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    • #23821
      Colleen Steele
      Keymaster

      My son was diagnosed with Long QT Syndrome two before his PH. The only reason we caught it was because I have Long QT, it’s hereditary and when my son started experiencing chest discomfort it made sense to check for that first. As it turned out, not only did he have Long QT but it was much more severe than mine.

      Long QT Syndrome is also a rare disorder where your heart takes longer than usual to recover after each beat. It’s and electrical problem and it can be life threatening. When he was diagnosed we were told by doctors to pull him out of sports, which was really hard on him. We thought things couldn’t get worse but then fast forward 2 years when he was diagnosed with PH. The Long QT did challenge treatment. It always had to be considered before starting or stopping anything.

      Do you have Long QT and if so, what has your experience been? How has it managed with your PH?

    • #23850
      Stephanie Mitchell
      Participant

      Colleen do you happen to remember what his QTC is? Mine is right around 500ms. I have to be super careful with my anti-arrhythmic drugs as they can prolong the QT interval and worse case can cause Torsades de Pointes (TdP).

    • #23884
      Colleen Steele
      Keymaster

      @stephanie he no longer has it since his transplant and I can’t remember what his QTC was. I’ll try and dig up old paperwork and see if I can find it. When he was waiting for transplant his doctor was considering giving him a pacemaker but their were concerns with the long QT. They decided to take the risk and the day he was going to have it placed he received the call. When his PH worsened his Long QT did as well. His doctor was suspicious that sometimes his chest pains were actually more from that than his heart failure or PH.

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