• This topic has 14 replies, 10 voices, and was last updated 1 month ago by Joe.
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    • #32457
      Joe
      Participant

      I am a healthy 58 year old who can run an 8 minute mile and hold their breadth more than 2 minutes. I went for a Calcium Scan after a friend of mine told me about it to check the status of my heart. I found out my heart is great but they found minor scarring of my lungs. This caused me to get a full CT Scan which came back with “The prone high-resolution images demonstrate subpleural interlobular septal thickening at both lung bases most compatible with subtle changes of pulmonary fibrosis. No honeycombing is seen. No bronchiectasis is evident.”. Also, there was “Evidence of old granulomatous disease.” I saw a pulmonologist who gave me a PFT which came back with FVC of 122%. ILD panel was all negative. I have no idea if this is progressive or not progressive and my pulmonologist is taking a wait and see attitude. When I ask if it is progressive or could have been caused by some type of childhood sickness I had or something I don’t remember, he just says he has no CT Scans to compare and he sees a moment in time that just states I have minor scarring so wait and see. This is obviously freaking me out after reading the 2-3 year life span, etc. Any thoughts on my condition and am I incorrect to hope that it is non progressive due to so little evidence? Thanks!

    • #32468
      Colin O Driscoll
      Participant

      Dear Joe,
      I wouldn’t worry too much. An FEV of 122% means that you are doing better than average for your age, as also indicated by things like being able to do an 8-minute mile. I would just ask for regular monitoring, say every 6 months, just in case there’s a problem.

      Even if you have an ongoing PF, the decline time varies a lot. I had CHP before my transplant, and it had been diagnosed 7 years previously.

      Colin
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    • #32469
      Linda Maguire
      Participant

      Joe,

      I agree with Colin.  A lot can depend on the cause of the fibrosis as to whether it will progress or not, but it sounds like you’re in great shape at the moment, so I wouldn’t stress about the fibrosis.  It sounds mild, but should probably be monitored every 6 mo. to a year with a PFT & 6 min. walk & annual HRCT to observe for any progression.  I was diagnosed with IPF 6 years ago after seeing my PCP about a chronic cough.  I have remained stable since that time, & my pulmonologist thinks my fibrosis may have been caused by “silent” reflux that had not previously been diagnosed.  I am treating the reflux only at this point, and so far my PFT’s, 6 min. walks & HRCT’s have remained stable.  Keep exercising & best wishes!  Linda

    • #32470
      Bruce Hawn
      Participant

      Can certainly understand your freaking out.  I am sure all of us can.  Colin is right, everyone is different.  I am 62 and while I only discovered it 2.5 years ago, turns out a 2009 CT Scan revealed I had IPF back then.  13 years and while I don’t have anywhere close to your FEV, I feel fortunate in that I only have to be on oxygen at higher elevations, and can still do most things I like.  Everyone is different.  The other thing to be aware of is that Covid causes a form of pulmonary fibrosis, so there is a lot of research being done world wide that will end up benefiting the IPF community.  Keep running your 8 minute miles and enjoy life while you can.  I pray, your pulmonologist has to wait a very long time.

    • #32471
      Raymond Petit
      Participant

      I was diagnosed 10 years ago my pulmonary doctor put me on Esbriet could only sty on for three months due to side effects he decided for me to start on Ofev that was good for about 5 years side effects started especially diarrhea he took me off for six months took X-rays saw no changes he told me to stay off for another six months he did X-rays saw no changes so he decided to stay off medication for a year and do X-rays up to now I’m checked once a year so far no growth it’s been about 4 years also my oxygen has been between 94-98 I’m not sure but during these time’s I’ve been taken 50 Mg of Zinc not sure if it helps but it’s not having any side effects I’d check on Zinc data

    • #32474
      Cu
      Participant

      Hi Joe. I too freaked out after an anesthesiologist said to me while putting me out for an unrelated procedure “By the way, you know you have pulmonary fibrosis.” I did all the research, got all the tests and continue to follow up with a pulmonologist. The good news is, I have zero symptoms, do not require any special treatment, and have not progressed from my mild diagnosis in 12 years! So please relax and know that PF does not have to be a death sentence. As for the anesthesiologist, I wish he never would have told me! Maybe you can just forget, too. I hope so.

