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    • #27595
      Sallad
      Participant

      Hospitalized with Covid in January and now recently diagnoses with pulmonary fibrosis.  What should I know and what should I be asking my drs.  Drs admit they don’t know enough about Covid and what will happen.

    • #27608

      Hi @sallad

      Thanks so much for sharing your story, though I’m so sorry to hear of the diagnosis of pulmonary fibrosis. Just confirming this diagnosis was made by a pulmonologist (lung specialist)? Have you had a high-resolution CT scan to confirm the diagnosis? Not that I’m doubting the doctor at all – as I am not a medical expert or physician – I just can share the importance experience of having an HRCT done to confirm the diagnosis of PF. Sometimes that is also done by a lung biopsy.

      I don’t know if doctors are using either of the two anti-fibrotic medications (Esbriet and Ofev) to treat COVID-induced pulmonary fibrosis, but this might be a question to ask as the goal from these drugs is to slow the fibrotic progression. Another question I’d ask early in the diagnosis is for a referral to a pulmonary center of excellence, if one is geographically situated to you. You can find those listed on the Pulmonary Fibrosis Foundation’s website.

      Does this help at all? Again, I’m not a medical expert and these suggestions should not replace your doctor’s advice, but just a couple things to consider from one patient to another.
      Char.

    • #27616
      Sallad
      Participant

      Thanks for the quick and thoughtful response.  Yes I am being seen by a pulmonologist (seen three times since discharged from hospital).  Had CT scan in hospital and scheduled for one next week.  In addition I have had 4 chest X-rays.  While the X-rays are showing improvement, the most recent one is abnormal.  Follow up tests are scheduled after the CT SCAN next week.

       

      I am also on asthma meds… Advair and albuterol.  Feeling very optimistic and your response is very helpful.

      I have started a second round of prednisone.  It is hoped some inflammation will subside before cat scan.

      • #27667

        Hi @sallad,

        Thank you for your reply and answering my questions. I’m so glad you’re being seen by a pulmonologist – pulmonary fibrosis is arguably one of the most tricky diseases out there, and even a lot of doctors admit they don’t know a lot about it. I felt such relief when I was finally put in touch with a Pulmonologist! Have you had the CT scan yet? I’ll be thinking of you and hoping for good news despite one showing some abnormalities.

        I know albuterol is for asthma and some people say this drug doesn’t help those with PF, but honestly, I find it helpful and that it provides relief. I hope you do too!

        Hang in there and feel free to connect with us anytime.
        Charlene.

    • #27632
      Kathleen Ryan
      Participant

      I had covid in March of 2020. Now I have pf. Mine was confirmed by a HRCT while I was hospitalized for pneumonia in November of 2020. My pulmonologist said it was a result of covid – I had already been diagnosed with bronchiectasis and Copd, and now this.

      • #27666

        Hi @kathleen

        Thanks for writing to us, though I’m so sorry you’re dealing with pulmonary fibrosis as a result of COVID. How awful! I don’t know if they are treating covid-induced PF with either of the two anti-fibrotic drugs to slow down the progression, but it may be worth asking your Pulmonologist about? They were originally approved for use in IPF (idiopathic) cases only, though they’re being used more and more so I didn’t know if this was an option for you. Are you really feeling the respiratory effects still post-COVID? So unfair. Please know that we’re here for you in any way that we can be supportive.

        Charlene.

        • #27670
          Kathleen Ryan
          Participant

          Hi, Charlene.  Thanks for your good ideas about medications.  I see my pulmonologist next month and also will have an x-ray at that time.   I’ll be sure to ask him about anti-fibrotic drugs.   Last I saw him he said he just wants to keep me as comfortable as possible.

        • #27672

          Goodluck Kathleen, and happy to help where (if?) I can!
          If you think of it, please let us know what your doctor says about the use of either Ofev or Esbriet for covid-induced PF. Not sure he/she will go for it, but I am curious about professional opinions on this.

          Char.

    • #27634
      Brigid Thompson
      Participant

      Am very interested to read pulmonary fibrosis as a result of Covid infection.  This is exactly where I feel my husbands pf status stems from.  He doesn’t feel that’s the case.  As his problems seem to be getting speedily worse the gp has asked for another thorax exray and full blood tests this week.   Hope to get some response next week.   This is all because, whilst previous tests have revealed mild progression of the disease, we feel things are worse, ie coughing and spluttering a lot and immense fatigue.  The one positive is he sleeps well.  He can no longer walk any distance without stopping.  Currently he’s just on pain relief only for aching to chest area from coughing.

      Anyway, as his carer, I just thought I’d reach out and tell you what it’s like this side of the pond.  Thanks for your time.  Keep well and safe.

       

      Brigid

      • #27665

        Thank you for sharing with us Brigid, and I’m sorry to hear your husband is getting worse. This relationship between COVID and pulmonary fibrosis is newly emerging, and one I am eager to learn more about as well. I hope the tests scheduled for this week provide some helpful answers for you both .. I’ll be thinking of you!
        Charlene.

    • #27642
      Bob P
      Participant

      Sallad, Kathleen and Brigid

      I met two weeks ago with a pulmonologist at mass general hospital who specializes in environmental and occupational related issues. We were trying to identify a potential cause of my IPF. The type and location of scarring in my lungs is different than typical IPF and more commonly found in people with these type of exposures. Based on a surgical biopsy I had completed in December, my scarring is in the airways and not the alveoli.

      We couldn’t find an environmental or occupational linkage and theorized that my scarring could be related to a viral pulmonary infection I had a couple of years ago that took a couple of months to resolve. The pulmonologist mentioned that they are starting to see this type of scarring with Covid patients. When it takes a long time for lung inflammation to resolve itself it can turn to scarring, which may be what happened in my case and maybe happening with others.

      I’ve had three lung function tests completed over the last several years and numerous scans. My IPF appears to progressing but at a relatively slow rate. Hopefully that is the case for you as well.

       

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