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    • #33016
      Colleen Steele
      Keymaster

      In my column this week I shared some of the wonderful but ordinary things my son Cullen has been enjoying since his transplant. People often ask what amazing things he has been doing with his 2nd chance at life. Well, I think it is extraordinary enough that he finds joy every in the basic pleasures of living. A whole lot of little things can grow into something magnificent.

      Here is the link to the column: My Son Loves His Extraordinarily Ordinary Post-Transplant Life 

      If you have received, are listed for transplant or considering the option, what “ordinary” things would you hope to enjoy from a 2nd chance at life?

    • #33029
      Jen Cueva
      Keymaster

      Hi @colleensteele, this column had me in tears yet again. Knowing Cullen through your stories, I know how ordinary yet extraordinary he is. I can picture him sharing jokes and laughter with you and the rest of the family. Reading about how he enjoys such simple things that we take for granted is heartwarming.

      This is not about me, but rather my BIL. He is currently on a liver transplant list. When I talked with him on Monday, I heard stories about learning to cook. Before, he would grill or throw beans in the crockpot. But now, with his restricted diet, he is the chef in the house. He even attempted to create a salad dressing that he loves at a local Mexican restaurant. These are simple things that he never enjoyed much and took for granted before.

      Stories like this warm my heart and soul. It gets those warm and fuzzy feels, you know? Maybe because I am a sucker for the simple things in life.

      What about you? As Cullen’s caregivers, what are some of the simple things you find yourself enjoying more? I also think you probably enjoyed simple moments before his PH diagnosis.

      • #33039
        Colleen Steele
        Keymaster

        @jenc I don’t remember you telling me about your BIL until now. How long has he been listed? I will keep him in my prayers!

        A simple thing I really enjoy now is when I get to hang out with both of my son’s at the same time. Witnessing the friendship they have grown into makes me so happy and the fact that they don’t mind spending time with me is really nice too. Sometimes it’s just brief moments at home when we are joking around or just sharing something about our day that make me feel so grateful.

        • #33045
          Jen Cueva
          Keymaster

          Hi @colleensteele, I think I mentioned it in a text a few weeks back. He’s only been listed for about a month. The positive is his scores have decreased. However, he’s bummed as this moves him further down the list. Stability is good, but I can understand his frustrations. But I told him, maybe God will heal him and not need the transplant right now.

          Thanks for the prayers, as always.

          I love that you share that about your buys and their friendship. I admire that from afar. As a mom, I know this is all that our heart needs. That and them both taking time to spend with you at their age is important and says a ton about how they were raised, too. Thanks for sharing such uplifting stories.

        • #33056
          Colleen Steele
          Keymaster

          Ack…you did tell me about your BIL @jenc. I feel bad that it slipped my mind. I used to have such a sharp memory but now I’m lucky if I remember what I had for dinner yesterday.

    • #33037
      Debbie Moore
      Participant

      Great column.  Tears in the eyes.

      • #33038
        Colleen Steele
        Keymaster

        Thank you so much @debbie! How are you doing? What treatments does your doctor have you on right now and are they helping? It’s good to hear from you.

    • #33049
      Carol alexander
      Participant

      Just about everything the list is so long

      gardening,trimming my bushings planting flowers waking down my driveway swimming in my pool and the list goes on

      • #33057
        Colleen Steele
        Keymaster

        @carol-alexander great! I’m happy to hear that you have a nice list of thinks you enjoy doing.

        Here is something random I find a lot of peace in doing. I buy at least two hanging baskets of petunias every spring. They are pretty and easy to care for but what do I enjoy most about them? – I love going out every evening and hand pinching off the spent flowers. I don’t know why I find that so darn relaxing but I really do.

    • #33051
      Jen Cueva
      Keymaster

      Hi @carol-alexander, it’s great to see your post. I’ve missed seeing you. How are you doing?

      So many things, as you mention, those who are healthy take for granted. I often took many simple things for granted before my PH diagnosis.

      I was working full-time, driving myself wherever I needed to go, and walking in places where I now need my wheelchair and someone to take me. I enjoyed cutting the lawn at times and pulling weeds in the backyard.

    • #33083
      V.R. Peterson
      Participant

      I hope you don’t mind hearing from a healthy person who watched her son as he struggled with PH. I never realized how much I took for granted my ability to breathe without having to concentrate on forcing each and every breath of air into my lungs. This realization hit harder and harder the sicker my son got, as I watched him gasp for breath, even when he was on oxygen. There were times when, without thinking, I’d catch myself breathing deeper for him, as if that were going to help.

