Viewing 5 reply threads
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    • #34207
      Jen Cueva
      Keymaster

      Forum member @gemsy-elizabeth shares that her pulmonary pressures have decreased 50% since diagnosis. She responded to the nitric oxide vasodilator test and was started on a calcium channel blocker (CCB).

      Were you a responder to the vasodilator test and started on a CCB? If so, which one? How are you doing now?

    • #34208
      Jen Cueva
      Keymaster

      Hey @kygon, I shared another link about the vasodilator test in the above post that you and others may find helpful. Check it out, and hopefully, others will share their experiences with this test and CCBs.

      I hope that you, Bryan have a relaxing weekend, despite the challenges with Uptravi.

    • #34232
      Jen Cueva
      Keymaster

      Where are our members who did respond to the vasodilator test and calcium challenge blockers were your first PH treatment? I know that we’ve seen this topic pop up throughout the years. We want to learn about your experience.

    • #34294
      Jessicasomeone
      Participant

      I’m a responder, I’m currently on ccb, Opsimut, Lasix, and Sildenafil. My RHC showed that my pressure went from 86 & heart failure last June, to 25 mm Hg at my RHC this April. I’m feeling so lucky, hopefully the return to work goes smoothly!

      • #34307
        Colleen Steele
        Keymaster

        Again, welcome @jessicasomeone and wow, congratulations! Like @jenc mentioned, it gives others hope to read about the success someone else is having with treatments. Best of luck on your return to work. What do you do for a living?

        • #34315
          Jessicasomeone
          Participant

          Thank you 😊

          I’m a child care director

    • #34300
      Jen Cueva
      Keymaster

      Wow, that’s an excellent response, @jessicasomeone. I’m so happy that you shared this update to offer others hope.

      What type of work do you do? Is it labor-intensive? Please keep us posted on your return to work.

      • #34316
        Jessicasomeone
        Participant

        Hi there. Just to add my CCB is diltiazem 2×180 mg and I’m also on spironoctalone 25 mg. My job is not necessarily  labour-intensive, I used to be able to pick up donations of food to use in our inner city childcare center. Upon returning I will need to find a simpler way for me to manage the lifting and physical part of my job. I don’t really think that was a requirement but it was just something that I took on! I’m worried about sitting and tiredness. I still sleep 9-12 hours every night. I’m wondering if this will change.

    • #34329
      Jen Cueva
      Keymaster

      Thanks, @jessicasomeone, for sharing a bit more of your story. I hope your CCBs and diuretics will help, and you find yourself napping or sleeping less. I have weeks to go with sleeping the usual or norm for me. Then bam-days when I need a nap constantly, and no sleep seems to help. Can you relate?

      It sounds like your child care director’s job is labor-intensive to lift and pick up the food donations. I was trying to volunteer for food banks and was told I needed to lift 40 pounds. Unfortunately, they didn’t accept me as a volunteer because I could perform other lighter tasks.

      Since it’s not a requirement, perse, maybe someone could do that task or ride with you to do the lifting. But, I can only imagine how busy you are and how many young children you help.

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