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Charlene, thanks for the info–I’ll try again!
Al, thanks very much for your post; I”m very sorry for your prostate situation, but the pulmonary fibrosis info you posted is very helpful. In support of that, here are some observations I’ve made in the 2+ weeks since my original post.
1. I’m not yet on Ofev–still in the approval process.
2. I, too, believe that if I took the breathing test again now, I could score higher. I went into it the first time somewhat casually and actually goofed up one part (in trying to expel the last little bit of air from my lungs, I coughed on a couple of tries–this was due to nasal congestion collecting in my throat, not pulmonary fibrosis).
3. For the last week or so, I have been monitoring my oxygen saturation levels. My resting level seems to be 95%; I realize that my normal breathing pattern is shallow–I never had a reason to think about it before now. So in order to investigate that further, last Saturday, after working in the yard for a couple of hours, I walked briskly from my workshop to my office–a total elevation difference of three flights of stairs. As soon as I got to my office, my oxygen level was down to 91%, my pulse rate was about 112 bpm, and I was breathing a little harder, but not much. However, within less than 30 seconds, my oxygen level was back up to 95%. Within the next minute or so, my oxygen level rose to 98% and, as my breathing settled back down, decreased to 95%. So, I believe so far that my lungs are working well.
4. I have a “second-opinion” appointment right after Thanksgiving with perhaps the best interstitial lung disease pulmonologist in the Atlanta area (recommended by The Cleveland Clinic). So, we’ll see how that turns out; I’ll report back here.
Charlene (or anyone else),
I keep getting these errors when I try to reply to Alfred’s post.
ERROR: Slow down; you move too fast.
ERROR: Your reply cannot be created at this time.
Do you know why that might be?
Thanks for the replies, folks!
Charlene, thanks much for your post. In answer to your questions, 1) my primary care doctor heard crackling in my lungs over the last two or three visits–she ordered the HRCT and referred me to the pulmonologist and 2) in previous times, I have not been as diligent about wearing a mask as I should have, but over the last several years, I have.
One other thing I failed to mention is that I’ve had GERD for perhaps 25 years and I’ve read about the circumstantial link between GERD and IPC (knowing that a causal link has not been clinically established). At times over the last 25 years, I’ve had three or four esophageal dilations and was diagnosed with Barrett’s Esophagus, a potentially chronic pre-cancerous inflammation. At times in the past, I’ve had a few instances of stomach acid in the back of my mouth while asleep at night. However, for the last several years, based on a regimen of two Prevacid OTC 15-mg capsules daily, the GERD seems well under control and my last esophageal dilation did not show the Barrett’s Esophagus.
Michael, thanks for your comment. I don’t have any idea what to blame my diagnosis on–it was my pulmonologist who diagnosed it as IPF, but as I said in my original post, I got the idea he was treating it as IPF to get started on the treatment as early as possible. I don’t have any symptoms at all; in fact, I consider myself to be very healthy (well, notwithstanding hernia surgery, hip replacements on both sides, and the GERD…). I am very active. The pulmonologist said it is unusual for a patient not to show symptoms; that’s what led me to seek the experience of others on the forum: perhaps if it turns out not to be IPF, it won’t necessarily be progressive.
Terry, thanks much for your explanation of the differences between IPF and HP. I will definitely do some research on that possibility.