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    • #29799
      Brett C Scogin
      Participant

      I was diagnosed with IPAH in 2003. Had a PTE surgery in 2005 in Ca.

      I talked to surgeon that assisted Dr. Jamieson. And now in charge of the PTE surgeries nurse and she stated doctor reviewed my case thru my stay there and should get vaccine.

      My doctor also agreed even though I have bad reactions to different generics.

      I had the J & J shot Monday April 12th at 9:20 am was feeling fine. Ran several errands to get meds and last errand around 11 I got confused and headed home went to bed.
      That night my throat swelled up, never happened before was hard to breath and had headache and sweats and very tired.
      I been down not out of house since then. Every day amd night sleeping and sweats.
      Up today and put pulse ox on, I use 7 liters of oxygen and sitting it will not hit 99 % consistently at rest like it did in past.
      I would not recommend the J & J vaccine it you have my condition.

    • #29803
      Jen Cueva
      Keymaster

      Hi @pte1941, I am so sorry to hear about the adverse reactions to the J7J vaccine. I would have thought that for anyone with a history of PTE, the doctors would be cautious. I wish I could help you feel better, but I hope that time will help you feel better.

      What is your PTE team saying now?

      Again, I am so sorry that this occurred to you. I am thankful that you shared your experience to maybe offer others, especially with PTE history, to be more cautious.

      Please keep us posted as you return to your “norm”. Sadly, the unknowns are just the worst.

    • #29808
      V.R. Peterson
      Participant

      @pte1941, I would call my doctor and ask him about vaccine-induced immune thrombotic thrombocytopenia, a very rare side effect that is more likely to affect younger women with a known clotting disorder. The J&J vaccine has been halted in the United States while they do more investigation on this side effect.

    • #29835
      Jen Cueva
      Keymaster

      Hey @mamabear007, excellent advice for @pte1941. That is scary, as I knew when I read this they are halted here. Thanks for reminding us of that.

    • #32555
      Brett C Scogin
      Participant

      Thanks for all the reply’s.  
      Doctors put me on Adempas July 4th.  I have tried all the meds except the stuff that shoots meds into lungs.  
      I was sick and bed bound all summer.  
      Side effects from Adempas were bad. Dizzy, fell, confused, rapid weight gain, nasal congestion.
      Finally against lung doctors advise went back on generic Revatio 2 20mg pills three times a day and the difference was night and day several days after the 24 hour switch.   Been able to catch up on stuff that needed done around house and outside.  
      Sometimes you really have to tell well meaning doctor even if med helps extend life in studies, I was not in that study and laying in bed sick all summer is no life.  I will not get any booster shots period.  Nurses that clean for me, got Covid prior to shot, then forced to get shot, and one is sick the other one younger mid 30’s is home with Covid again.  I wear a mask when I go get meds or gas station.  
      Not saying Adempas is bad for everyone, but with my conditions the Revatio, and REVATO generic has been the only med that worked.
      Thank you all for advice.
      God Bless

      Brett

      • #32590
        Jen Cueva
        Keymaster

        Hi @pte1941, I am happy you spoke up and adc=vovcated that you needed to try another treatment. We must do this. AS you mention, we are not in the clinical trials. Our bodies react differently to medications. Some PH treatments work better for some than others. This is why PH is often challenging to treat.

        Like you, Adempas was not the best treatment for me. I switched back on my Revatio, too. I’m also on Uptravi.

        Because you advocate for yourself, you are feeling much better. Do you see a PH specialist at a PH Center? What does your lung doctor say now? Who switched you back?

        I hope that this feeling better continues for you on the sildenafil (generic Revatio).

    • #32557
      Colleen Steele
      Keymaster

      @pte1941 I am so sorry that happened to you! As @mamabear007 mentioned, J&J has been halted in the US. I’m not sure if they will want you to or that you will even consider it after what you have been through, but should you decide on the 2nd vaccination my son’s doctor said it is ok to get dosed with a different brand. It just interferes with statistics.

      I hope going back on Revatio works well for you. My son was on that with other combination therapy and it worked well for him. I say, good job advocating for yourself!

    • #32587
      Colleen Steele
      Keymaster

      @mamabear007 I didn’t know that J&J is available again in the US. Thank you for that information and the link!

      • #32588
        V.R. Peterson
        Participant

        You’re welcome, @ColleenSteele. I don’t think the halt lasted very long. Maybe a few weeks.

        • #32589
          Jen Cueva
          Keymaster

          Thank you @mamabear007, I believe that that is correct. J & J only stopped for a few weeks. They researched previous vaccines before the halt and said it was more imperative to receive the vaccine. The benefits outweighed the risk. I would suggest that anyone interested read the CDC information that @mamabear007 shared. Specific individuals should be precautions.

          I know that you were not eligible for the vaccine Mamabear. I received mine much later than most but did receive it eventually. How are you doing?

          How’s your family? I hope that everyone is staying safe.

        • #32591
          V.R. Peterson
          Participant

          We’re all doing well, @jenc. I’m getting excited to see my son and his wife for Thanksgiving. It’ll be on Sunday, but that’s how we figured out to see them every year, and they don’t have to pick between her parents and his. It makes me happy. 😊

        • #32595
          Jen Cueva
          Keymaster

          I’m happy to hear that your family is doing well. Thanksgiving on Sunday with your son and daughter-in-law seems like a win-win for everyone. You seem like such a chill lady, going with the flow and making things work so that all are happy.

          Have you always been like that? Or, did PH change your mindset?

          Most importantly, @mamabear007 is happy. 😀

          Enjoy your family Thanksgiving this weekend.

        • #32596
          V.R. Peterson
          Participant

          It’s something that maturity taught me. I can’t always choose what happens, but I can always choose how I react to it. One way makes me tense and stressed out, so I choose the other reaction.

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