       

      • #33089
        Colleen Steele
        Keymaster

        @mamabear007 please, always chime in because we want and need to hear from the caregivers too! Oh my gosh, I can so relate to the deep breathing you would find yourself doing on your son’s behalf. That and sometimes I would catch myself holding my breath. I think I was subconsciously reacting to the trauma with – if my son can’t breath than I can’t either! I would have preferred to not learn the hard way how not to take things like my health for granted.

        • #33090
          V.R. Peterson
          Participant

          Oh my gosh, @colleensteele! I did the same thing, holding my breath! It has been so long since his surgery that I’d forgotten about those times.

        • #33091
          Colleen Steele
          Keymaster

          @mamabear007 I had not thought about it in a long time either. Your comment about breathing made me think of it. Our minds must be trying to protect us from remembering too much of the hard times.

        • #33092
          V.R. Peterson
          Participant

          I do believe you’re right, @colleensteele. I know my son and I both suffer from PTSD from that time. I usually do pretty good, then something will remind me of how close he came.

        • #33094
          Colleen Steele
          Keymaster

          @mamabear007 as long as it doesn’t send us spiraling I guess the difficult memories are important reminders to be thankful and not take things for granted. Sometimes the daily routine of life can distract us from remembering where we have been and how far we have come. It’s good to hear from you @mamabear007. I think of you often!

        • #33095
          V.R. Peterson
          Participant

          Thank you, @colleensteele. I think of you often, as well. The first six months after my son’s surgery, I did spiral quite badly. Now I’m much better about remembering to feel gratitude for the improvement in his health since his surgery.

      • #33097
        Jen Cueva
        Keymaster

        Wow, I can only imagine how challenging this was to watch for you and @colleensteele, @mamabear007. I can relate as a mom, and anytime my KK was sick, this compares to PH on such a lower level. We want to do everything for our children and loved ones; breathing is one. Manny often shares this same struggle as a caregiver to me. It’s especially true on my worst day when I feel I may not get another breath.

        As you both share, our minds often try and make us forget the worst times. This had to be one of the worst imaginable for you both. PTSD is expected after going through such a trauma with your children. I bet you both are always on stand-by perse. But grateful that you both can also relax a bit more as your young men are doing pretty well. Please don’t forget to take care of yourselves, now.

        Your feedback and experiences are always welcome. Please share anything that pops into your mind. It’s much appreciated, too.

    • #33107
      Colleen Steele
      Keymaster

      Thank you for always supporting us @jenc. I was just having a conversation with Cullen today about PTSD. He is writing a paper about how Vets were once believed to be the only ones who struggled with PTSD and how it now develops in many forms from mild to severe. I shared with him one of my symptoms that many might not recognize as PTSD. No mater where I am, if someone is distraught I can sense it and even if they are a stranger, I want to help. This sounds like a good thing and it can be but not everyone wants a stranger helping them or noticing their struggle. I often have to fight the urge to interfere and many times there really isn’t an option for me to help…and this gives me anxiety. I experience 2nd hand anxiety almost every day and I swear it is a form of PTSD.

      Then there is the physical form of PTSD. Both Cullen and I experience heart palpitations and other forms of anxiety when we hear an alarm that sounds like his Flolan pump. It’s crazy how often it happens.

      But you know in my case, @mamabear007 and Manny’s, any form of PTSD is worth taking care of those we love.

      • #33118
        Jen Cueva
        Keymaster

        Hi @colleensteele, ask Cullen if he has read the book, The Body Keeps The Score. That was one we did as a BN Bookclub last year. It discusses in detail Vets and PTSD; it’s an interesting read. I believe I shared it here with a member or two who talked about his PTSD related to the military.

        OMG, how you mention you see things and feel they are struggling and need help is something I tend to do. I never noticed it as much. I thought it was just me. But Manny does and says, as you mention, not everyone wants our help. Plus, he reminds me that I can’t save the world.

        Manny has PTSD from his Navy years. He didn’t have much of an issue with it until after some of my tougher PH years. I’m almost sure that this all exacerbates his PTSD.

        I often started feeling swearing palms, anxiety, stomach cramps, and palpitations as we neared the PH Center in Houston. It was across the street from the hospital, where I spent many weeks there. Did you or Cullen experience this when you went to Stanford post-transplant?

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