    • #32478
      Jonathan Poland
      Participant

      When full-body CT scans were popular several years ago I ask my internist (and friend) if he would recommend that I have one.  He replied by showing me a medical journal article about how they cause more angst and worry than help because we all have internal problems that don’t need treating.  For example, my lung CT also shows a benign tumor on one kidney and a stress fracture on my spine – neither are cause for alarm.

      In your case: the radiologist’s wording is very technical and not in simple English.  In simple English it says that you likely have scarring in your lungs (“pulmonary fibrosis” is Latin for “scarring on the lungs”).  It also says that it is NOT ideopathic pulmonary fibrosis (IPF) – because there is no “honeycombing”.  Also there is no bronchiectasis which indicates that the scarring has not (yet) caused your lungs to stretch your bronchia.

      “FVC” is the computed full volume of your lungs, and yours are larger than most people your age.  I would like to know 3 other numbers from your PFT that are used in diagnosing respiratory diseases:  FEV1, FEV1/FVC and DLCO.  Those 3 are much more important than FVC.

      You will hear or read this many times on this forum: there are over 200 lung diseases.  Not all of them are fatal or even require intervention.  IPF is probably the most common on this forum, but too many people confuse the more generic term “pulmonary fibrosis” with the nasty variant IPF.

      IPF used to have a 3-5 year average lifespan after diagnosis.  It doesn’t anymore because there are drugs available now that slow (but not reverse) IPF progress.  Unfortunately, Dr. Internet has not caught up with the new research results!

      If I were you, I would not worry about this again unless you develop shortness of breath, chronic coughing, or other respiratory symptoms.  That would be the time for a new CT and a “differential” diagnosis to see if things have gotten worse.

      – jon

      Disclaimer:  I am not a radiologist or pulmonologist.  Heck, I am not a doctor of any sort.  I know what I know from dealing with my own disease and lots of research.

      ps Did your pulmonologist ask you if you had ever been exposed to asbestos?

      pps It could be a very long time until you need that 2nd CT.  By that time you might have changed doctors and hospitals; so get a copy of your current CT ASAP so that your future doctor will have something to compare.

      • #32494
        Christie Patient
        Moderator

        This is a great reply! Thank you for taking the time Jonathan! Even though you are not a doctor, you’ve done a great job of interpreting the results and providing information that is going to helpful for many people who end up here with similarly confusing and vague diagnostic information from their doctors.

        And Joe, like many others here, I would have to agree not to worry. Keep up regular surveillance, and get a second opinion from a pulmonologist if you are truly concerned. But as Jonathan has said, there is a difference between the disease we call pulmonary fibrosis (/the ideopathic version) and the pathology of scarring known as fibrosis. Since you lack further characteristics and symptoms of the disease, I wouldn’t be too freaked out. Just keep it in the back of your mind for your annual checkups.

      • #32506
        Joe
        Participant

        Jonathan,

        That has been one of the most detailed explanations I have had and is extremely astute based on all the reading I have recently done. Wouldn’t it be nice if my pulmonologist would have stated exactly what you had stated? First time I saw him, he wrote that I had asymptomatic pulmonary fibrosis. I was sent for an ILD panel after that and the panel came back negative. I then met with him and read his notes and he put me down as idiopathic pulmonary fibrosis which is why I turned to the forum. He may not have revisited my notes or whatever and always seems to be very busy. The PFT that you had asked about had FVC 122%, FEV1 120% and FEV/FVC of 74. My DLCO was 107%. You may know this but why would he have put me down as ipf based on minor scarring without honeycombing or bronchiectasis, excellent PFT, no history of drugs or asbestos, etc., and negative ILD panel? Did he use that instead of the week previous diagnosis of asymptomatic fibrosis because he doesn’t know where the scarring came from? If so, I assume there are different meanings of idiopathic pulmonary fibrosis? I appreciate any of your insight and thank you so much for responding previously.

