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Dealing with Dramatic Highs & Lows as a Patient with PF.
It seems that following a diagnosis of a life-threatening lung disease, such as pulmonary fibrosis (PF), dramatic ups and downs just become part of daily living. At least, it has felt like this in my experience and it sure can be exhausting at times!
Sometimes these ups and downs, or as I like to call them “highs” and “lows” can happen in chunks, ie. a week of good things and experiencing many “highs” or, they can happen alternating and some patients have a good day, then a bad day immediately following. Unfortunately, the latter seems to be my experience lately.
As an example, I attended a concert a few weeks ago of a singer who has long been on both mine and my Mom’s bucketlist to see in person. It was a wonderful concert, and evening out with my Mom. I was glad I could go, even if I had my portable oxygen concentrator (POC) in tow and had to navigate walking up stands to our seats. The show was totally worth it! The next morning I drove back to work listening to the singer’s CD and was in such a good mood. It had been a long time since I’d attended a social event like this and as a result, I felt a boost in my energy and stamina for the rest of the week.
Unfortunately that quickly came crashing down when the very next day I attended a medical appointment for my IPF that did not go well. The joy from the social venue the night before felt stolen from me, and opposite to the joyous ‘high’ I was experiencing, suddenly I was faced with an extreme low in under 24 hours. This exhausted me, and while reflecting, I realized it is actually something that is quite common while living with idiopathic pulmonary fibrosis (IPF).
As a PF/IPF patient, do you experience these dramatic highs and lows in your own life?
If so, can you share with us some examples?
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