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    • #33665
      Colleen Steele
      Keymaster

      @bekah-1367 is a new forum member who has an upcoming appointment with a transplant team. During her past two visits it was decided she was too “healthy” to be listed. Due to worsening symptoms she is hoping this time they will decide to list her.

      The wait to become unhealthy enough to be listed for transplant was very frustrating and emotional for my son. He couldn’t understand why they waited until he was in serious decline.

      Is anyone else going through this? Do you feel like it’s time to be listed but the transplant team wants to wait until you are sicker?

    • #33672
      Jen Cueva
      Keymaster

      Hi @colleensteele, I can only imagine how frustrating this was for Cullen and your family. Although he doesn’t have PH, my BIL is awaiting a liver transplant. But because his numbers are improved, he is moving lower on the list. He’s beyond frustrated and says he feels like this is unfair. He can’t return to work or much of anything until he has that transplant and recovers or improves much more.


      @bekah-1367
      , I have known a few PHriends who have been told the same. They are not evaluated until their PH progresses, which no one wants but also needs this to be a candidate. I’m sorry that you, too, are struggling with this.

    • #33678
      Colleen Steele
      Keymaster

      @jenc I can understand not listing someone until they really need it but I think for PH patients they should be listed a little bit sooner. Cullen’s PH doctor was on committee’s or something trying to get the requirements for PH patients changed. The concern is that when a PH patient stops responding to treatments and heart failure worsens, the decline can be rapid.

      I should emphasize though that Brian and I wanted to keep Cullen off of the list for as long as possible. His PH doctor agreed. When he said it was time to list Cullen then we knew 100% that it was time. But the longer Cullen waited for the call and the sicker he got the more he expressed that he wished he was listed sooner. It’s really a tough decision to make.

    • #33682
      Jen Cueva
      Keymaster

      Hi @colleensteele, that certainly makes sense. Yes, when those with PH stop responding to treatments , it’s time to list. You’re right, otherwise must start a rapid decline.

      I hate that Cullen and your family had to go through this. Thank you for sharing your thoughts and experiences with this difficult topic and decision.

      Like the movie that I shared last month, I wouldn’t want to be on the committee either.

    • #33684
      Clyde
      Participant

      I started on Remodulin in November.  They sent me a letter February telling me I was removed from the list.  My breathing has improved tremendously with this medication.  I went from being able to walk about 25 steps between rests to about 1000.  My O2 requirements have lowered considerably.  This is a wonder drug for me and I was happy to not need a lung transplant at this time.

    • #33689
      Jen Cueva
      Keymaster

      Hi @clydedodge, what an excellent update that you shared with us! I’m so grateful to hear that remodulin has been your “wonder” drug. Are you on IV or SubQ? How have you adjusted to life with remodulin?

      It sounds like it has improved your quality of life in many ways. What has been the most difficult for you? I can hear your sense of relief for being taken off the transplant list after such positive results with remodulin.

    • #33693
      Colleen Steele
      Keymaster

      @clydedodge Remodulin worked wonders for my son too, that and Flolan. If it weren’t for him responding well to treatments he would have needed a transplant when he was 8 instead of at 14.

      I’m so happy that you are doing well and appreciate that you took time to update us. With this improvement in your health have you been able to do and enjoy more activities?

      • #33702
        Clyde
        Participant

        I absolutely can do more.  My high school basketball team, that includes two cousins and a nephew, went undefeated and were district champs.  It is a long walk from the parking lot to the stands.  Last year I walked in stages to make it to one game.  This year I attended every home game and walked without stopping.  Not once did anyone ask if I was alright.  It was great…..

        • #33714
          Colleen Steele
          Keymaster

          @clydedodge this update really made me smile! What you said about, “Not once did anyone ask if I was alright” is the best part! Sometimes what isn’t said can be as powerful as what is spoken. Really…good for you! So, how did the team do?

        • #33718
          Jen Cueva
          Keymaster

          Wow, @clydedodge, that’s so cool! I’m glad to hear that you’re enjoying more after your positive results from Remodulin. That must have felt like you could accomplish anything after that! I hope the team did well this season, too.

    • #33817
      Colleen Steele
      Keymaster

      As I mentioned previously, @bekah-1367 is hoping to get listed for transplant soon but previously has been told she is took healthy for that to happen. It is a frightening tightrope PH patients have to walk in order to get listed – they can’t be too sick but they also can’t be too healthy.

      In my column this week I interviewed Rebekah and share her experience and concerns regarding transplant. I hope you will take a moment to read it and offer her words of support.

      Walking the Transplant Tightrope for a Second Chance at Life

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