        • #32511
          Jonathan Poland
          Participant

          Is it safe to assume that your pulmonologist is older (and perhaps not up on modern understanding of rared lung diseases)?  There was a time when “idiopathic” was a catchall term for all unknown lung scarring.  (That’s actually the correct way – I still haven’t figured out when IPF morphed into a specific disease.)  Now, usual interstitial pneumonia (UIP) or non-specific interstitial pneumonia (NSIP) is used for scarring of unknown origin…

          Anyhow, your PFT is extremely healthy.  FEV/FVC indicates how well you can exhale the air in your lungs.  I think it is safe to assume that it is lower than 100% because your lung capacity is above normal, and not because you have an airway obstruction (i.e. COPD).  Also, a FEV/FVC of well over 100% is an indicator of pulmonary fibrosis (PF) where the scarring restricts the lung volume but does not have exit issues.  This suggests that whatever is going on does not interfere with your lung function.  DLCO indicates how well your lungs can absorb oxygen into the blood stream.  Hence a low number is a major indicator of problems. Mine is in the low 50’s & I’m jealous of your number!

          If I were you, I would seek a second opinion if you feel the need to get reassured that you are still healthy.

          – jon

          Disclaimer – I am not a doctor or medical professional.  Please don’t base your diagnosis or treatment plan on my comments.

        • #32585
          Joe
          Participant

          Jon,

          Thanks for your response and here is an update. I am learning all this from a fire hose. The FEV/FVC was 98% so I read it wrong. The 74 was the recording but for my age, it was 98% so everything appears to be normal or above normal for a 58 year old who exercises everyday. I do have my appointment at Duke Pulmonary Clinic on August 11th. It was actually September 15th but I kept calling and picked up a cancellation.

          They are having me do another PFT and a 6m walk which should be fun since I can still run an 8 minute mile. So, I am praying very hard that I receive some positive guidance upon my visit. My view on this after hashing and rehashing over and over in my head is that it is more likely I have had this for years vs. catching it on a calcium score scan coincidently at the exact time when I am 58 that it is something that is progressing. The original day I found that my pulmonologist stated I had pulmonary fibrosis I bought a very good spirometer with a 3L syringe and the readings for the last 7 months have not changed at all. So, I’ll let you know what the doctor says at Duke in August. Take care!

    • #32479
      ChArles Bietsch
      Participant

      Hi I don’t know where you live , or if you are using a local / standard pulmonologist for evaluation

      There are a variety of types / conditions that cause fibrosis in the lungs. Ie infection, autoimmune diseases, etc

      To set you mind at ease find a pulmonary fibrosis center of excellence near you. Usually they are a specialized ILD department in a hospital

      It’s good that your PFT’s are strong, no honeycombing , no bronchestatis….

      Put your mind at ease and seek one out. I have known several that have relied on their local Dr, and waited too long before properly diagnosed

      Regards

      Chas

      • #32483
        Bruce Hawn
        Participant

        Good Advice.  My first pulmonologist wasn’t the greatest.  The Second, said wait, let’s first make sure it is IPF.  In particular he wanted to rule out Hypersensitivity Pneumonitis, which is something that mimics IPF.

    • #32507
      Joe
      Participant

      I would like to thank everyone for their thoughtful input. It really helps. Thank you!

    • #32510
      Maya
      Participant

      Hi Joe,

      I think your pulmonologist diagnosed you with IPF because your CT scan showed a pattern of UIP (usual interstitial pneumonia) which is associated with IPF. That means that the distribution (subpleural, basal and bilateral) and features (reticulation) of scars point to UIP. I would add, as others already have, that there is absence of honeycombing so it looks more like probable UIP, rather than typical UIP and because of this his diagnosis might be a bit rushed.

      You also mention evidence of old granulomatous disease which made me think of pulmonary sarcoidosis, which can affect lungs and cause small lumps of inflammatory cells (granulomas) which usually disappear on their own. Sometimes they can progress to fibrosis.

      But as others have said, you are healthy and fit and the scarring might stay the same or progress really slowly over many years.

      Hope this helps a bit.

      I am not a medical professional but have done a lot of reading on it…..

       

       

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