My name is Margot and I am 70, I was diagnosed with IPF 5 years ago. When my GP told me what I had, he said and quote "you have something called Idiopathic Pulmonary Fibrosis, there is no cure so you better stop taking any medication as nothing is going to help you now, here I write it down for you, search it in the internet".
My husband nearly died when I told him. I contacted a private medical practice, saw a wonderful physician who told me my GP was wrong and referred me to the Brompton Hospital where I was treated with consideration and they have been helping me ever since.
I have done a couple of clinical trials. The last one was testing Perfinedone and Nintedanib. Couldn't cope with Perfinedon awful side effects. The trial company awarded me with Nintedanib, which hasn't been bad for me, only my liver was affected but after stopping it and restarting its not bad now, occasionally I have nausea but is not too bad.
Three days ago I got a visit from the oxygen man. I have been using it when I am very breathless and I get better very quickly, on my short walks I don't have to stop to take my breath anymore.
I go to the gym three times a week as exercise was strongly recommended. I want to live a bit longer.
So that is part of the story. Sorry for the long introduction.
Best wishes to everyone.