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    • #33574
      Jen Cueva
      Keymaster

      Hello March! The time is certainly flying by this year yet again.


      @colleensteele
      and I want to check in on y’all and ask what plans y’all have this month? Do you have any upcoming appointments, tests, treatments, or procedures that we can support you with?

      Some may have Spring break this month if you have school-age kids or a teacher. Although, I think my friend, a teacher isn’t out until April.

      Share these appointments with us, so we can send you positive thoughts and prayers on those days.

    • #33588
      Jen Cueva
      Keymaster

      Hi @brendad53, we continue to hold your hand as you go for your RHC/pulmonary angiogram tomorrow, 3/8/22. You have come this far, and I know your anxiety must be creeping up. You’ve been courageous through this long process. How are
      doing to prepare yourself mentally?

      I’m sending you extra love, hugs, and prayers for all to go well, and your doctor will get some much-needed information from the tests.

    • #33590
      Brenda Denzler
      Participant

      Thanks, Jen. I’m trying to stay busy during the day, getting this and that done. Preparing to be unable to lift much for at least 24 hours afterward, etc. At night, I’ve been having trouble sleeping through. I wake up in the middle of the night and have trouble getting back to sleep. Deep dread.

    • #33597
      Jen Cueva
      Keymaster

      Hi @brendad53, hopefully by now, your RHC is completed or almost. You made it this far; congrats! Let us know how things went as soon as you feel up to it. How are you feeling afterward?

      It sounds like you need some sleep and probably will once you get this behind you. Is your interrupted sleep due to PTSD? I’m guessing that, along with some anxiety before your procedure day.

      I’m holding your hand gently as you continue this journey.

      • #33602
        Colleen Steele
        Keymaster

        Been holding you in prayer and thought @brendad53. I hope all is going well and that you get the answers you desperately need.

    • #33733
      Terry
      Participant

      G’Day, Had an Appointment with my pulmonologist today to catch up on latest tests. Seems my pressure is settled at 65 which is not that bad . Saw Rheumatology last week and finally got the all clear re Giant Cell Arteritis after being off the methotrexate for 12 months so discharged. So five years of Prednisone and Methotrexate was all worthwhile. Six monthly blood tests with GP is enough,
      I explained to the pulmonologist that with exercise such as running ( I wish ) up a flight of stairs etc. stamina is ok but once up top I feel I can’t breath and the heart is pounding so we discussed just how far one can push themselves with exercise . In other words where once where it was good to push that little bit extra not now , back off but puffing is ok. I am also going to give tadalafil another go with the macitentan to see if there is any improvement . Pressure was 52  before I stopped.  Aside from that loving life . Meaningful song? ‘Don’t worry be happy’

    • #33740
      Colleen Steele
      Keymaster

      @terry great song! Somehow it makes me laugh when life is crumbling around me.

      It sounds like your pulmonologist is giving you sound advice. When you say you received the all clear regarding Giant Cell Arteritis, does that mean you are in remission? If I’m reading that right, congratulations!

      • #33744
        Terry
        Participant

        Remission sounds like a good word. They say it may come back and be aware of the symptoms . The Ophthalmologist who checked me out in 2018  said due to the  damage to the artery behind my right eye I will probably lose my sight within 10 years yet second opinion said sure its damaged but ‘don’t worry be happy’

        • #33751
          Colleen Steele
          Keymaster

          @terry I’m sorry I lack knowledge in this area. Is there a procedure that could possibly be done to repair the right eye? I know you make a valiant effort to maintain a positive effort but that is quite a dark cloud that first doctor has chasing you. I’m all in for the encouragement the 2nd doctor provided!

        • #33755
          Terry
          Participant

          Unfortunately not ,once the optic nerve parts …so why worry.
          ‘serenity to accept what you cannot change ,courage to change what you can and wisdom to know the difference’.

        • #33787
          Jen Cueva
          Keymaster

          Hi @terry, I’m sorry to hear that they can’t do anything to help your optic nerve. Your optimism is admired and contagious. Thanks so much for sharing such positivity despite any troubles you’re going through.

          How are things in Aussieland this week? I’ve been on vacation and may have missed any other updates.

    • #33763
      Carol Volckmann
      Participant

      Well, March came in like a lion – my Hickman line just slid out and I just stood there holding the end in my hand.in the car, catch the ferry, emergency room at UW, get hooked up to one of their pumps after extreme pain trying to find a vein but hitting nerves every time. After many hours I was admitted and the next morning a new Hickman line was put in.

      All is well again. We are loading up the motorhome to go and visit the kids in CA. We have not seen them fir 2 years. We do not want to fly nor stay in hotels nor leave our 12 year old golden, Spirit, so … it is taking our motorhome.

      Getting together not only all my PH stuff but now it also includes all my ostomy stuff. We are all set and ready to go tomorrow early.

       

    • #33769
      Colleen Steele
      Keymaster

      Oh no @cdvol3gmail-com that happened to once to Cullen! I picked him up at extended care after school and I immediately noticed something on him just didn’t look right. It took a moment for my mind to process that his line was hanging out of his shirt, unattached to his chest! He was on IV Flolan…that CAN’T be stopped or risk a major PH crisis.

      I’m afraid in front of children a few choice words slipped out of my mouth as I felt panic set in. Cullen had no idea how long he had been without his medication. Long story short, he was in the hospital for a few days and had a new line placed.

      His body had apparently been slowly rejecting the line. It basically said, you don’t belong here, and popped it out. What his surgeon did was tie a blue metal staple of some kind to the point in which they would not want his line to come out any further. If Cullen ever saw the blue he would know he needed to get to the hospital ASAP before he would lost the line. Maybe your doctor can do the same for you if there is concern your body might reject it again.

    • #33788
      Jen Cueva
      Keymaster

      Hi @cdvol3gmail-com, by now, you should be enjoying your travels and hopefully spending time with your grandchildren. I know that you and Dick have been looking forward to this visit.

      Your issues with your Hickman must have been frightening and exhausting. Like @colleensteele shares, I’ve heard of others whose bodies push the lines out. The small sutures or staples are what they have found to help. I hope and pray this is the last time for you, my PHriend.

      Be safe in your travels, enjoy, and please let us know how things went once you return and rest. Traveling with your Hickman and ostomy must be challenging- hugs.

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