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    • #26228
      Jen Cueva
      Moderator

      As most of you know, I was in the hospital last week. I had been struggling with some increased PH symptoms. I am grateful that my PH team decided to direct admit me rather than have me go through the ER. He did not want me there waiting for a bed around COVID patients.

      While in the hospital, they were trying to find out why I was having falls and increased dizziness. I would feel fair every time I stand up. I still am having this off and on. I am on some type of “bed rest” as needed but I cannot sit still. I am on the bed, couch, and at my desk.

      While there, they tested me for orthostatic hypotension. They would take my BP lying, sitting, and standing. They did this each shift at a minimum. My BP is already low and that did not change too much. But, one of my nurses noticed that my HR went up 30 + beats and that concerned him. He talked about Postural orthostatic tachycardia syndrome (POTS). POTS is a condition that affects circulation (blood flow). Although they did a few other tests while I was inpatient, this is not a test that we did. I am waiting to hear if and when they are scheduling this test.

      Have you heard of POTS? Do you have POTS with your PH? If so, let’s talk about this.

    • #26230
      Colleen Steele
      Keymaster

      @jenc this is not something I am familiar with so I’m researching.

      Prior to being listed for transplant Cullen has an Atrial Septostomy. It involves the creation or enlargement of an atrial septal defect to allow decompression of the right heart and improved left sided cardiac output. It helped him for almost a year but his body repaired the hole. That doesn’t commonly happen but Cullen always had to be the exception with everything. Just mentioning it because it helped with the increased symptoms that you are experiencing.

      I’ve also knows a few children who has a Potts Shunt procedure which helped them. Has your team mentioned these procedures as possibly an option?

      I might be totally off track but thought I would throw it out there.

    • #26245
      Jimi Mcintosh
      Participant

      “POTS” is new to me , I am
      Researching it, I have been feeling that I am in decline and the dizziness has returned, praying that bed rest will get you back to your normal. We are all going to survive PH, 2020 and whatever else is coming our way. We are resilient

    • #26246
      Jen Cueva
      Moderator

      Thank you, @colleensteele for that information. The doctors did mention a POTS shunt if that is needed and will benefit me. We are still waiting to hear if the tilt-table test is covered and when they can schedule it. I know one young PH local girl who had the POTS shunt several years ago.

      Thanks again for sharing Cullen’s story. I will certainly keep y’all posted.

    • #26247
      Jen Cueva
      Moderator

      Hi, @jimi, with the dizziness, we tend to blame PH often. Well, I do, and it can be caused by other issues, too. Although this will be a new journey, if it helps, I am open and willing to do what it takes.

      I am currently sitting in my recliner, oxygen on, and catching up with y’all. I hate to hear about your decline and increased dizziness. It can certainly slow us down fast! You are correct, we WILL survive, and we are resilient as they come. Thanks for that reminder. I hope that you remind yourself of the same. Take care, Jimi.

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