• Patient Experiences with COVID-19

    Posted by Charlene Marshall on January 8, 2021 at 9:26 am

    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?

    DJ replied 1 year, 6 months ago 14 Members · 15 Replies
  • 15 Replies
  • Jerry

    Member
    January 12, 2021 at 3:05 pm

    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.

    • Mark Koziol

      Member
      January 13, 2021 at 6:57 am

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

    • Kathleen Ryan

      Member
      February 22, 2021 at 11:42 am

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

      • Mark Koziol

        Member
        February 22, 2021 at 1:40 pm

        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.

    • DJ

      Member
      November 2, 2022 at 3:47 pm

      It doesn’t help that some ER’s will not treat COVID pneumonia…  That’s what happened to us.  If it had been a regular pneumonia, they would have treated.  If the covid test was negative ( 1 month post covid), they would have treated.  Where is the logic?

  • Ben Robinson

    Member
    January 12, 2021 at 3:43 pm

    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.

    • Mark Koziol

      Member
      January 13, 2021 at 6:49 am

      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.

  • Randy Busch

    Member
    September 13, 2021 at 12:03 pm

    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

  • Toni Evans

    Member
    November 12, 2021 at 9:00 am

    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

    • John Oman

      Member
      January 11, 2022 at 2:41 pm

      Toni. I also have IPF, diagnosed 3 years ago. I’m no medical expert, but…

      On waking up from your several hour nap, in addition to high BP and HR, are you also breathing rapidly (breathless)? Even if not, I suggest you immediately check your SpO2 level with a pulse oximeter.

      Have you been prescribed supplemental oxygen?

      Do you have sleep apnea? Have you had a sleep study done?

      Hope you find a solution.

      JohnO

       

    • PFCareGiver

      Member
      September 6, 2022 at 3:40 pm

      Toni my mom has IPF and takes lots of naps. It concerns her but I read that it may be to make up for not sleeping well during the night. She is 84 and on #3 oxygen.

  • Joseph Lopez

    Member
    January 7, 2022 at 8:55 pm

    I am 78 and diagnosed with IPF 3 & 1/2 years ago. I had both shots early in 2021. I contracted COVID the end of July 2021 (probably Delta variant), and it did a number on me over the next couple of months. Four days in the hospital. No energy, no stamina, hard to maintain oxygen levels. After 4 months My oxygen level is better, no supplemental O2 while at rest. Still no stamina. I contracted Omicron COVID December 20th. Two days of light symptoms and it’s over. I actually feel better after it. Still hope to regain some energy.

  • Les Viegas

    Member
    January 11, 2022 at 8:43 pm

    I want to share my personal experience with the group in the hopes that some of you may benefit from knowing about new treatment alternatives that are emerging and that you need to be aware of. First of all, I am an 8yr lung transplant recipient (Cleveland Clinic) who is fortunate to not have had COVID during the entire time it has been around. Two new treatments that have been announced are the monoclonal antibodies offered by Merck and Pfizer; however they do have serious interactions with some of drugs taken by lung transplant patients so you need to be careful and consult with your doctors. The third most promising treatment available is EvoSheld ( AstraZeneca) which is available in very limited supply and is being offered to immunocompromised patients who have had the 3 vaccine shots and have not had Covid previously. You also need to have an antibody test to prove that you have no antibodies. This drug which is given as 2 shots protects transplant patients for a period of 6 months from getting Covid and can be repeated every six months.

    So, if you believe you qualify, you should consult with your doctor on how you can get on this program. I have done so and am listed at the University of Michigan Health System as well as Cleveland Clinic and I would encourage you to do so.

    Any questions, please do not hesitate to contact me for further detail.

    Les

    • Christie Patient

      Moderator
      January 17, 2022 at 8:52 pm

      Thank you for sharing, Les @les-viegas! My mom just started the process to get her antibody test to get on the list for Evusheld. Her transplant team at UCSF is hoping to get all qualified individuals listed, but since Evusheld is in such short supply, they are doing a lottery at this time to see who gets it. I hope it becomes more readily available in the near future! It’s a relief just to know that it exists since we have done every possible thing to keep her safe from COVID-19.

      Click here to read more about Evusheld from the FDA

  • Cecil Zlotnick

    Member
    September 21, 2022 at 2:19 am

    Hi

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