This topic contains 13 replies, has 8 voices, and was last updated by  Charlene Marshall 3 months, 3 weeks ago.

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  • #15533
     Marta Ribeiro 
    Keymaster

    Diagnosing pulmonary fibrosis (PF) is complicated. Symptoms can mirror those of other lung disorders like asthma, pulmonary hypertension or chronic obstruction pulmonary disease (COPD). Because of this, six different diagnostic tools are needed for an accurate diagnosis of PF, according to the American Lung Association.

    1. Chest x-ray

    Chest x-rays take a picture of the heart and lungs, which allows doctors to look for any shadows that may point to the presence of scar tissue.

    2. Lung function tests

    Patients are required to take a deep breath and then blow into a machine which measures the amount of air exhaled and the speed at which it’s exhaled. This helps doctors picture the level of lung damage.

    3. Blood tests

    Patients are asked to provide blood samples to check the levels of oxygen in the bloodstream and to see if there are any infections present. The levels of carbon dioxide and oxygen in a patient’s bloodstream can also be measured using an arterial blood gas test.

    4. Lung biopsy

    A lung biopsy is the removal of a small sample of tissue which can be studied to assess damage. This can be done either as a surgical procedure or during a bronchoscopy.

    5. CT scan 

    In addition to a chest x-ray, doctors may request a high-resolution computed tomography (HRCT) scan which will show the lungs in better detail. This gives doctors more precision than regular x-rays.

    6. Exercise testing

    Another way to discover how well the lungs are working is to take an exercise test. Patients will be required to either walk on a treadmill or pedal on a stationary bike for a few minutes, which will allow doctors to see how well the lungs are delivering oxygen and removing carbon dioxide.

    Did you go through all these to get your diagnosis? If not, how many did you have to go through? Share your experience below!

  • #15555
     Karl 
    Participant

    In my case all but the biopsy were performed.
    I started with coughing, out of breath, and dizziness symptoms I had been ignoring for about two months that led me to my family doctor, a General Medicine Practitioner. She ordered a chest x-ray. The x-ray Pathologist reported “possible” interstitial issues in the lungs. The GP then ordered a CT scan with contrast and referred me to a Pulmonologist.
    The Pulmonologist conducted breathing function testing, Spirometry, and the six-minute walk, reviewed the CT scan and diagnosed IPF. At the end of the visit she ordered extensive blood work to see if Idiopathic could be eliminated. It could not.
    Subsequently I researched experts in IPF for a second opinion and was fortunate to find a local Pulmonologist who specializes in IPF. She repeated the 6-minute, Spirometry and breathing function tests but said while it may well be IPF, she could not definitively confirm it until the cough complication was resolved. After curing the cough with antibiotics she repeated the tests and she made the positive IPF diagnosis without a biopsy, saying that biopsy procedures have significant associated risks and, while they are the absolute method of diagnosis, in my case the CT scan and other tests were sufficient for her to confirm IPF within a minuscule error.
    In my case I am at an early, mild stage of the disease. Fortunately for me the coughing, shortness of breath, and dizziness drove me to the delayed visit to my GP, ultimately resulting in early stage diagnosis.

    • #15584
       Charlene Marshall 
      Keymaster

      Hi Karl,

      Thanks for sharing your experience of early onset symptoms to diagnosis with us. I am always curious to hear about others’ experience, as I had no trace of a lung condition prior to March 2015 when I went overseas. I don’t believe that caused it, but like you I seemed to suddenly develop a dry cough, shortness of breath and feelings of dizziness that persisted for far too long. Its so strange how this disease develops, did they confirm then that your case is idiopathic? Mine certainly is with no history of respiratory issues in my family nor any type of environmental / household things that could have caused it.

      Did your GP or the pulmonologist ever think it was something else that IPF is commonly misdiagnosed with, such as COPD or asthma? They tried to tell me I had “adult onset asthma” but I knew that wasn’t right. Glad you were able to get an early diagnosis, and that your IPF is being managed as well as possible. Kudos to you for seeking out a second opinion!

      Warm regards,
      Charlene.

  • #15560
     Malcolm Mann 
    Participant

    All of the above, with the biopsy next week.

    As part of the biopsy I was asked if I’d volunteer to participate in a research study comparing open biopsy with a new technique of bronchoscope biopsy (transbronchial lung cryobiopsy). The trial is to see if the new bronchoscope technique gives similar results to the open method. The biopsy will be carried out concurrently by two leading pulmonary surgeons in Sydneys Macquarie University Hospital.

