A very good article but once again there seems to be the voice of doom about it, life expectancy and so on . I was diagnosed 6 years ago and told if I was lucky I had 2 years unless I could have a transplant. After losing some 3 stone to make a transplant more viable I was put on the list. I was on it for nearly 3 years without a call. I was then told that I was no longer a viable risk.
I am now in what my consultant helpfully calls the later stages of the condition and advices me to put my affairs in order. I have arranged with my community matron the level of care and intervention I will accept at the end. It all seems doom laden to me.
The thing is although I now need 4 lpm oxygen 24/7 I am still able to get around, albeit slowly in short hops and on a mobility scooter. This is with weather permitting of course. My wife. who has been quite incredible through the whole time, says that it's the power of positive thought as we both think that if you dwell on your condition it will only get worse but if you push yourself close to your limit it helps. I know getting close to your limit can be very uncomfortable and quite scary but it doesn't hurt you, you may feel a bit ropey for a few hours but the pleasure of doing something that you thought you weren't able to do far outweighs this.
What I'm trying to say is although IPF is a death sentence it shouldn't rule the way you live. Off course there are limitations put upon you but there are usually ways to circumvent most of them. ie: mobility scooters, liquid oxygen cylinders, stair lifts are but a few. Unfortunately we have to pay for all but the oxygen some help there would make a world of difference to a lot of people.
But overall we should not give into the condition but strive to say. You may get me in end but you've got a fight on you hands.
Keep well and think positively.
Re-Oxygen Assessment
BLF Twitter post.
PIP when on oxygen 24/7
Coronavirus – important advice from the BLF
