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    • #29235
      Colleen Steele
      Keymaster

      @exjarhead57730 and @bill-jones how are you doing post-transplant? I thought this topic might interest the both of you.

      Ever hear of phantom pain? Post-transplant my son has experienced what we refer to as phantom PH. There are times when he still worries that he needs oxygen when he really doesn’t. It’s taken him a while to get use to feeling normal breathlessness after physical activities. He still is in the habit of assessing how his lungs and heart are doing. It also took him a while to get use to no longer having a central line that he needed to protect.

      I wrote about phantom PH in my column this week.

      If you are a transplant recipient, have you experienced phantom PH symptoms? Tell us about them?

       

    • #29252
      Jen Cueva
      Keymaster

      Wow, this is profound, @colleen. It makes sense as many have phantom pain after having amputations, etc.

      I can imagine how that feeling of breathlessness would make me nervous, too. So many things that many wouldn’t know about post-transplant. Thank you and Cullen both for sharing your lives and experiences with us all. That post-transplant can probably relate. Excellent column!

      Was it a pain to use the drysuits? I had heard from others with PH kids that they were a pain but worth it, so the kids can be kids, too.

      We would love to hear from @exjarhead57730 and @bill-jones as they learn to live post-transplant.

    • #29272
      Colleen Steele
      Keymaster

      @jenc the dry suits were a pain, expensive and the zipper broke easily on them, but yes, very worth it! We got Cullen his first one so he could swim during heart camp (which is where he met Kathleen). It was the happiest I had seen him in a long time.

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