The Adventures of Kidney Boy

A Journal About Living With End Stage Renal Disease. Dialysis. Transplants. Love. Family. Friends. The Unsung Donor. This is my life, from the end of a needle to the bottom of a pill bottle.

Monday, November 30, 2020

The Memory of old National Geographics and other musings...


It's funny what triggers memories; and how memories can be so intrinsically tied to a person. I saw a picture of someone's collection of National Geographic Magazines, and I remembered being a child and over at my maternal Grandparent's house. In the basement, my Grandpa had built these shelves on one side of the room, and filling them were loads of National Geographic Magazines dating back years and years... I still remember the distinct yellow color of the binding, and I remember the way they smelled... that old book smell, but slightly sweeter. I was obsessed with the world at large - living in a small town like Minoa, knowing there was a whole wide world out there was something that just intrigued me to no end, and pouring over his back issues of National Geographic was a way to see the world without going anywhere. And it was interesting to see how the world changed and how the journalism changed over the many decades of writing. The look of the magazine remained essentially the same though over all those years... yellow binding/cover - a photo shot, and the words National Geographic emblazoned on the front. I was lucky that he let a grubby little kid like me peruse his magazines - I could have easily destroyed them unintentionally just by being a kid, but I think he could tell my thirst for knowledge and the adventure that came with it was something that drove me. I'll never forget those magazines, in that room in the basement - the same room our large family huddled into for Christmases and other holidays. The room we still huddled into year after year as my Aunt and Uncle bought the house when my grandparents decided to move. The magazines were gone, but my Uncle put something just as important to me in their place: his collection of Vinyl record albums. And, as an aspiring teen musician, I was only too happy to comb through those records, look at the covers and inserts and my Uncle was only too happy to play the music I'd find. It was another adventure I found, and the notes from those albums still ring in my ears today. When I think about it, I went a lot of places in that basement without actually moving. It's almost like a quantum meditation on learning, really, and I still feel that every time I get to step into that room.
So, yeah, just seeing a picture of a collection of National Geographic Magazines sent me off on this memory tangent, but it's beautiful that I have this memory stuck in my mind. I'm glad my brain is cluttered with these kinds of moments, because in the end, that's all we have. The memories of those moments - those great moments, big and small. And I was lucky enough to remember to catalog what could have just been a mundane moment in life, for now... it's undeniably precious.

Sunday, November 29, 2020

 I'm still processing the fact that I've had a THIRD kidney transplant in my lifetime.  I was 25 when I had my first, 33 when I had my second, and 42 when I had my third. Where has the time gone in my life?  

For a few years there, I thought I had it all.  2020 changed everything.  I lost everything that was important to me, and yet here I've gained my life and my freedom back.  Now to rebuild.  But, I honestly don't know what I want in life for myself any more.  Outside of being the best Dad to my kids, I don't want anything else any more. I just don't.  All the things I chased when I was younger, success, money, acclaim... love. I don't want 'em.  I've been there, and lost that.  Don't have a desire to do that again.  I just want to live well, take care of myself and my kids, and try to enjoy what time I have left here on Earth.  

My body is healing, and the kidney is working.  It's going to take my soul longer to heal, I think.  I'm getting okay with that.  But from time to time, the pain aches in my heart and I have to find new ways to deal with it.  More positive ways.  Now, I'm going to try to be more active. Play more music. Go on more walks when I can. Play with my kids. And learn how to laugh on my own again.

Sunday, November 15, 2020

Wonder of wonder.... miracle of miracles.


It was a week ago today, I was in the kitchen cooking breakfast for my kids. "Pigs in a Blanket" - I'd put Banquet Sausages in some crescent roll dough and bake 'em up. The boy loves to dip them in syrup. It's a treat for a breakfast, we were having a nice morning together after a day the park together the day before; so when the phone rang and I saw it was the transplant clinic, I thought it was just them calling to schedule a couple of exams I needed for my yearly checkup - an EKG and Chest X-Ray.  I'd been in recently for an ultrasound, but still needed those few tests to round out my yearly maintenance on the transplant list. But my coordinator on the phone asked me what I was doing.
"Oh, you know, making breakfast for the kids, getting ready for dialysis. Why, what's up?"
"A kidney has become available, and we need you to come up and give a current blood draw for it. We need to see if you're still a match, because you're number one in line for this." 
It was like the world stopped for a moment. I could hear the blood rush in my ear, the sound of my kids playing at the kitchen table suddenly became an octave and decibel lower.
"Uh, okay, I'll get someone to watch the kids and I'll be right up."
"See you soon, Steven."
I hung up my phone, and tried to calm myself. This had happened before. Was probably routine. Stunned, I called my parents to see if they could watch the kids, and I went up. I knew I was highly sensitized after two previous transplants and blood transfusions this summer, so I didn't hold out much hope.  I quickly drove up to the hospital, parked, and walked inside the both newly renovated and newly placed COVID-19 protocols. I'd been walking in the doors of this hospital almost 18 years.  My first transplant there was in November of 2003.  I checked in, went up to the lab and they drew my blood. I went home, changed, hugged the kids goodbye, as they were going to their Mom's that afternoon, and I went to dialysis.
I sat for hours in the chair, trying not to think too much about it. It was hard, but dialysis is always hard. At the end of treatment, I still hadn't heard, and they took the needles out and wrapped up my arm when my phone rang. It was the clinic. Everyone there knew I had been called that morning - I could see the staff begin to edge in toward me. My coordinator asked what I was doing. I told her "finishing up dialysis" and she said "Well, we'd like you to come up, because the kidney is a match and we're offering it to you. Can you be here in an hour?" 
"Yeah," I said aloud, "I can be there."
The staff smiled and began to bubble. I hung up the phone.
"It's a match. I'm getting a kidney tonight," I said.
The staff erupted into cheers, and suddenly I was surrounded by a massive hug from everyone I'd come to know at my dialysis center. I walked outside in a daze, got in my car, made a Facebook live video, and went home. My parents dropped me off at the hospital a little bit later. 12 hours later... I was having a kidney transplant.
It's still unreal to me, and I really cannot stress how thankful I am - the support I've had over the years and again especially this last week... I don't know if I'll ever be able to adequately describe how I feel. But I'm so grateful for this new lease on life and I can't wait to keep going and keep getting better. Thank you so much.  It's been one week since I woke up with a working kidney. I'm healing well. Things are working. And I feel so much better all the time. It's amazing, the difference between life on dialysis and life with a transplant.

2020 was very, very hard for me. I lost so much.  But I finally feel like I have a fighting chance to gain something back.  I am looking forward to my new life.