I am sharing my story because we need to talk about IPF . At first after being diagnosed it was on my mind when I woke and around the clock.
I had to get my head around it. It now has been 1 1/2 years learning to deal with it. To protect myself from COVID and not getting a cold was foremost on my mind. IPF is changing my life but I am learning to take it in stride as life happens. It’s a new life style. The medications available are supposed to stop the progression and I feel it is doing that.
I have been very tired most days but try to push myself to stay active. Sometimes it’s hard to get motivated.
Two weeks ago I was taken off a heart medication and suddenly I got a lot more energy and feel a lot better. It’s the not knowing that worries me the most. My heart rate is up and most likely trying to give me more oxygen. Thank goodness we have lung specialist that will answer our questions.
I currently take Sandos Pirfenidone 801 mg. Using this medication you need to stay out of any sun exposure. This happened to me and I had a bad rash which was very itchy. This will limit you going outside. If you do you must cover yourself well with protective clothing and a good sunscreen.
I wonder about trying another drug called Ofev, so that I would not have to worry about sun exposure. There will be other side affects of course. My question is how can I make the most of my life living with IPF. Loving life the best I can.