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    • #28285

      Photo credit found HERE

      COVID-19 vaccinations and their effectiveness in protecting us against the virus has topped news stories around the globe for several months now. Understandably, and as our only way out of this pandemic, many people are wondering about the vaccines and if they will be effective in those with rare diseases such as ours. Others are wondering about the effectiveness of the COVID vaccines for patients who have received a lung transplant due to pulmonary fibrosis.

      Some of you may have heard that in an initial study examining the two mRNA vaccines, the effectiveness of Pfizer or Moderna for transplant patients who are immunocompromised was not very promising. However, additional studies looking at this again following the second dose were more encouraging.

      I really enjoyed reading an article on our PF News homepage about this, which features our very own @davidota and his transplant story. Check out the article here: Despite COVID Vaccinations, Caution Still Crucial for Transplant Recipients.

      If you have received a lung transplant, has your doctor cautioned you about the effectiveness of the vaccine?

       

      If you received Pfizer or Moderna, has your experience been positive as a lung recipient? 

    • #28296
      Christie
      Participant

      I love this piece so much. Going to be sending it to every vaccine-hesitant family member who intends on coming to my vow renewal in the fall… This will be a much easier conversation starter than “*cue sobs* why don’t you care about my mommmyyyyyyy” which is selfishly how I feel, even though I KNOW some people do have good reasons for their hesitancy. I had high hopes for an immune response in transplant patients, and seeing this preliminary data is pretty crushing.

      To answer your questions, UCSF docs reiterated this info in my mom’s last clinic visit and advised her to still act with the utmost caution. It is heartbreaking.
      And both of my parents received the Moderna vaccine. I got Pfizer. None of us had side effects other than mild fatigue and arm pain. No complaints here.. go get vaccinated if you can! 🙂

      Lastly, three cheers to David for taking the time to help Hawken with this piece. 🙂

    • #28313
      Jack Blum
      Participant

      I had a double lung transplant June 2020. St. Jo’s Phoenix AZ Transplant team recommended getting shot. Got Moderna vaccine April and May thru VA. SORE ARM BOTH TIMES, NO OTHER COMPLICATIONS. I do feel more protected now, but still wear mask in public.

    • #28338

      Thanks so much for sharing @jackblum and @christie-patient! I really appreciate your expertise here and sharing your thoughts based on conversation with your medical teams, or your loved one’s medical team. Really glad you didn’t have any other complications Jack, that is excellent news. I will also continue wearing a mask in public for a long time I think, despite being vaccinated.

      Char.

    • #28358
      Mike Mses
      Participant

      Christie, Charlene

      I had a single lung transplant on March 16th 2021.  I had asked my Team in January if I should get the COVID shots and they said yes.  Accordingly, I got my shots at the VA Lexington on January 16th and February 6th.  Lately I have heard that the shots may not have been effective because I was on Ofev during this time.  My team just recently did bloodwork that included the COVID antibody test.  I do have the antibodies, so the shots were effective for me.  I do feel so much better and safer, but like you, I will still be wearing my mask when out.  My Team wants me to only wear the N95 masks for at least the first year at a minimum.  By the way, I was prepared for worse-case scenarios on my transplant after doing a massive amount of research over the past two years, but still staying very optimistic that I would do good.  (I will be 72 next month.)  I am happily doing very well, out of the hospital after only 18 days and no complications other than a pesky infection that I am treating at home.  This site has been sooooo very helpful in preparing me for this massive change in my life and what to expect during my transition.  Thank you to all those who participate.

      • #28686

        Hi @mikemoses

        Thank you so much for writing and for sharing your experiences with us! Congratulations on your transplant; that is excellent news and I’m thrilled to hear you’re doing so well 🙂
        I also appreciate hearing the feedback from your doctor on the mask recommendation, antibody test and the vaccines. It’s always helpful to hear physician perspectives from others. Stay well and thanks so much for writing… I’m happy for you!
        Char.

