Here is a comment I made on the Team Inspire website, and one reply I got which does cause me some concern. I would like to know what others think.
Comment:- I bought myself a pulse/oximeter online to monitor my oxygen saturation during exercise. I have been diagnosed with IPF after a VATS biopsy. I do get breathless, especially when going up too many stairs. My normal resting sats are about 95, but when I exercise they drop to about 83, but this does not stop me, I just keep going. Pacing yourself so as not to become too breathless is my advice, and if you do become breathless, then take a rest.
I realize that lots of people with IPF are much worse off than myself, I do not need oxygen, and hopefully will never need it.
I am 56 yrs old, and I am concerned how this lung disease is going to affect me as I know it is progressive.
I personally think your body tells you when you need to slow down, and that is all the advice I can give at the moment.
Best wishes to you all with this awful lung condition,
Reply:-And side note to Tony....pacing yourself will not stop organ damage. You're right, don't stop exercising...but use supplemental oxygen while you're exercising so your saturation level never falls below 90. If your oxygen is falling to 83 you most definitely are doing internal damage. This is a progressive disease, but the side-damage you're doing could kill you before the pulmonary fibrosis does...or can make your quality of life drastically worse. You cannot stop the progression in the lungs, but you can keep the rest of your body working properly longer if you use supplemental oxygen when needed. Please talk to your doctor about dropping to the low 80s. Feeling short of breath is not a good indication of how bad your saturation level is. (for example, I do not feel short of breath until my saturation level is in the 70s...and that is shortly before I get dizzy and pass out.) Your body will not tell you about the internal damage until it is too late...the heart attack or stroke will just happen one day. The warning you're getting now is the number that shows on your pulse oximeter. Below 90: Danger! You are doing internal damage! More oxygen is needed, stat!
Is this information true? I would be very grateful to hear what you all think. I am not going to stop the exercise as it is something I have done for years.
Most of the members on the Team Inspire website are American, and they can be a little dramatic about things sometimes. So I would love to hear what my fellow Brits think. Cheers.