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    • #27755
      Colleen Steele

      Does PH ever make its way into your dreams? If it does, is it in nightmare form? When you see yourself in dreams do you have PH or are you unaware of having it?

      I have definitely had nightmares about PH, even post-transplant. They often revolve around caring for Cullen’s central line and Flolan. But I also have had nightmares about trying to balance everything between PH and life in general.

      Tell us about your dreams. They don’t have to be about nightmares. Maybe you have had some happy PH dreams. I would love to hear about those too.

    • #27766
      Jen Cueva

      Great topic, @colleensteele! I often have dreams where I am running. Most often, it is running up a flight of stairs. I have no oxygen or wearing a backpack in these dreams.

      But, I also have had nightmares; usually, this has been when I am having rough days or the night before an appointment or procedure.

      As a mom and a caregiver, I can only imagine the nightmares of trying to balance it all. Did you ask Cullen this? I would like to know if he more pre or post-transplant. How about you?

      So, I do have both, and I bet most of us have. I hope to hear more from others, too.

    • #27829
      Jimi Mcintosh

      Dreams are more like a repeat episode of the walking dead. It is like someone turns off the oxygen and you wake gasping for air. I try to turn my mind off, focus on positive things like the COVID vaccine actually cures PH. I know that I am losing it,3 operations, 7 COVID test, kidney is still stage 4-5.

      My energy level is very erratic and minimal activity is exhausting. Good news, my vision is now 20/80 promises to get better after the cataract removal.
      I still remain positive that I will see some improvement by mid-2021. I dream of better days, taking a trip cross country.

    • #31038
      Colleen Steele

      Since I had a nightmare last night I thought I would bring this topic up again.

      Last night I had a really bad dream about Cullen. I haven’t had a bad one in a long time. I know what triggered it. He has been experiencing some shortness of breath and minor chest pains lately. Nothing too severe but enough to remind me that his health will always be fragile.

      I dreamt that I approached Cullen’s hospital room and was stopped by a doctor who told me he passed away. Shocked, I slowly walked away without asking to see him. Next thing I know they are removing his covered body and I start screaming that before they take him I need to see him and hold his hand one last time.

      Such a horrible dream! Anyone else experience really bad ones like this? Do you find it kind of lingers with you throughout the day? Is there anything you try to think about as you fall asleep to lure your dreams into a more pleasant direction?

      How are you managing your dreams these days @jimi?

    • #31062
      Aunt Lizzie

      Well I don’t know if it’s PH or COVID, but I have been having the most vivid dreams for the past few months.  It’s been a year and a half of worrying about going to the shops or using public transport in case I contracted COVID, and now we are halfway through a 3 week lockdown here in Sydney so perhaps it’s just me getting out and about without contravening lockdown regulations.  No nightmares just very busy dreams with lots of characters in them.   Now I just have to work out how I can go grocery shopping in my dreams – that would be helpful.

      • #31070
        Colleen Steele

        @auntlizzie is the 3 week lockdown part of your dream or has that really been happening? If so, is it because there have been a flux of Covid cases again? It must feel like a living nightmare.

        Had to laugh at your thought about grocery shopping dreams. I often have dreams where I accomplish something I have been putting off and it’s so disappointing when I wake and realize…nope, still needs to get done!

    • #31079
      Aunt Lizzie

      Hi Colleen.  Nope – the lockdown is not a dream – it’s real, and we are waiting to see if they add another week on that.  Quick in and out grocery shopping and no browsing, only 2 can exercise outside together, 10 people at funerals, not to go more than 10 km from home, etc, etc and of course masks everywhere.  As the hot spots creep closer to my grocery store, I am starting to dig in to my atomic war supplies such as dried goods and frozen stuff.   It may sound a low number to anyone in your neck of the woods, but yesterday’s number of confirmed cases was 439 just in our State, and mostly in Greater Sydney area.   I am totally Pfizered so should be OK if I do catch something. Educational Webinars are keeping me sane.

      Keep safe.

      • #31091
        Colleen Steele

        I’m really sorry to hear this @auntlizzie. In my area I feel like things have gotten too lax. I don’t want us to be in lockdown but it’s bothering me that in most areas people are no longer expected to wear masks. Wouldn’t a happy medium for your area and mine be nice?

    • #31092
      Colleen Steele

      As I mentioned I recently had a bad nightmare about my son/It inspired this week’s column. Share whether you can relate or not.

      PH and Transplant Can Feel Like the Stuff Nightmares Are Made Of

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