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Things about PF I wish I knew when I was diagnosed
Following your diagnosis with IPF, PF, or a related ILD, were there things you learned that you wish you had known about in advance? For me, learning that shortness of breath and low oxygen saturation are not necessarily related. You may feel short of breath, and your oxygen saturation level is normal. The reverse is also true.
What have you experienced that you wish you had been aware of in advance?
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4 Replies
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That it can “lay dormant” for a long time, then exacerbate a little, or a lot, on its own or with the help of an outside event of almost anything, ie; a cold, pneumonia, anesthesia, smoke, etc. That you can be going great at one moment, and wake up the next feeling like you are taking your last breath.
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Tom,
My care team described this as stair-stepping. I would show no progression, then I would drop, usually due to an event such as a cold or exposure to an irritant.
Sam…
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The availability of high pressure oxygen cannulas and concentrator tubing. My husband is on 10L of O2 and the noise was driving him crazy until I found and obtained high pressure cannulas and tubing. The noise is all but gone now!
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I know that made a difference. I wish supplemental oxygen suppliers would make this a recommendation when they see the level increasing.
Sam…
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