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    • #32855
      Jen Cueva

      Wow, where has the time gone? My apologies as I missed welcoming some of you, our newest members.

      As we continue to grow our close-knit PH community, our hearts grow larger. Hearing all of your stories and watching the support in our forums makes my heart happy.

      We have many new PHamily members. Please help me welcome @debbie, @mariaagneta66, @rachb, @cuddlesbf, @nanaakwasiagyenimboateng, @maryshann, @williampatterson, @lsworsham, @dawnie911, @plansman, @rynn2, @sammygrl33, @guzu085, @sammyb, @chiefswife1994, @pamelacampbell, and @lindybear, to the forums. My apologies if I left anyone out.

      I hope you all have had time to look through some of the posts shared by others.

      If you have not yet, please introduce yourself a little. Here are a few suggestions to help get you started.

      Your name and location?
      Are you a patient or caregiver?
      How long ago were you diagnosed with PH?
      What PH medications are you currently on?
      Do you have any questions for our members?

      We look forward to learning more about your PH journeys. If y’all have any questions about the PH forums, please reach out to me or @colleensteele.

    • #32858
      William Patterson

      Hello, I am a caregiver for my wife who has PH.  We live in Pleasant Hill. She had some small mural-type blood clots a few years ago and then a few others even though she was on a variety of different blood thinners to see which worked and the cost.  She is not on Eliguis but at $400 it is tough.

      Here pulmonologist has got her scheduled to start on one of two pills that are supposed to reduce the backpressure from her lungs by reducing the blood pressure in the veins of her lungs. One is called, Opsumit and the other is Adempas.

      Anyone ever used these or know if they work? We are waiting for her pulmonologist to tell her which one to start.

      • #32863
        Colleen Steele

        Hi William. Here are links to conversations we have started regarding Opsumit and Adempas. Feel free to comment and/or ask more questions about them. We have members who have taken these.



      • #32874
        Jen Cueva

        Hi @williampatterson, welcome. I can relate and don’t know what I would do without my husband, Manny. Your wife is fortunate to have such a supportive husband. You guys are God sends.

        I have been on both Opsumit and Adempas in the past. Adempas was most recent. But it wasn’t a good fit for me. Keep in mind that everyone reacts differently to these treatments. Because your wife has had blood clots, my guess is they will probably try Adempas as many with blood clots have done well with this one.

        Also, it takes some time to see results when starting a medication. Usually, they are started at low dosages and titrated up (increased) every week or so.

        Colleen has shared with you our conversations, a great resource, on these two meds in the past. Feel free to ask any questions you have, and we will do our best to support you.

        I’m looking forward to hearing more about your and your wife’s PH journey. PH treatments are also costly. But most have copay assistance funds that help. You may want to ask the PH nurse about this if she hasn’t mentioned t once they decide.

    • #32860

      Thanks for the kind welcome. My name is Linda and I live in Iowa City, Iowa. I was just diagnosed a month ago and tomorrow I see my cardiologist for the first time. I had Covid last year and I am wondering if that could have affected my heart. I guess I will get my answers tomorrow. I have one question and I hope you can help me. I plan to move to California in April and I will either fly or take the train. Is it safe to fly or take the train over the Rocky Mountain range? Thanks.

      • #32864
        Colleen Steele

        I’m sorry you had reason to join us Linda, but we are glad that you did. All the members here are wonderful. You will feel very supported.

        PH patients can fly and take the train but it’s best if you have a discussion about it first with your doctor. Do you have a PH specialist yet? Especially going over the Rocky Mountains or if flying, your doctor might want you using supplemental oxygen. The cardiologist should be able to advise you but I highly recommend asking for a referral to see a PH Specialist and be followed by one in the near future.

        Have you looked into where you will see medical care in CA? My son was seen at LPCH (Stanford) and @jenc and a few others can advise you about other excellent facilities.

        Best of luck with the move!

      • #32875
        Jen Cueva

        Hi @linda, I am in the San Diego area in CA> Which area ate you moving to? I also know a fantastic PH center at UCLA besides UCSD and Stanford, as Colleen mentioned. There are others, too, depending on the location.

        I’m sending you positive thoughts and prayers as you have your appointment with the cardiologist today. Is this at a PH center or an actual PH specialist? That does make a difference.

        Flying and traveling by train is OK for most with PH. I would double-check with your cardio. That’s great that you already have oxygen; this will help you travel.

        I also had COVID last year. All I can say is that it certainly can affect all of our organs. This is more so if you already had other underlying conditions. But, hopefully, your doctor will give you some more clarity. Although, I still think there are so many unknowns with the after effects of COVID.

        Please know that we are here to support you and look forward to an update after seeing the cardiologist.

    • #32861

      I forgot to add that I am not on oxygen therapy.

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