[Nate]

What I will say probably won’t help you but here goes.

Ultimately, I think it is your decision what you want to do as it is your health and your life. I can only speak to what I would do.

I personally would need to know. I would push to schedule any an all tests as quickly as possible so that I knew what was going on with certainty. As far as the medication goes, I personally would want to start it as soon as possible if the diagnosis was IPF. Things can progress slowly or quickly. Also, you don’t now how you will react to the medications and if you will need to be swapped or if your dosage would need to be adjusted.

[Nate]

Another update. Cardiology report is fairly clear. So I can rule out CHF. Crackles are still there sadly. Doctors are pretty much ignoring me at this point. I am going to try to find a new pulmonologist at the start of the year. What pisses me off so much is that I have literal recordings of the sound and if they take the time and either let me lean back a little or they press really hard with the stethoscope, they can hear it too. However, being overweight, if they just touch the stethoscope to me, they usually can’t hear it.

Best of luck to everyone and enjoy the holidays. Hopefully I will know something in the next few months. I am already over the 4 month mark of seeing doctors with nothing. Once that HRCT was negative, they wrote me off. I have asked them several times “So the HRCT is negative but you can clearly hear the crackles. Can you tell what could be causing the crackles that I shouldn’t be worried about?” They never have an answer yet they still brush me off.

[Nate]

Sorry to hear about your situation. I will let others who know more speak about medications and alternative treatments when it comes to IPF and other such issues. However, my grandfather on my mother’s side had severe RA. My mother has had RA for a long time as well as other autoimmune issues. After recently dealing with cancer, her pain has really flared up.

I can’t speak from any type of medical knowledge, but I can tell you some of the things she is trying to do to help with her RA and autoimmune issues in general. She is going to try to help mitigate inflammation with her diet. What that is yet, we don’t know. She just had her CRP measured and will try an elimination diet and see what her CRP is afterwards. Assuming her CRP drops with the elimination diet, her intention is to have it tested regularly after adding foods back in.

If her dietary changes have no influence on her inflammation, we will be back to square one.

While it might not help, I can’t imagine lowering inflammation would hurt with IPF, or really any disease.

[Nate]

So an update to my situation. I have seen a second pulmonologist and he was about useless. He gave me a quick listen with a stethoscope and read the report of the radiologist. He then said that maybe it was fluid related and asked if I had a cardiology appointment. He also said that if the cardiologist didn’t find anything he had no idea what it could be.

That was so frustrating. He literally just read the radiologist’s report and didn’t even bother looking at the HRCT images I brought him. Oh and he did another walking PFT, which was once again normal.

If I am in a quiet room, such as my office or in my truck in an empty parking lot, I can hear the crackles without a stethoscope. Everything I am reading is saying that if you can hear them at your mouth, they are coarse and not fine. However, when I listen with a stethoscope I can hear them if I lean back and press the stethoscope hard against my back. Those sound like a few pops followed by velcro.

I followed up with a cardiologist and they want an echo and such, but the soonest I can get is three weeks from now. I hopefully will know something by December.

It is so annoying. It has been almost 3 months of me going to doctors and I still know nothing more than when I started other than whatever it is, it isn’t showing on xrays or affecting my PFT (yet). I have over 80 recordings of the sound I make breathing covering different times of the day, sitting position, laying down, before and after deep breaths, etc., but doctors seem to ignore it.

I read that an HRCT is only 60% specific for IPF, but I wonder if that means it misses it entirely or if it gets diagnosed as something else instead. They are saying my HRCT showed nothing at all. I can’t financially just keep blasting more and more tests, but I need to know what is wrong. There is no disease that benefits from you ignoring it or not catching it until months or years later.

Here is what it says:

“Central tracheobronchial tree clear and no pneumothorax. No pneumonia consolidation or worrisome pulmonary nodule or spiculated mass lesion seen. No evidence for diffuse interstitial lung disease. No interlobular septal thickening or ground glass opacities or cystic or cavitary disease. No bronchiectasis.”

That appears to say nothing is wrong at all. But if there is nothing, why am I sounding like velcro when I breathe? I have been intentionally losing weight and have lost about 50 lbs. so far. Hoping that if I lose enough, it will be easier to hear what is going on in my lungs.

Going to hold off on more pulmonology testing until after I get my echo. I suppose it could be CHF.

If my echo and cardiologist come up with nothing, are there any really accurate tests that you guys would suggest I get? Maybe an echo of my lungs? I need highest sensitivity tests. I can worry about specificity later.

[Nate]

Sorry to hear of your situation. I don’t blame you for wondering if there can be old scarring vs an ongoing condition. Nothing I have seen online even mentions that. It sounds like you have good doctors though and aren’t just being brushed off like I feel so many doctors do.

Might want to see if your CPAP is on the recall list. Apparently certain brands have been causing lung problems for some people. A friend’s CPAP was recalled due to possible issues where it can release chemicals that they would breathe up and not even know it.

[Nate]

Thanks for the kind words.

[Nate]

I did the 2 week monitor and it did see some drops. Average was 50’s with drops into the 30’s and some spikes as high as 140. I am severely out of shape so the spikes are when I did exertion or was nervous (as I often am). So those spikes brought up my average slightly.

As far as the CPAP, I have put it on with crackles as they are worse when I lay down or recline.