    If the trial is successful a less invasive biopsy will be available to future patients, I’ll report back after the procedure.

  • #15585
     Charlene Marshall 
    Keymaster

    Hi Malcolm,

    Sorry to hear you are experiencing all these unpleasant symptoms, indicative of IPF. The new method of biopsy you’re undergoing sounds interesting, and hopefully a lot less invasive. Thanks for volunteering to be part of this study, hopefully positively impacting patients in the future. Gooduck with the biopsy, we’ll be thinking of you. When you feel up to it, yes please do report back on how things went for you.

    Warm regards,
    Charlene.

  • #17640
     John Marshall 
    Participant

    I was diagnosed with pulmonary fibrosis in late 2017. The working diagnosis is that I have HP, although the differential diagnosis is IPF. The purpose of this post is to discuss objective measurement tools which can be used to see how I am going; more specifically to see the rate of my deterioration.

    So far I have worked out medical professionals have 4 objective measurement tools. First is the lung function test using quite an elaborate machine in what is almost laboratory controlled environment. I have these done every 3 months.  are measurements of SpO are assessments based on comparing CT scan results?  Is the 6 minute walk test. Are there any other objective measurement tools that anybody knows of?

    In order to monitor my own progress I can replicate a 6 minute walk test on flat ground on the promenade near my home. I can also fairly well replicate measurements of SpO using a program on my Samsung phone (called Samsung health). It seems to use the same technology as the more advanced devices used in hospitals and at the physiotherapist where I was once about to start pulmonary rehab. I have read in various posts on forums that people have measurements of the oxygen. I assume that they are using devices similar to the one I use. Does anybody else have a different way they measure SpO?

    I also found a home hand-held device which measures lung function to some extent; it is produced by MIR and is called smart one. I use it every few days to take a measurement. It seems quite variable and I think the main variability has been getting used to the technique as to how to draw in the large breath and how to blow. I think by a long way that accounts for the variations that I have experienced. For example when I first started using it I was not as good as I was in the 3  or 4 time but felt no better in those few days and put it down to getting better technique on the device. Are there any other easy ways to measure lung function at home?

  • #17641
     John Marshall 
    Participant

    Well that is a mess?

    Does typing in word then pasting not work?

    • #17645
       Charlene Marshall 
      Keymaster

      Good morning @john-marshall,

      Thanks so much for posting above! Unfortunately, copy/paste doesn’t work well when translated from a Word program to our forums, it shows a lot of code and gargon as it originally did. I went back and edited it for you though, removing that “mess” as you stated (good word for it) 🙂 No worries for this post, but in future, yes please don’t copy/paste if you can help it. Let me know your thoughts, and hopefully I captured your post okay through editing…

      Cheers,
      Charlene.

  • #17643
     Jean-Michel Fourrier 
    Participant

    @john-marshall I’m afraid Yes John, It is definitely not working …

  • #17733
     Robert Carlson 
    Participant

    @john-marshall,

    John, you might have better luck when using Word if you do one of the following:

    1. Compose your note in Word.
    2. Save Word document as either, a. Plain Text (txt) or  b. Rich Text Format (RTF)
    3. Copy your note from the newly formatted document (.txt or .rtf)
    4. Paste into the Forum Response note.

  • #17738
     Robert Carlson 
    Participant

    @john-marshall
    Sorry about this.  I thought I had a solution as a work around when working with Word, but it doesn’t work.  Once accepted by the Forum apparently the author of the note can’t delete it.  I tried.

  • #17757
     Charlene Marshall 
    Keymaster

    Hi @rgc-bob,

    You’re totally onto something – this is what our tech team advised too, re: saving .rtf or .txt format 🙂
    Sometimes the forum is still a little wonky though, this happens after the latest WordPress update and we’re still working hard to figure out why. Your post did go through, I didn’t need to approve it, I just editing it to remove the extra coding/weird formatting that appeared for some reason! However, I really appreciate your reply back to John as others will find this helpful too. Thanks for taking the time to write us about this.

    Charlene.

  • #19292
     Marianne 
    Participant

    My doctors performed all of the above except for the exercise testing by walking on a treadmill or exercise bike.  My cardo thoracic surgeon performed the VATS lung biopsy to get a precise diagnosis.  I see pulmonary doctor tomorrow to discuss results and where we go next on this journey.

    Marianne

  • #19294
     Charlene Marshall 
    Keymaster

    Thanks for sharing Marianne, I will be thinking of you and hope the meeting with the pulmonologist tomorrow goes okay! Please connect back with us if you feel up to it and let me know how you made out. Goodluck!

    Charlene.

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