    • #28370
      Christie
      Participant

      @mikemoses Thanks for sharing Mike, that is great news all around! I’m glad you got the shots in before the transplant and managed to mount an immune response to it. I certainly would be relieved to hear that so soon after a lung transplant. I was scared of all the germy bugs around for months after my mom’s transplant, and that was before the pandemic! Congrats on your successful lung transplant and smooth recovery. Please do stick around and keep us posted on how you are doing. Your experience is valuable!
      PS you and my mom almost have the same TX day. She had hers on 3/15/19 🙂

    • #28745
      Mary Eileen
      Participant

      <p style=”text-align: left;”>I am not having a transplant because my husband is disabled to there would be no one to care for me after the surgery.  Both the Cleveland Clinic and Pittsburg Transplant Hospital require family to be present for 4 weeks after surgery.  Anyway, could you please send me the article on how one participant thought that she had a negative reaction to the Moderna vaccine.  Prior to the second vaccine, I was able to breathe and only wore oxygen at night.  Since my second dose, I am totally dependent on my oxygen concentrator. I am concerned about getting a booster shot in the fall.</p>
       

       

    • #28746
      Christie
      Participant

      Hi Mary @blessed, Sorry to hear about your circumstances around transplant. I thought I’d mention you might be able to hire a home health nurse, or temporary caregiver to assist after transplant. At UCSF at least, that was an option for folks who couldn’t depend on family for whatever reason to care for them. Whatever path you choose is valid, and I’m Not trying to stir things up, but it might be worth looking into if transplant is something you’d like to consider.

      As for your vaccine, I don’t recall seeing an article about this, but I think @wendy-dirks mentioned that she had a bit of trouble with her second dose. If I am remembering that wrong, you might use the search function on the forums home page to search “second dose”, or peruse the “Coronavirus (COVID-19) and Pulmonary Fibrosis” subforum.

    • #28747
      Wendy Dirks
      Participant

      Hi, Mary @blessed and Christie @christie-patient

      I did have some issues after the second dose of the Pfizer vaccine. My oxygen saturation dropped and I had a routine appointment 5 days later. The nurse was very concerned about my breathing and I had lung function tests that indicated a decline. However, I felt better after a few weeks and a change to 24/7 oxygen with an oxygen concentrator and my CT scan showed that my lungs were completely stable. I discussed the possibility that the second dose had been responsible for the lung function decline and he thought this was quite possible. Another person here on the forums (sorry, I can’t remember who) also said she felt worse after the 2nd dose but improved after three weeks. I certainly understand your concerns about the booster. The other issue is that nobody actually knows if those of us taking immunosuppressants are actually protected by the vaccines at all. I’m taking mycophenalate mofetil (Cellcept) and one study in transplant patients showed 91% of patients had no antibodies after the first dose. I am continuing to be extremely careful, stay masked, and practicing social distancing as a result.

      • #28748
        Wendy Dirks
        Participant

        I should be clear that the study (referenced above in the original post) was in transplant patients taking mycophenalate so if you aren’t taking it, you may be protected as Mike is – congratulations, Mike @mikemoses

    • #28782
      Christie
      Participant

      Thanks for sharing your experience Wendy.

      As you mentioned, unfortunately, there are data showing that immunocompromised folks are not responding to the vaccine and creating antibodies. This article reviews data from Johns Hopkins in transplant patients specifically, but they also made a point to say that those using anti-metabolites for immune suppression (regardless of transplant statues) did worse in terms of making antibodies.

      Docs at UCSF recently echoed all of this information in their monthly patient education webinar that my mom attended. They are toying with the idea of continuing to use boosters in immune-suppressed folks in hopes that eventually the body will get the idea and build up some defenses..

      Anyway, it’s worth mentioning all of your symptoms and potential adverse reactions (AE, low sats, etc) to your doctor so they can keep tabs on how the vaccines affect those with IPF and similar diseases.

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