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    • #29183
      Lana
      Participant

      My husband was just diagnosed with moderate restrictive lung disease.  We are getting referred to a pulmonologist, so we don’t know yet what the cause is.  I joined this group because I’m looking for information so I can be as informed as possible when we see the doctor.  I would like to know what questions I/we should be asking.  What were the things that you wanted to know when you were starting on this journey?

    • #29211
      Phyllis Della-Latta
      Participant

      A diagnosis would require Pulmonary Function Test (PFT), CT Scan, X-ray, oxygen saturation levels & extensive blood tests. Sometimes a definitive dx requires a bronchoscopic biopsy or samples of lung tissue obtained by video assisted thoracic surgery (VAT).
      You would need to ask the pulmonologist what tests will be ordered.

      • #29224
        Lana
        Participant

        Thank you.

      • #29234
        Maureen
        Participant

        I am waiting too for a diagnosis- which is leaning towards PF. My respiralogist said I need a second CT scan (1yr apart) to confirm. So they may not have all the answers at your 1st visit. Keep us updated!

        • #29256
          Lana
          Participant

          Thanks.  I hope you can get answers soon.

      • #29257
        Lana
        Participant

        Thank you.  We’re still waiting for an appointment.

    • #29254
      Christie Patient
      Moderator

      Hi Lana @lana , to bounce off of Phyllis’s comment, a lung biopsy is one of the most conclusive diagnostic tests for PF, but it is invasive. From what I’ve heard, most docs tend to leave it up to the patient to decide if they want to do it. It could expedite the treatment plan to have more definitive answers, though.

      At this stage, they will probably run your husband through the gamut of other tests (x-ray, CT, PFT, etc etc…) Without a PF diagnosis I wouldn’t ask about antifibrotic medications, but you could ask about other treatments for symptoms and slowing the progression… Some of these might include anti-inflammatories, steroids, immunosuppressants, and things like pulmonary rehab. You could also ask about supplemental oxygen.

      Other things to think about are if there are environmental factors in the disease.. ask his doctor about allergens. Down, carpet, woodstove smoke, mold, etc. in the home can cause lung disease. Think about his work environment–has he been breathing particulates for years without knowing it? All stuff to consider, some of which you may be able to accommodate if they turn out to be a factor.

      Hope that’s helpful. Wishing you both a swift diagnostic process and successful treatments. 🙂

      Christie

      • #29255
        Lana
        Participant

        Thanks for all the information.  We’re still waiting to get an appointment.  Our doctor had to resend paperwork on Friday, so hopefully we will hear from the pulmonologist’s office on Monday.  My husband is starting to get anxious and I know that doesn’t help matters.

         

    • #29265
      Donald Salzberg MD
      Participant

      Hi Lana:

      Thank you sharing your husband’s concerns. Very difficult to navigate through. I am a recently retired MD (Ophthalmologist) so when I presented with an array of symptoms (mostly not breathing related), I truly thought I was a head case. I had a sudden (what I thought) was an asthmatic attack and the pulmonologist told me he sees early fibrosis on my CXR (basic chest XRay)!

      I had the classic symptoms of a fibrotic disease called HP (hypersensitivity Pneumonitis). The fibrosis was confirmed with a HRCT (High resolution CAT scan) but the treated for HP is very different than for IPF (idiopathic pulmonary fibrosis)!

      I had a bronchoscope done but it can’t get lung tissue far out at the lung base so often IPF is difficult to diagnose without the VATS lung biopsy. Yes it is with risk but without that biopsy I’d have wasted 6-12 months taking Prednisone and inhalers which are fairly useless with IPF. Harmful side effects with steroids. So I pushed my Pulmonologist to do the open lung biopsy and bingo—it was IPF and not HP. Even though my symptoms were textbook for HP (fatigue; palpitations; brain fog; easily winded) I wanted a definitive diagnosis.

      It seems many people who could benefit from antifibrotic meds take years to finally get them as they reduce AE (Acute exacerbations) and slow down the fibrosis.  There are lots of exciting trials going on

      I’ve been in OFEV since 9/2018 after my biopsy  I’m now 66 and stable.  PFTs (pulmonary function tests) Will help differentiate restrictive lung disease from obstructive lung disease.  But without the biopsy—it’s an assumption what one officially has. When Covid hit in March 2020 I decided to retire and sell my practice. It’s a potential death sentence (pre-vaccinations)!!

      All the environmental stuff would point to HP and steroids etc and avoidance of those allergens will be beneficial  i had environmental people come to my home and office—all clean (especially my wallet)!!  Other treatments have not shown scientifically to slow down IPF.  I’ve looked into pharmaceuticals (Wei) but not convinced it’s worth the $$$$ but many think otherwise,

      Bottom line is as a patient and as a physician, the VATS biopsy will give the definitive diagnosis (need a good pathologist) and will help determine if anti-fibrotic therapy is indicated.  The sooner they are started the better.

      With a healthy ticker (heart) the biopsy wasn’t bad.  I am glad I advocated it for myself.  Waiting a year to repeat the CT only confirms if the fibrosis is getting worse.  The high resolution CT tells the doc whether you have fibrosis.  If you do—then he needs to know what type of fibrosis he has.  Makes sense???  I hope this is helpful.  Feel free to ask more questions as I’m constantly learning so much from everyone.

      Don Salzberg MD (aka Doctor Don)

       

      • #29294
        Lana
        Participant

        Thank you for your response.  We will be seeing the pulmonologist Friday morning.  I am hoping for some answers, but also know it will probably  take more testing to get a difinitive answer.  My husband’s heart is not good, so that is also a concern. Taking one day at a time.

    • #29295
      Donald Salzberg MD
      Participant

      Lana:

      Taking one day at a time is the best way to approach this. The PFTs, chest XRay and CT scan should help differentiate the diagnosis of fibrotic lung disease (a restrictive lung disease) vs COPD or another condition (an obstructive disease)!  Then one needs an answer of what type of fibrotic disease it might be (Idiopathic; hypersensitivity; issues with molds/etc; sarcoidosis etc)!!  Good luck. I felt initially to be a victim of having this but have learn to accept this and truly feel each day is a blessing (unless my OFEV is doing it’s GI thing!!). Hang in there. Knowledge is power. OFEV/Esbriet are approved for pulmonary fibrosis so hopefully you/husband can start this if indicated.
      Don Salzberg

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