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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.

       

    • #29457
      Kathleen Kaufman
      Participant

      My husband was diagnosed with IPF in Sept 2020, & was started on Esbriet. In late Dec 2020 he was positive for Covid-19, & got monoclonal antibodies, which I suspect kept him out of the hospital. But as a result of the Covid, he got another very rare disease, Organizing Pneumonia. The pneumonia was so bad they couldn’t even see the IPF on a CT scan- they only saw the pneumonia. He was on a high dose of Prednisone for about 6 weeks. The last HRCT scan a few weeks ago showed the pneumonia was gone, but it did leave some additional scarring (obviously just what he doesn’t need!). While the IPF looks about the same on the CT scan, his pulmonary function tests continue to go a little down every time he has them- a bit depressing.
      Question for the group- he has an unpleasant metal/coppery taste in his mouth, and nothing tastes good to him. Foods that he used to really enjoy now taste bad to him, & there’s just nothing he eats that tastes good. Has anyone else had that happen?

      • #29458
        Christie Patient
        Moderator

        Hi Kathleen @kathleenkaufman. I am not sure if Esbriet can have that metallic taste symptom. I feel like I’ve seen that floating around the forums in the past though (someone with more experience might chime in). I am wondering if your husband was on any antibiotics to treat his pneumonia? I have had that symptom from a course of antibiotics and it was extremely unpleasant, so I feel for him. Glad the pneumonia is gone and that it didn’t exacerbate his PF too terribly. Wishing you both the best.

        Christie

    • #29459
      Jeff Taylor-Jackson
      Participant

      Hi All,

      Truly sorry to hear that you have had Covid AND now have PF.

      I have recently been diagnosed with IPF, I have not had Covid however. One thing I have found since the diagnosis is the lack of awareness about the disease and the lack of funding for research.

      I’m not saying there isn’t any, I’m just pointing out that Cancer sufferers have more awareness and a bit more research.

      Whilst both are dreadful diseases to deal with, IPF takes just as many of us as Cancer, but it seems not as much is being done. It is getting better, that’s for sure.

      I speak as someone from the UK, other parts of the world may differ.

      Now I suppose my rambling point to all of this is: Now Covid is rampaging around the world, there does appear to be a link with lung scarring so this may well raise the profile of IPF and PF. I know there is a very small study in Kings in London, that will try to use the patients own white blood cells in to possibly treat lung scarring due to Covid. Lets hope that it shows positive results and this treament can be used for all sufferers of IPF, PF or Covid.

      Truly sorry for anyone who has been stricken with Covid and now with PF.

      Stay positive everyone!

       

    • #29476

      Hi Kathleen,

      I’m so sorry to hear of your husband’s experience with Covid and subsequent, pneumonia. How unfair and I do hope he is on the mend! Regarding the metallic taste, I’ve not experienced this personally from the anti-fibrotic I’m on (Ofev) but I have heard of others experiencing this on Esbriet. There is a ‘magic mouthwash’ that is prescription, which typically is for sores in the mouth post chemotherapy but I know one person who used this to coat their mouth and remove the metallic taste so food aversions weren’t as bad. It might be worth talking to your husband’s doctor about this to see if it can be prescribed.

      Thoughts?
      Char.

    • #32719
      Rebecca smith
      Participant

      I see this thread is from 2021, but I’m desperate for input/information.
      My story started in May. I’d been very short of breath while out of town on vacation. COVID didn’t cross my mind for a week. I had a false negative. But I drove home to my hospital. 10 days into this. COVID positive. Lungs horrible per CT.
      this is now 2 1/2 months later. No change in CT. “No improvement in scarring”.
      I am absolutely miserable. At rest with 2l oxygen I’m 94% sat. But the minute I move my pulse jumps and my sats drop.  A trip to the bathroom, (with 4-5 l oxygen) my pulse is 130 and sats drop to 70’s.
      how are you all doing? What kind Of medical treatment,nebulizers, inhalers have you been on?

      Not much info here on Pulmonary Fibrosis caused by COVID. But the end result is most probably Pulmonary Fibrosis.

      I’ve been on prednisone at home. Just tapered off and now back in hospital getting IV steroid and steroid news.

      • #32720
        Christie Patient
        Moderator

        @rebecca

        Hi Rebecca, so sorry to hear you’ve got PF symptoms after COVID. Sadly, there isn’t too much to report as this is all new to the world of medical science. But thank you for sharing your story here. It’s important to be vocal about what you’re going through so we (especially including healthcare providers) can continue to learn about PF caused by COVID. And in the forums here, we can learn from each other and compare notes. I’m interested to see what others have to say about treatments. I don’t have anything to contribute there, but wanted to just say hello and thanks for bringing this thread up to the top of the chart again. It’s important.

        Hugs,
        Christie

    • #32735
      John K
      Participant

      @rebecca

      Hello,

      I also developed mild PF after a hospital bout with Covid and Pneumonia in March of this year. A cat scan from the hospital confirmed this.  My pulmonary Doctor has tested my Lung capacity three times now and for each time the results were good (according to him).  He doesn’t  want to put me on any meds at this time! My latest cat scan this month (July) showed I still have Pneumonia, ground glass opacity(whatever that means)  but no PF.  When I asked the Pulmonary Doctor about no PF on the cat scan he brought up my scan, zoomed in on an area and quickly showed me an area that appeared white and said I have PF.  Has anyone experienced this descrepancy and what should I do?  I don’t have any coughing but I do get out of breath if I start doing moderate activities and I am regularly fatigued.

      Regards John

      • #32737
        Maya
        Participant

        Hi John,

        Ground glass opacities usually represent inflammation (and a few other things) whereas true fibrosis is defined by distinct features such as honeycombing, traction bronchiectasis, reticulations. So in your case it seems you have inflammatory changes caused by Covid and they will hopefully decrease. In some patients these changes progress to fibrosis, but that’s a minority. Research shows that a lot of these changes in Covid patients are reversible.

      • #32746
        Christie Patient
        Moderator

        Hi John, Maya gave you great information but I just want to expand on it a little bit. The word “fibrosis” means scarring. So, we have the unfortunate issue of “pulmonary fibrosis” meaning both “scar tissue in the lungs” which could be the result of illness, injury, or chronic inflammation, for example… and “the rare progressive disease known as pulmonary fibrosis”, which this forum is about. Scar tissue from inflammation, COVID, or something else may not be progressive. The disease PF/IPF is. You should ask your doctor to clarify what type of scarring they see on scans, and if there are other indicators of disease–things like Maya mentioned, such as honeycombing. Hope this helps.

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