• Brittany,

    When I feel down, challenged or otherwise blue, I go for hard driving rock like the Foo Fighters
    (All My Life, Pretender, Rope) or Red Hot Chili Peppers or Old School Led Zeppelin (Over the Hills and Far Away, Going to California). My neighbors probably think I’m crazy as I sing these loud while mowing the lawn! Lol

  • Last summer I was teasing my dog with one of those chuck it sticks with a ball in it. I was making him jump up for it and he landed on my Remodulin line and pulled it out at the green connector. Landed me in the ER with flash pulmonary edema. Transferred to to the cardiac ICU for a couple of days of “fun”. Cleared itself up quickly, but I am…[Read more]

  • Brittany for @ripple76,

    I have been on Remodulin for 7 years in all of it’s forms. SubQ, Inhaled, and currently IV delivered via Hickman port. I am also taking Revatio and Opsumit. Similar to Graydon, I could not walk up a single flight of stairs without feeling like I would pass out right before starting the infused Remodulin. Since m…[Read more]

  • Hi Vanessa,

    I started Uptravi in March 2016. At the time I was taking Revatio (20 mg X 4, 3 times daily), Tyvaso (10 breaths, 4 x daily), Opsumit (10 mg daily), and my PAH was advancing. The plan was to eliminate Tyvaso by titrating down while titrating up on Uptravi. When I got to 800 mcg X 2 daily of Uptravi, I experienced headaches and…[Read more]

  • Michael posted a new activity comment 11 months, 2 weeks ago

    Katkleen,

    I see Dr Robert Frantz at the Mayo in Rochester MN. He brought it up at my recent appointment. There are two people in Rochester who took part in the clinical trial and have had them for five years. Both of them are happy with the Pump vs infusion via an a external pump and Hickman port. I am considering it now. Dr Frantz believes…[Read more]

    • My doctors have stated that the ISR is not available yet (2020) The only ones that have received them are the ones that participated in the trials for now (2019). I hope I can transition to it and get off the pump. Fingers cross…

  • Michael posted an update 11 months, 2 weeks ago

    I am considering the implantable Remodulin Pump from Mectronics. Any members currently using it? I have been using infused Remodulin through a Hickman port for 2+ years. Would you recommend the implanted pump? If so, what benefits have you experienced?

  • Michael became a registered member 11 months, 2 weeks ago

    • Hi Michael! Thanks so much for registering, completing your profile, and posting an update. I do not know anyone using the implantable pump, but will put it out as a question to all our members to see if we can find someone who does. Have you discussed the option with your doctor? What have they said about it?
      I’m one of the moderators on our…[Read more]

      • Katkleen,

        I see Dr Robert Frantz at the Mayo in Rochester MN. He brought it up at my recent appointment. There are two people in Rochester who took part in the clinical trial and have had them for five years. Both of them are happy with the Pump vs infusion via an a external pump and Hickman port. I am considering it now. Dr Frantz believes…[Read more]

        • My doctors have stated that the ISR is not available yet (2020) The only ones that have received them are the ones that participated in the trials for now (2019). I hope I can transition to it and get off the pump. Fingers cross…

    • Hi Michael,
      Just following up on what Kathleen has said ! I am one of the forum moderators too so any questions or concerns please don’t hesitate to reach out to either of us. The more conversations we get going about PH on the forums, the better so don’t hesitate on posting your own topics !

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