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    • #31942
      Marj
      Participant

      My husband has been diagnosed with ipf over 5 years now and is doing quite well, he gets more breathless now but up until recently has been able to carry on doing the jobs around the house that he can manage like vacuuming while I’m at work.  He could still do the gardens up until last week when it was too much and he felt really ill.  Up until now his O2 had stayed at around 98-99.  We went to the doctor and his O2 had dropped to 91 and his breathing was a little erratic, and he was a bit confused – unable to finish sentences etc,  he sent him to the hospital where it was found that he had Covid.  They kept him in and started him on anti-biotics but doesn’t need oxygen.  After three days he is recovering well.  When I started to “google” I found that 35% of patients with ipf die from the Covid.  Does anyone know if the recovery is good following Covid ?

       

       

       

    • #31945
      Jeff Taylor-Jackson
      Participant

      Hi Marj,

      Jeff in Sunny Dorset England here.

      You dont say how old your husband is, not that should be important, but I am a few days off 62 and was diagnosed with IPF in April 2021.

      I mangaged to avoid Covid for two years, avoiding crowded places, wearing masks (and still do) I have had three jabs.

      A month ago my Daughter, who is a Paramedic popped in to say hello. As Paramedics here are tested pretty much every other day, and my Daughter has had covid already (three times now) I didnt think twice about giving her a hug. It’s what fathers and daughters do right?

      Unbeknown to us all she had Covid again and gave it to me, and I then gave it to my wife, who has Asthma, COPD and one lung since birth.

      We didnt go to hospital, but I certinly felt lousy for three weeks. I certainly do not want to get it again.

      I do feel as if my breathing has got slightly worse and I do seem to be coughing up more than before.

      So as for you question of recovery, my answer would be ” I bloody well hope so” I am so annoyed with myself for getting it after two years of being really careful.

      I guess the vaccinations helped keep me out of hospital and anything worse. That said it does not stop you getting it again, so as an IPF sufferer, I would say keep vigilant and stay as safe as you can possibly be. Covid has not gone away.

      I do hope your husband is feeling better.

      Kind regards

      Jeff.

       

    • #31946
      Marj
      Participant

      Thanks Jeff, my husband is 72 and, like you he isolated and we all took great care not to bring it home.  However, he is having a problem with his prostrate and has a catheter fitted which needs changing every so often by the nurses.  He thinks he picked up the Covid from the clinic as the nurse he saw last week told him she was just getting over Covid.  He felt pretty rotten for the first week but, since being in hospital on the anti-biotics is picking up.  I have read up “googled” on the effects of covid in ipf patients and it says that 35% die within the 30-day or 60-day period which I found quite worrying.  I really shouldn’t keep googling, but sometimes it’s the only way you get your information isn’t it.  As the ward he is on doesn’t allow visitors its hard to try and get to speak to someone about the severity of his infection.

      Marj

       

    • #31957
      John Fraze
      Participant

      I am 84 years old. I have had two shots plus a booster. And a flu shot every year for probably 30 or 40 years. I was diagnosed wit IPF in November 2018. I have been taking Ofev since January 1, 2019.

      I contracted Covid-19 either late January or early February of 2022. Symptoms were mild as were my wife’s. We both tested positive with a home kit twice, then negative twice. Felt like we were over it except I developed a constant dry cough, 100 coughs a day is not an exaggeration. My pulmonary doctor Rx prednisone for 2 weeks. After about 5 days or so the cough went away but I seemed much weaker than before. In the middle of April, 2022 I developed a daily nose bleed in one nostril. Went to my pcp who referred me to a ENT doctor. He cauterize my nostril sent me home with instructions  the next night I had another severe nose bleed that I couldn’t get stopped so my wife called 911. They sent an ambulance, 4 EMTs and a fire truck (???). I was transported to the ER where they got the bleeding stopped, packed my nose and sent me home. Within a few days I saw the ENT doctor again and he took the packing out and did some more cantering in my nose. It wasn’t bleeding so he sent me home with instructions. My pulmonary doctor had taken me off eliquis and Ofev until the bleeding was resolved. It has now been over two weeks since any bleeding has occurred so I’m thinking they will be putting me back on eliquis and Ofev soon. I have no idea if Covid-19 had anything to do with the nose bleeding or not. I am starting to feel much stronger and hopefully will regain my strength. I am due for my annual pulmonary checkup so I’m sure I will learn more when that takes place, probably in June.  I hope this information is helpful.

