Hello Everyone,

This blog post is in honor of my mom, who asked me to share my “firsts” post-transplant—like my first shower and meal—so I thought I’d share some reflections.

Before diving into that, a few quick updates:

I returned home last Wednesday since Barney is now symptom-free, and it’s been wonderful to be with him and my family.

After my first three blog updates, many of you responded with kind words about my writing and even suggested I write a book. Thank you—it means so much. I’ve been refining my craft through writing classes over the last three years, and I love the encouragement. I also welcome feedback. If something resonates with you, let me know. If a concept feels cliché or needs more detail, tell me—I want my writing to improve.

And yes, I am working on my second book, likely a memoir, though it’s tricky since I’m still living through the experience rather than reflecting on it in hindsight. Lastly, some of you asked if you could share my emails or add someone to my list. Yes, feel free to do so, and thank you for asking!
Now, back to my “firsts.” These moments—like my first shower and meal—were not the triumphant milestones I expected. Instead, they highlighted the unpredictability of my new normal and how my experience of anticipatory cognition has shifted.

To set the stage, let’s first talk about anticipatory cognition (I think this is the correct term. My psychology friends, if I’m wrong please correct me)—the process of imagining future ideas or events. Based on conversations I’ve had as a friend and coach, I suspect many people experience it the way I do. For me, it often means crafting an idealized or dramatized version of an idea or event in my mind. Some of these visions turn into reality, while others remain in the realm of imagination, offering a rush of excitement—like a dopamine high—followed by the letdown of knowing I never chased them. The moments I do bring to life rarely unfold as expected. Sometimes they surpass my dreams, sometimes they fall short, but they’re always different. The emotions that follow can be worth processing, ignoring, or simply letting go.

Showers pre-kidney injury, for example, used to be routine. I was semi-present, letting my mind wander through the day’s tasks. That changed dramatically with my first shower 33 days into my initial hospital stay in 2024 after my kidney injury. My nurses kept me clean with baby wipes, but it wasn’t the same as immersing myself in water. To make matters worse, a temporary central line catheter had been placed in my neck for dialysis. Because my blood wouldn’t clot properly, I bled for 24 hours straight, requiring my nurses to change my gown, dressing, and sheets every hour. While the bleeding eventually stopped, clumps of blood remained in my hair, and the only way to clean it was with a rinse-free shower cap and a comb—an unpleasant experience. My hair remained unwashed for three weeks.

To distract myself as I laid in my hospital bed, I imagined my first real shower. I envisioned it as smooth, exhilarating, and deeply satisfying. When I was finally allowed to shower two days before my hospital release, the nurses covered my semi-permanent chest catheter with plastic bags. But within minutes, the steam melted the adhesive, forcing me to start over. Despite the struggle, I relished every drop of water cascading over my body—like a soldier finally showering after months in the field. Brownish water swirled down the drain, a reminder of how much grime had built up. It was both ecstatic and imperfect, but I felt content afterward.

Once home, showering remained an ordeal. My catheter had to stay dry, covered carefully to prevent infection. Since the central line led directly to my heart, even a small amount of water could be life threatening. My bathing routine became methodical: rinsing my legs and left arm, covering my chest with a towel, then carefully washing my hair. I had previously showered daily, but during dialysis, I switched to every other day because the process was so tedious.

Fast forward to my first shower after my kidney transplant. I thought it would be divine, like my first hospital shower the previous year. Instead, the high doses of steroids had my mind racing—not in a good way. The removal of my chest catheter left my skin raw, so every drop of water stung like hail pelting my body during a storm. I didn’t enjoy it; the shower was something I had to do just to meet basic hygiene expectations and I was disappointed.

It wasn’t until my third shower that something shifted. My chest had started healing, my mind had settled a bit as I adjusted to the new medication, and I felt more present. I enjoyed the warmth of the water and the ease of stepping into the shower without it being an event. It wasn’t the excitement of a brand-new experience, like watching my one-year-old son discover something for the first time, giggling as he repeats it over and over. Instead, it was a return to something familiar, but with subtle differences. Unlike before my kidney injury, I now noticed the sensation of water droplets gently sprinkling off my skin. I also appreciated that I could have a familiar shower experience again, simple and non-eventful with a touch of recognizing something new such as the shower drops.

This shift showed up in my first meal too. Before eating, I imagined savoring every bite as if food were brand new to me. Instead, I scarfed down lasagna and stuffed peppers—a habit inherited from my dad. But even in that familiar act, I noticed the sweetness of the sauce, the richness of the meat, the warmth of the meal. The food wasn’t different, but I was paying attention in a new way. Even the smallest details made the experience delightful.

These realizations make me feel like I’m stepping into a third chapter of my life. A friend of my mom’s recently said, “Your life can go back to normal now.” But normal doesn’t mean what it once did. I had my pre-transplant normal, my End-Stage Kidney Disease normal, and now, I’m figuring out what post-transplant normal looks like. And I’m recognizing that my experience of anticipatory cognition is changing with this new normal.

Before my kidney injury, normal meant trusting my body to recover from minor ailments without a second thought. If I caught a cold, I’d recover. If I had a stomach ache, I assumed it was food poisoning and that I’d feel better in a day or two. That kind of predictability is gone. When my mom’s friend made that comment, I found myself saying, “I don’t know if it’s going back to normal. I don’t know what my body’s capacity will be, and it’s constantly changing.”

What has changed is that I still have my anticipatory cognition, but I don’t have the predictability of my body, and that’s transformed two parts of my experience. I still have my imagination, but I’m more present and have more gratitude in the lived experience, paying attention to details I hadn’t before, like the droplets of water in the shower or the tang of tomato sauce. I’m finding myself giving permission to have my imagination, but slowly detaching from my expectations—and the disappointment that often accompanies them. It makes it so much less disappointing when things don’t go my way.

This new normal isn’t about settling into a place where everything feels stable. It’s about navigating life with the awareness that my body and health will likely always be in flux. It’s no longer depending on a stable, well body, but appreciating it when it is stable. It’s sitting in the space of having an imagination but also staying unattached to the outcomes and appreciating the details I hadn’t noticed before. I’m finding wonder in the in-between spaces, in the quiet moments of noticing. Maybe this is what my new normal is now, and I’m staying open to it changing.

Signing off for now.

With love,
Danielle