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, July 21, 2025

Harvest Moon

 I’m 14 years old. I’ve been playing guitar for a few years, but I was struggling to get better. I played my guitar any chance I could get, but my favorite place to sit and play was up at my family’s camp in the Adirondacks. I used to sit on the concrete porch of the old hunting camp - We called it The Miller Camp, named for the family who originally built the old farmhouse back in the late 1890s. In the summertime that old concrete porch was a nice place to sit outside and play - There would be all kinds of people coming and going, and someone would stop to listen to me play. One of the members of the club, Rick, played guitar too and I used to look forward to seeing him when we would go up. I never knew when he was going to get up so it was always a treat when I saw him. He was one of my early guitar mentors - A few years earlier he had taught me the first song that I really knew, Horse With No Name by America. The song really only feature two easy chords that you could play with just your first two fingers on your left hand. E minor and D6/9/F# - I know the second chord sounds kind of big, but I didn’t even know the name of it at the time. It was just a kind of D chord to me. Anyway, I digress; I played that song so much, Just trying to get the rhythm and inflection right. But this summer when I saw Rick, He taught me a new song - And the first song I ever learned in what is known as drop D tuning. Rick was a big Neil Young fan and he had just released a new Album, “Harvest Moon”. Rick showed me how to play the title song, and after some learning and jamming, I began to play that haunting song. I remember thinking of the time that I’ve never heard anything so beautiful. 

I still play that song to this day, And every time I think of Rick. But I also think about everything that I’ve been through in those over 30 years and how much more pertinent the content of that song has become to me. Music that travels with you from boyhood to adulthood has a real special place in the heart. Earlier this evening, I was feeling a bit down and alone. I don’t play my guitar much these days because the neuropathy in my left hand has gotten very bad and it becomes difficult to play sometimes. But I picked up my guitar and I tuned my low E string down to a D and I began to softly play that song. Suddenly, I didn’t feel so alone, and I felt all the years of joy that music had brought me stir inside my old heart. And for a second, I felt like I was sitting on that old porch again - a young man with his whole life in front of him, strumming beautiful chords to a song that a wonderful mentor taught me. I’m so glad my life has been full of these little beautiful moments. And as I stared up at the moon this evening, I realized how lucky I have been in so many ways.

Sunday, June 22, 2025

Circling the Drain

 Lately I've begun to feel like I am circling the drain.  The end has always loomed over me large the last 22 years but more and more I get this awful sense that my time is nigh.  I hate it. I'm not ready.  I have more to do, and I need to be here for my kids.  But I'm in so much pain every day. It's becoming harder to function. All my creativity is sapped. I feel like i have no more stories to tell. My can't play my guitar. There's only pain.  My body is wracked with it. Chronic pain is consuming and it's biting the last bits off now.  I only feel semi normal when I take pain medication, and I don't like to do that.  It's becoming almost untenable.  I hope I can fight through this and pull myself up again, but... I dunno.  It's been a long fight. I'm tired. I'm scared. I'm alone. It's hard. Writing these words out makes me feel better because at least I'm acknowledging these thoughts so I can deal with it.  My back hurts.  My feet hurt. My knees hurt. My neck hurts. My arms hurt. My fingers lose more feeling everyday - no normal sensations, only pain. 

Wednesday, June 11, 2025

June comes around again

 It’s the middle of the night and it’s a warm night, not a hot one, but still, I have not yet fallen asleep and it’s almost 2 in the morning. It’s this time of night my mind seems to run wild - Sometimes it feels as if my mind is free at this time. Free from the restraints that my failing body keeps it caged during the day. In my youth, I always used to think of this time as my most creative. I did a lot of my creating at this time - be it writing stories or essays or composing music, This time of night has always seemed to feed into the river of creativity. 

I’m not really feeling creative right now and I haven’t been feeling creative for a long time. I haven’t written anything that I have been in love with in a long time. It has become difficult and almost impossible to play guitar very much; The neuropathy in my left hand has rendered it almost completely useless. I played a little guitar up at camp this last weekend and I got to a point where I could barely form an E major chord. Betrayed by my own body. I’m thinking that it has to do with some pinched nerves in my neck and spine from all the spine issues I have. I’m still holding out hope that I can get that taken care of and that maybe I can at least get that part of my life back. Sometimes I feel like I’m whittling down to nothing. Like maybe I am going in to my back nine of life. Maybe this is my ramp out. And I get to slowly lose everything that I used to love about life. It’s not a comforting thought, and I can’t succumb to that. I have to think that if I fight, And I work towards it I can regain some of these things. But the fight has gotten so much harder, and it is hard not to become overwhelmed by a sense of despair. But I’m trying real hard not to. At least I had the good sense to type this out right now - I feel like this is one of the first big spots of writing I have done in a while. 

My body seems to fail more and more every day. I’m tired. I’m hurting all the time. And I don’t like to admit it, but I’m very lonely. I’m so lucky I have my children in my life because I don’t know if my heart would be in it if they weren’t around. They are a very big beacon of light and they are definitely what keeps me going. I know people say this kind of thing all the time, and in my case, it’s absolutely true. They are what keeps the blood pumping through my heart. I hope I can find some joy in life again outside of that too, though because that’s important. I would like to be a well-rounded human being And I have to remember to keep trying to do things that I love and things that make me feel alive. 

Wednesday, April 2, 2025

Spinal Situations



 So yesterday I got an epidural & steroid injection in my spine to help relieve pain & pressure along my very herniated L4-L5-S1. It had gotten really really bad to the point where I was using a walker for a while, and even had to be wheeled into Dialysis in a wheelchair because it was both so painful to walk and I was so anemic that I was exhausted taking a few steps. So I was rather excited to have this procedure done, and to see what kind of results it would give me. I may still need surgery in the future, but for now I wanted to see what this would do. I have had it done in the past with varying degrees of success ranging from very helpful to not so much. It all seems to depend on where the doctor decides to place the needle and we had a good conversation beforehand about where we should do it this time and I think that we chose a good spot. It seemed to go very well and even with sedation, man, did I feel it when the needles went in. But after that initial minor discomfort, I have slowly started to feel better over the course of the last day. I didn’t sleep very well last night, but that is to be expected after an injection like that. However, I did notice that all the times I got up and down and walked through my house in the middle of the night, I was already walking better and significantly less pain than I have been. So I am looking forward to seeing my progress over the next week and maybe I could actually get back to being able to walk like a somewhat normal human being. Right now walking anywhere leaves me a tremendous amount of pain, and you grit your teeth & bear it, but it is nice at the moment not have so much pain. I’m actually looking forward to walking into Dialysis today. I’m using a cane for balance because nobody wants this gigantic body of mine falling anywhere but baby steps towards a more normal life. Whatever that means.

I’ve also attached Venmo info to those who might wanna help a bit. Medical bills still coming in and while I have coverage, it doesn’t cover everything. Every lil bit helps. Thank you. 

Venmo:@StevenA519

https://venmo.com/u/StevenA519