a shock if this all goes the wrong way.
I must clock off for now. Thank you again for your lovely reply. I'll be thinking of you and hoping each day is an easy and comfortable one.