Viewing 4 reply threads
  • Author
    Posts
    • #26819

      I know many of us are (understandably) anxious and fearful about catching COVID-19. More specifically, I’ve heard people share their worries about catching the virus with already compromised lungs and/or immune systems.

      I wanted to take a few minutes to share a few columns about patient experiences with COVID-19. Both @mark-koziol and I have had the virus now, and a couple fellow columnists and colleagues at BioNews have as well, one with Cystic Fibrosis (who is post transplant) and one with pulmonary hypertension. I don’t intend to share their experiences to down play the virus by any means so please continue doing everything you can to keep yourselves safe. However, knowledge is power and it also feels more important than ever to ensure our communities feel a sense of hope that they can get through the virus, even if despite their best efforts, they catch it.

      Have a read through some of these columns, written by lung-compromised patients who have had COVID-19:

       

      Covid-19 and Me by Mark Koziol

      I Am a Lung Transplant Recipient, and I Had Covid-19 by Brad Dell

      I Have Covid-19. Here’s What Happened by Charlene Marshall

       

      Does reading about others’ experience with the virus help or cause more anxiety for you?

      If the latter, what is one tip you’ve been using to combat anxiety throughout the pandemic?

    • #26841
      Jerry
      Participant

      I’ve had IPF for 4.5 years. I got Covid in Oct. 2020. I went from living with PF to dying with PF in a matter of weeks. Those of you who are in the end stages know what I’m talking about.
      My best advise is do everything you can to avoid the Covid virus. One study in Europe shows 49 % of all IPF patients have died after getting Covid. The rest just suffer more. Thank you China.

      • #26855
        Mark Koziol
        Participant

        Hi Jerry, I am sorry to hear you had complications from the COVID-19 virus. Best wishes, Mark.

      • #27438
        Kathleen Ryan
        Participant

        I had covid and was intubated for 17 days, hospitalized for nearly two months,  I recovered , but with worsened ipf and copd.

        • #27441
          Mark Koziol
          Participant

          Hello Kathleen, you have been through quite an experience. I’m happy you survived the ordeal. I can’t imagine what you had to endure. You are a strong woman to have beat this disease. May you never have to go through anything like this again. Have a great breathing day Kathleen, Mark.

    • #26843
      Ben Robinson
      Participant

      I think the autoimmune suppressant lung transplant medication may have prevented the virus from turning into Covid disease and an autoimmune over reaction which does the most damage on you as it did me who has been on CellCept for a couple years. I had the same symptoms from the virus and no lung action. Lucky me. That’s is what I figger anyway.  Autoimmune pills working in reverse LoL.  I got a bonus too  I lost 10 pounds from the night sweats soaked   Believe me I am still quite quarantined but this virus is hard to avoid totally. I am glad the other person survived her ordeal. I believe that corticosteroids dexamethasone is the best treatment if you get the Vid.

      • #26853
        Mark Koziol
        Participant

        Hello Ben, I discussed the azithromycin I take with my transplant physician, staving off severe symptoms. She agreed that it might be true this is what happened but then how do we account for all the other lung transplant patients who were not as lucky as me. Some patients were admitted to the hospital, admitted to the ICU, placed on a ventilator, and those eventually passed. I am gonna chalk up my adventure with COVID to luck. Take care, Mark.

    • #29934
      Randy Busch
      Participant

      Hi Ben, I am new to this forum, I was diagnosed with PF about 2.5 yrs ago and I am also on CellCept. I got COVID on December 12 and was given the Moneclonal Antibody Infusion the next day. Had severe sypmtoms for about 2 weeks, body ache, chills, headaches, fever and lost smell which it is finally coming back slowly the last month. I am now fully vaccinenated including the booster. Take care Randy

    • #30441
      Toni Evans
      Participant

      Im new to the Forum having been diagnosed with IPF. Just shy of a month. Im constantly falling asleep usually for brief periods whike sitting up. If i give in to it abd kie diwn..i usualky sleep 2 hours but when i awaken i
      Mt BP n heart rate vert high. I suffer A Fib n other illnesses as COPD And Asthma. Is anyone else suffering the sudden bouts if falking asleep. These came in the last few weeks as well. Related
      To Ipf i dont know. Toni

Viewing 4 reply threads
  • You must be logged in to reply to this topic.

©2021 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account