PF and symptoms

Posted by ktgirl @ktgirl, Jan 9 9:29pm

I've been officially diagnosed with pulmonary fibrosis for about a year. I'm not on oxygen or Ofev yet. The diagnosis came after my second knee replacement which went well but about a month after that I got pneumonia and that lead to the diagnosis. Prior to that I was told I had interstitial lung disease. It wasn't really talked about being fibrosis. I was rather run down and out of shape from two knee surgeries in a little over a year so I was told to try and exercise after the fibrosis diagnosis and that would give me more strength and endurance. So I have purchased a NuStep machine so I can exercise every day. I've been doing that for almost 3 months. However I still am not able to stand for an hour while cooking or cleaning. I sometimes feel like I could faint. My blood oxygen level is over 90. I've read other stories of people who are able to walk up to 2 miles and play golf. There's no way I could do anything like that. I can walk maybe 10 minutes at once and then I'm wiped out.
Does anyone else have symptoms like this? Is there something that the doctors are missing? I've seen a cardiologist and my heart is good so that isn't a problem. I'm rather frustrated!
Any suggestions would be appreciated!
Thanks,
Carol

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Here is a note for anyone on Prednisone for their pneumonitis.
I tend to have low potassium and in fact have a prescription for it. So, I check my drug interactions always. I found that Prednisone lowers one's Potassium. My Pulmonologist also gave me Bactrim to take while I was at 20mg and above of Prednisone. Bactrim increases one's potassium. I adjusted my regular potassium dosage to reflect this and had my potassium levels checked periodically.
These drugs really do impact things. Earlier this summer I had just 10 days of Bactrim alone and took zero additional Potassium. I had the highest reading ever just from the Bactrim.
And even after stopping the Prednisone and taking my full dose of Potassium, I still had a reading too low.

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