    • #31965
      Marj
      Participant

      Hi John,

      sorry you appear to have gone through the wars with the nose bleeds.  Hope it is all sorted now for you.

      Hopefully hubby will be hope this afternoon – when doctor saw him this morning his heart rate was slow so he has to have that checked out before he can come but he’s optimistic.

      Hope your annual checkup gives good results for you John.

       

       

    • #31983
      Christie Patient
      Moderator

      Hi Marj, I don’t know if there’s much data out there on the outcomes/long term recovery. I don’t think enough time has passed, and/or if doctors are broadly tracking post-covid progress in PF patients in particular. Probably some specialty centers are tracking that data… it might be worth asking your pulmonologist that question. But as you’d bet, we have a wealth of personal testimony here in the forums and I imagine more folks will chime in. You might also peruse the Coronavirus (COVID-19) and Pulmonary Fibrosis subforum to see what people are saying there.

    • #32007
      Adelaide Campbell
      Participant

      I’m 78, diagnosed with ILD PF, and have just got over Covid.  What a nasty ugly little virus that is!  So five days mostly spent in bed, and five days getting over the fatigue that lingers.  I’m on 2l for exertion but I haven’t needed oxygen much for a while now. And I didn’t use much while I was sick.  I’m back out in the garden, enjoying the summer weather.

      I also read the stats, and was furious that my husband brought Covid home with him.  He’s aware he could have killed me.  But I’m ok now, just coughing a bit more than usual, and not always a dry cough like it used to be.

    • #32015
      Kathleen Kaufman
      Participant

      My husband, who has IPF, & I both got Covid in December 2020, before vaccinations were available. We were very sick, & got monoclonal antibodies, which is why I think he didn’t end up in the hospital. Unfortunately, my husband also got a rare pneumonia called Organizing Pneumonia. His lung disease doctor said this was considered an exacerbation. He took 40 mg Prednisone for about 6 weeks, & did get better. His last pulmonary function test showed he’s stable, & that’s the best we can hope for we’re told. He gets another CT scan in Sept. But my point here is that one can survive Covid with IPF.

    • #32017
      Donald Salzberg MD
      Participant

      I was diagnosed with IPF by VATS lung biopsy in September 2018. After 34 years of never being  sick, I knew something was wrong.  I had a very busy solo Ophthalmology practice, and once  I had a definitive diagnosis, I agonized if I should continue practicing, considering having almost daily oppressive fatigue. When Covid restrictions came on the scene that Wednesday night, I had to see post-op a bunch of cataract surgery patients that next day. I also had an emergency patient that morning, who denied Covid symptoms to my staff, but was coughing profusely. It was at that moment I realized I had examined my last patient (after 36 years) and sold my practice 3-4 months later. I inherently knew (with no vaccines on the horizon) that Covid + IPF was likely a death sentence (in March 2020). Just wanted to share my story. I have now had 4 vaccinations, and have never tested positive. I have not read about the 35% risk of death in IPF/Covid patients, but I suspect those numbers were much worse early in the pandemic in patients with IPF. I loved my profession, but it was truly liberating (and life saving) to let my practice go. Stress played a huge burden in my health and I now physically feel much better on a day to day basis without the stress. Thank you all for your insights.
      Don Salzberg MD

    • #33117
      Bruce Hawn
      Participant

      I am 62 and have had IPF for a while now.  I caught Covid not that long ago and believe I caught one of the milder forms, such as Omnicron.  My biggest symptoms were fatigue, dizziness and head congestion.  Immediately started on Paxlovid and by the end felt a lot better.  Still got dizzy and was still tired a lot.  Fast forward about 6 weeks and I believe that I am back to where I was pre-covid, without significant adverse effects.

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