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    • #29040
      Colleen Steele
      Keymaster

      PH symptoms can be a lot like the weather – constantly changing. Newly diagnosed patients often ask if it is normal to feel fine one day (or even moment) and not do great the next, then bounce back again. The answer is nothing about PH is normal compared to a “healthy” person. Defending your constant change in weather can sometimes feel as exhausting as the disease.

      Most PHer’s can relate to all of this. You do of course need to keep track of your changing symptoms and update your doctor but know that you are not alone experiencing this.

      What is your PH weather like today? Has it changed since you got up this morning? Are you feeling the way you did yesterday? Share the daily changes you experience to help others understand that you are not alone.

      My column last week was about this topic.

    • #29060
      Jen Cueva
      Keymaster

      I love this @colleensteele! PH is like the weather; I totally agree. You did an amazing job on this piece. Yes, I am always a fan, hehe.

      My morning started well, it is damp and foggy, but now, my battery is draining rapidly. It is frustrating for us to acknowledge how fast things change, but others will never get it.

      I am happy that the last false alarm was just that, but man, that was a stressful moment, I am sure. That drive into the city must have been tough. Going home with a sense of relief was a huge relief. I also like the better be safe than sorry approach.

      Excellent column!

    • #29065
      Colleen Steele
      Keymaster

      Thanks @jenc. I might have gotten carried away with the weather imagery but that is how I explain to people what living with PH and even life post-transplant can be like.

      I hope you are resting to help the fog clear.

    • #29072
      Jen Cueva
      Keymaster

      Oh no, @colleensteele, I love that comparison to weather. I never thought of it like that until I read your column. It is true and can change in a moment.

      My fog is a bit better today. thank you.

    • #29109
      KRISTINE
      Participant

      How funny, was all ready to go on here and talk about the weather for Colorado on Sunday Valentine’s day. LOL but we’re talking about weather of p h okay if it weren’t for blonde moments I’d have no moments at all.
      So I started Orenitram about six or seven weeks ago, had an echocardiogram done two weeks ago and found out from the doctor that the right heart valve has gone back to the normal size that it should be and she said it’s the 0renitram that did that. and that’s a good thing. I don’t know what the right heart specific word is valve or vessel or something like that. I’m really unable to remember things cuz I don’t have enough oxygen to my brain that’s my story and that’s how I tell it my memory is just shot anybody else got memory problems really bad? So thanks for reading my post hope you guys are doing good we’ve got Antarctic temperatures out here in Colorado for the last few days keep snowing on top of snow tomorrow we’re going to have a heatwave it’s supposed to get up between 26 and 30 degrees. Hope everybody out there is doing okay hope you had a good Valentine’s day it means a lot to have somebody to share like a Valentine’s day with so if you got somebody to share it with enjoy it life is too short it’s just too short. Okay I’m done I’m not going to go into my reflective thoughts I’m done I just wanted to share the medication thing and the right heart cath with everyone and I hope you guys are doing good

      • #29125
        Colleen Steele
        Keymaster

        @kristine LOL! It was a trick question. I’m sure you weren’t the only one who thought I was talking about the actual weather. So, how is the weather in Colorado?

        On a serious note, I am so happy for you that the Orenitram is helping. Are you feeling a difference in addition to the ECHO looking better? Sometimes it takes a while for the two to catch up with each other.

        In regard to the memory problems, that is common among PHer’s. Here are two former posts that you might find helpful. One of them is about dementia. I’m not saying you have that, just that the discussion as a whole might be worth reading.

        I am also going to start a new post: Do you experience oxygen related memory loss?

        Finding Humor In "Brain Fog" and other symptoms

        And….

        Living With Pulmonary Hypertension and Dementia

    • #29111
      KRISTINE
      Participant

      I hope it’s okay if I posted a whole lot about a lot of topics tonight.? I just have been feeling kind of by myself or alone lately so I just decided to join the conversations and I’m just want to tell everybody thanks for being there. There this won’t be 5,000 words long I’m done thanks for being there guys I enjoy reading your stuff even though I don’t post very much I do read it and stay up on it constantly

      • #29124
        Colleen Steele
        Keymaster

        @kristine you may post as much and as often as you wish, especially when you are feeling alone. That is what we are her for. Living with a rare disease is hard enough, but during a pandemic it can be even more challenging. Do you think that is part of what you are feeling? Are you struggling to be understand by family and friends? I hope you have a more restful night tonight.

    • #29128
      KRISTINE
      Participant

      thank you Colleen

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