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    • #32284
      Colleen Steele
      Keymaster

      Who blinked? Monday can’t be the 1st of November already!

      What is on your medical calendar? Any appointments, new treatments, test or procedures that you would like us to support you through?

    • #32299
      Jen Cueva
      Keymaster

      I know, I agree, @colleensteele. Although my last few months were chaotic as we prepared for the move, the time has flown by.

      I think in October, I tried to squeeze most of my appointments in before leaving Texas. I don’t think I have many this month except labs. I will be grateful to slow down a bit with appointments.

      What about you? Any upcoming appointments for yourself or Cullen?

      • #32319
        Colleen Steele
        Keymaster

        @jenc Cullen was supposed to have an ECHO stress test last week but then he got sick. He still has minor symptoms and they said we can’t reschedule until he has gone 4 days symptom free. Hopefully it will get done sometime this month.

        Have you scheduled any first appointments yet with your new team?

        • #32322
          Jen Cueva
          Keymaster

          Hi @colleensteele, I hope and pray that Cullen is symptom-free soon and can get this stress ECHO done. I know this was one that you were concerned about.

          I also hope that you, too, are feeling better and finally will be over the hump.

          I only have labs thus far because I had a busy last month trying to fit all of my socialists in before leaving. I will plan to hold off as our insurance will change in January, several if possible. But my Texas docs have sent records to several specialists here already if needed before then. I am hoping and praying not, hehe.

          Please keep us posted on Cullen’s stress ECHO and your health, too.

    • #32305
      Debbie Moore
      Participant

      I start my first dose of Orenitram tomorrow.  I hope the side effects stay away and the drug helps me breathe!

       

      • #32315
        Colleen Steele
        Keymaster

        @debbie thinking of you today as you start your Orenitram treatment. Update us when you can on how you are doing. If you experience any side-effects hopefully they will be minimal and not last long. Most of all, I do hope it helps your breathing!

      • #32323
        Jen Cueva
        Keymaster

        Hi @debbie, thinking of you today as you start your Orenitram. For me, when I started, it helped to take each dose with. a little food.

        I am no longer on it but remember to report any side effects to your PH team and also that it may take several weeks before you notice any difference. Our bodies are different, so it takes time for our bodies to adjust to the dosages/titration of each treatment.

        Please know we are here to support you as you begin this new treatment journey. Please keep us posted on how you feel and ask any questions for those who have experience with Orenitram.

    • #32332
      Debbie Moore
      Participant

      I’m two days into the Orenitram and NO side effects!  I have all the side effects with my other medicines, so this is a relief.  I’m not noticing any difference in my breathing yet, but that could take a while.  But I have hope.  I so hope the oxygen machine can go away.  I know that it may not, but I can hope.

      • #32352
        Jen Cueva
        Keymaster

        Hi @debbie, I am so happy to hear that Day 2 of Orenitram and NO side effects. I hope and pray that this continues for you.

        As I mentioned, it may take some time before you notice any improvements. I love that you have a goal and the optimism that you may have a chance to lower or cut out some of the oxygen needed. Do you have a pulse ox at home to check your stats?

        I am also on that mission. I was on oxygen 24/7 when diagnosed. Then it decreased some until COVID last year. Now back on it 24/7, but since I am in CA, I see improvements in my breathing. My goal to it to get to my pre-COVID oxygen usage before the first f the year.

        Thanks for the update. Would you mind keeping us posted as you continue your Orenitram?

      • #32377
        Colleen Steele
        Keymaster

        @debbie yay to no side-effects so far!! Every medication is different but I can tell you that whenever my son started a new treatment sometimes it could take a week or two before he would feel an improvement. So keep your positive attitude and I pray that soon you will update us that the new treatment is helping.

    • #32364
      Debbie Moore
      Participant

      Just got a call from Pulmonary Rehab.  I’ve been on the waiting list since July, and they now have an opening.  Initial assessment is next Wednesday, then Tuesdays and Thursdays for 36 meetings.  My November calendar is filling up fast!

       

      • #32368
        Jen Cueva
        Keymaster

        Wow, @debbie, it sounds like things are starting to fall in place for you this month. Yes, a busy month, but I am hopeful that this all will help you gain some strength and enjoy some of the things you did before PH.

        You got this! What are you looking forward to gaining strength and doing? Please do keep us posted.

        • #32369
          Debbie Moore
          Participant

          My first goal is to do stairs.  I own a store in a small downtown.  I can park in the back, but I have to take a flight of stairs.  I would like to park in the back instead of of the main street where my customers would prefer to park.

        • #32378
          Colleen Steele
          Keymaster

          @debbie forgive me for sounding like a mother hen for a moment. The stairs sounds like a good goal, as long as someone knows you are taking them when you do, at least until you know you can handle them without issue. I would hate to hear about you having an event while climbing them and no one knowing you were there.

        • #32381
          Debbie Moore
          Participant

          Thanks for the care, but no worries.  I’ll make sure I’m able and have someone with me.  I think it will be awhile, but I am looking forward to it!

        • #32395
          Jen Cueva
          Keymaster

          @debbie, I agree with Colleen. Taking the stairs is a great goal, but please be careful. I think we often want to push our bodies; that’s normal, but listening to our bodies is crucial, too.

          This is after you have completed some of your pulmonary rehab, correct? I have also been trying to do a bit more since I can breathe better here in San Diego. But, I also notice that my body crashes early o those days.

        • #32428
          Debbie Moore
          Participant

          I wasn’t planning on the stairs until pulmonary rehab was showing great improvement.  I went for my assessment today and could only walk 1 1/2 min before my oxygen started to plummet.  They have a lot of work to do to get me moving and ready for stairs!  I start Tuesday.  I’m very excited.

        • #32436
          Colleen Steele
          Keymaster

          @debbie I am excited for you and I can’t wait for the day when you tell us you did those stairs!

        • #32447
          Jen Cueva
          Keymaster

          That sounds like a plan, @debbie. Slow and steady, my PHriend. I am excited for you and look forward to hearing more about your experience with pulmonary rehab.

          You got this!!

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