• Posted by Nate on October 20, 2023 at 2:42 pm

    Hello everyone,

    First a bit of background. I am a late 40’s male who has been overweight his entire life. In my 30’s I developed sleep apnea and have been on a CPAP ever since. I also have had acid reflux for a long time (had ulcers in my teens). I didn’t do well with PPIs so have had to just deal with it. About 6 years ago I developed a chronic cough and constantly have to clear my throat, but the doctor said it was GERD. I have also been one to have bronchitis at least once a year and sometimes pneumonia as well. Also, covid hit me hard last year.

    Whenever I had bronchitis, pneumonia, or when I had covid, I could hear these crackles coming from my mouth. Fast forward to August. I felt bad enough that I did a covid test at home that came back negative. Also, I had the crackles. They were so loud that I could hear them just breathing with my mouth open. So I I make an appointment with my new GP. Due to the delay, I go ahead and get a chest xray ahead of time. I finally see the doc and he says xray was clear. He still prescribes me some steroids and antibiotics. He listened to my lungs but through my shirt and said it sounded clear. I take the meds and stuff but the crackles don’t go away. They might be less there or even gone one day, but they are still there.

    I make another appointment and he still hears nothing (still through clothing for auscultation). However, I came with recordings of the sounds of my breathing and pictures of my SPO2 sensor. He sets me up with a pulmonologist and writes a scrip for singulair. The singulair makes me feel a little better (or placebo effect), but doesn’t affect crackles.

    Next I see a pulmonologist who once more does auscultation through clothes and hears nothing. To be fair to them, I also had clearer breathing that day than any time in the past month. Strange how that always happens. I do fine on a PFT and when I did the walk, my SPO2 went up rather than down. We schedule the test where they check for asthma and you have to inhale this powder. I also played the sounds I had recorded with my phone.

    I come back for the second test but in the mean time I have gotten a stethoscope of my own (cheap one from Amazon) and have been checking myself. At this point I know when and where I can place it to hear the crackles, which sound like velcro. Being big makes it complicated. The next visit I take my shirt off when I go back so there is no choice. I also bring my stethoscope, find the location, and have them place their stethoscope there. They finally hear them and orders an HRCT. Also, asthma test was negative.

    So a week or two go by and I call and set up an appointment to get my results from the HRCT. HRCT is negative for everything except possible air trapping and potential spleen issues. So they say all good and clear and that maybe the noises are just caused by something in my upper airways.

    Currently I am going for a second opinion and taking my HRCT pictures with me.

    The thing is, I don’t want this to be what I have. It honestly scares me to death. However, the only thing worse for me is not knowing due to how much early treatment affects outcome. I think they all think I am crazy. But I can literally hear the crackles from my mouth if I lay down or lean back. I can also hear them in my lower lobes if I put the stethoscope on while slightly leaning back. It sounds like pulling velcro apart. However, HRCT was clear and doctors almost never hear the crackles, though they almost completely go away if I sit up or lean forward.

    Oh, one other bit of background, they did find that I had bradycardia after I had been telling people for years about my pulse dropping to the 30’s in my sleep and often 40’s when awake.

    I wonder though, can your HRCT actually be negative for everything and you still have issues, or is it more likely a case of human error?


    Noname replied 6 months, 1 week ago 4 Members · 7 Replies
  • 7 Replies
  • Jan

    Member
    October 25, 2023 at 1:02 pm

    Have you tried putting on your CPAP while you hear crackles?

    Does it make a difference?

    Have you checked with a cardiologist or worn a holter monitor to document your heart rate & rhythm? 40 is low if you aren’t an athlete. (I was a cardiology nurse when I was still working.)

    Best wishes.

    • Nate

      Member
      November 2, 2023 at 6:16 pm

      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.

  • Karen Martin

    Member
    October 26, 2023 at 4:33 pm

    Hi, Nate. Unfortunately it seems as if getting a diagnosis for almost anything these days takes a loooong time! Not to say your doctor is wrong, but is it possible the test reading was in error? Could the test have been faulty? I’m all for getting a second opinion. Crackles are nothing to be ignored and listening through your shirt is a waste of time that any good doctor should realize. I understand your anxiety over this. None of us want to have it but there are meds out there that can help a lot. Don’t give up! See about finding a different pulmonologist and take your concerns to him/her. Best of luck to you.

    • Nate

      Member
      November 2, 2023 at 6:17 pm

      Thanks for the kind words.

  • Nate

    Member
    November 2, 2023 at 6:47 pm

    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

    Member
    December 8, 2023 at 11:52 pm

    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.

  • Noname

    Member
    December 9, 2023 at 1:46 pm

    Hello, I was diagnosed with Progressive Pulmonary Fibrosis on August 16th 2023. When I first went to the doctors both told me I had pneumonia. Later they got in touch and said I did not have it. I kept having problems breathing and coughing so I went to the ER. They did a CT and found the PPF. The doctor came in and told me I had something new and there is no cure for it. He told me he knew a lady that had passed with my condition at the age of 33. I went to my PCP and he came in and told me he hated to tell me what he had to tell me but that the PPF was going to be what I would die from. I went to my pulmonologist and I ask him if he agreed with what the other drs said. He told me it was up to God and to pray. I have a terrible time breathing and use 3 different kinds of meds in my nebulizer. I wake up between 1:30 and 3 every morning coughing and having trouble breathing . My Dr. has not put me on OFEV but I seen it mentioned in my notes. I do not think my insurance will cover it and I am 66 on SS. So I can not afford it. I do not feel well anymore and can not do things like I use to. If I get in a hurry my heart rate shoots up and that makes the breathing worse. My PCP told me if my meds did not slow the PPF down that I would have 12 to 18 months to live. Has anyone else had this experience or anyone have the progressive kind. Need to know how you feel. I pray everyday for God to take this away because I know He can.

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