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    • #16655
      Kathleen Sheffer

      To what degree do you feel in tune with your body?

      Lately I have not felt very in tune with mine. I am having chronic back/hip/shoulder/neck pain —basically the whole right side of my body aches. But I hadn’t taken any Tylenol until last night! It made me feel so much better and allowed me to expend brain power on activities other than trying to ignore the pain.

      My transplant surgery and the intense regimen of medications I started forced me to pay more attention to my body. I had to get ahead of pain so I wouldn’t have my energy zapped by it. Now I feel like I’ve gone back to the complacent mindset I had before transplant.

      When I had PH I trained myself to ignore pain. Stomach aches could keep me bed-bound if I didn’t ignore my bowels and push through to go about my day. Can anyone relate to this strategy?

      But noticing symptoms can be critical to survival. My health is a lot more stable now and I’ve slipped up. I used to pay more attention to my food and water intake and any changes in mood and concentration.

      What do you do to check in with yourself?

      My limits are less defined post-transplant, but I occasionally hit a wall, physically, or more often, mentally. How do you learn about your limits, especially when they change?

    • #16659
      Cris Dingman

      Kathleen, I don’t mean to pry, and you can choose to not answer the question. My PH doctor several months ago mentioned that next year we should think about transplant and getting ready for starting the process. Scary, scary stuff for me. After reading some of your posts about ALL the meds and checkups and testing you go through POST transplant, is it not just swapping one set of issues for another? I know you have done way more now than before; skiing, hiking, etc. Can you reassure some of us who may be staring this in the face soon about how it IS better? Thanks, and sorry is this is too invasive.

      • #16665
        Brittany Foster

        Really good question Cris ! I’m sure Kathleen will be able to answer this. I haven’t had a transplant so I can’t speak to this question but from my friends that have had transplants, they tell me that it’s like swapping one thing for another but the life they have POST transplant is well worth the battles they are currently dealing with. At least the few friends that I have that had transplants tell me that. I can’t speak for all transplants though. Just the friends I have had contact with.

      • #16670
        Kathleen Sheffer

        Hi Cris @crisincincy! I’m an open book so never feel like you are “prying.” I think it’s fair to say I do more regularly scheduled testing post-transplant than I did with PH. I take more oral medications to prevent rejection and infection than I took to treat PH and other symptoms.

        BUT I felt awful every day with PH. Now I feel pretty good and very strong every time I do a checkup or take my pills. Nearly every appointment I’ve gone to in the last 2.5 years has included “you’re doing really well,” and “everything looks normal.” Those are not phrases I ever heard with PH.

        It is a whole lot easier to take care of my body when I am feeling well.

        I don’t have to cart around an infusion pump and oxygen tank and I don’t have to mix IV medicine when I am feeling fatigued and nauseated. Showering doesn’t zap my energy, and I don’t have to do a sterile bandage change after it. All of this adds up to a huge quality of life improvement for me–not to mention the hiking and rock climbing and cycling and singing and dancing.

        Transplant is absolutely swapping one set of issues for a different set. I had a transplant because I was going to die without one. So I consider the choice I made to have been in favor of life with a new set of issues over no life at all. Given the shortage of transplantable organs (especially lungs), this is absolutely always the case.

        Transplant evaluation is never done too early. It’s critical to start the process before you are in a crisis. The team can give you tools to delay transplant as long as possible.

    • #16664
      Brittany Foster

      Kathleen this is a really good topic. I feel like for a lot of us (at least for me) I ignore pain or try to push through it as a defense mechanism. I have learned the hard way that “ignoring pain” or keeping my mind distracted on something else just slowly lets it build up until it gets to the point where it all sort of hits me at once and I feel overwhelmed by it. So I go from “I can handle this to “I need an IV of pain meds” real quick. When I notice that I’m blocking my own pain signals I know when I’m distant from my body because it’s like I almost “disassociate” myself from my own suffering. This can be helpful in the short term, but in the long term it’s a complete mess. If I am too overwhelmed by my physical distress, I go to the hospital if I can’t manage it on my own. I try to “check in” by just laying in bed, closing my eyes and doing a “body scan” while breathing in and out. It’s actually a type of meditation but it helps me recognize how I’m feeling and acknowledge how I’m feeling without judgment and then I check in with that part of my body through the day. I try to do this “scan” a few times a day though.

      • #16671
        Kathleen Sheffer

        I’m the same way, Brittany. I think you may have had that experience recently too–you’ve been so patient without eating for months and now you’re at a breaking point. It’s a survival mechanism that I haven’t found a satisfactory substitute for.

        Love your body scan routine! I probably do this a few times a month, so I can definitely improve in that area.

        • #16676
          Brittany Foster

          EXACTLY!!! I was so numb to it all for the months that I spent in the hospital from November to January and then just was numb after the hospital stay because I think I was just in complete shock over everything that was going on but when it hits me BAMMMMM it really hits me. That’s why I have been really trying to commit to the “scan” of my body right before I go to bed, right when I wake up, and when I lay down or rest during the day. Even just try it every night before you go to bed to get used to it and practice it! Let me know how it goes 🙂

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