This topic contains 6 replies, has 4 voices, and was last updated by  Jen Cueva 3 weeks, 5 days ago.

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  • #12918

    There are a lot of things that people say about lung transplant but not all of them are true. Click here to read about 5 myths about lung transplants — and find out the facts.

    What are some of the most commons myths you’ve heard about lung transplantation? Did we miss any in this list?

     

  • #17358
     Kaye Norlin 
    Participant

    I read this a while back and since that time, I have seen several people die because they would not consider a lung transplant. when you are “end-stage heart failure” and/or your pressures won’t stay donw inspite of the treatments and 02, isn’t it time to think what you really want? I chose life and a transplant. Even if it only gives me a few years, those years will be untethered from lines and 02 and with the ability to walk the hills in Portland this summer and Tuscany next year. I even “un-retired” and am teaching college part time, as well as yoga, of course. I was 67 at transplant in 2018, and I hope I am never too old for another in case these wonderful lungs that I have now stop working for me.

    • #17368
       Jen Cueva 
      Participant

      Kaye, well said! You also answered my question on your Yoga classes . I’m so happy for you ! If I remember correctly from Conference, aren’t you a Cancer survivor as well ?

      I’m a tad jealous with you walking all of those hills in Portland and even more so in the Tuscany countryside! I hope you have the time of your of Life!

      Keep it up , ohh truly amazing!

  • #17361
     Colleen Steele 
    Keymaster

    Kaye, thank you for sharing that you’re living proof on debunking the transplant myths! Congratulations on doing so well! I see that you received your transplant in 2018. Have you celebrated your 1st Anniversary yet? I enjoyed reading all that you have been doing with your life since then. Good for you for becoming “un-retired”! That is so awesome!

    The decision to be listed for transplant isn’t a light one to make, that’s for sure, but it’s important to make sure the information you are collecting about it is correct. Do not allow myths like the ones mentioned in the article influence such an important decision.

    My son will be celebrating 5 years post heart/double lung transplant in August. The journey isn’t easy and he has had his share of ups and downs but he does not regret the decision. I was reminded in his Caringbridge the other day that in June of 2013 he was in severe heart failure and needed to be listed. Well, this June he will be graduating from high school. That is a big life event that he never thought he would live to see!

    • #17369
       Jen Cueva 
      Participant

      Colleen, how awesome that next month, he will be graduating! It is Conner? Congrats!
      I know it hasn’t been easy , first as a Mom to make decisions as he was younger when he had the transplant and then to watch him both pre and post transplant! I can’t even begin to imagine the emotional roller coaster one goes through trying to make the decision and then just adjusting to that new life . That all while in his teens has to be a tough one but definitely worth it!

      Thanks for sharing the myths. I think it’s a quick and interesting read for all. I haven’t known you long but I can tell you’re a strong, loving, supportive, and caring Moma!

  • #17374
     Colleen Steele 
    Keymaster

    Thank you so much Jen for your kind words! You where close, his name is Cullen. PH and transplant has definitely been one crazy roller coaster ride but he is worth it. You are all worth it! Amazing PHighters all of you!

    • #17380
       Jen Cueva 
      Participant

      Oops sorry Colleen, Cullen, I’ll try to remember that, I don’t even know anyone named Conner, ha.

      Thanks for the compliment but I know for myself , I wouldn’t have made it this far without such an awesome support team/ caregivers!

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