A well needed update…

I know it’s been a while since I have posted an update here. It has been a crazy 8 months since I had my Laminectomy surgery, and sometimes it’s hard to look back at everything that has happened and that I have endured… But it’s the truth that I have survived and I think that’s probably the most important thing right now.

I’m going a little stir crazy after seven months of being in a wheelchair. I gotta confess that recovering from spinal surgery and learning to walk again has been really hard. I have put my full effort into it, and the only thing that is going to make things better is time.

But my autonomy and free wheeling nature has had to be suppressed in order for me to try and heal and recover. I have been walking more with a walker, but progress is still slow. My right leg and foot still have numbness issues and it’s hard to feel them sometimes.  Needless to say, because of that I haven’t been able to drive my car in 10 months, and it’s kind of crazy how isolated that makes you feel. I spent the summer in physical therapy (and dialysis on the other days!)instead of just jumping in my car and driving off to some destination, finding an old diner, hiking in the woods or dropping in at my favorite music store and playing a few guitars. I miss just getting in my car and going somewhere and finding myself someplace that I hadn’t been before. My road trips have been my solace the past six years - because I’ve had a lot of time alone to myself, getting in my car, putting on my music really loud and just driving has been very relaxing to me when I was trying to deal with the stresses of my life. I didn’t get to do that at all this summer… and of course, the morbid part of me chided myself “You don’t know how many more summers you might have!” so this one feels like a great waste. But when I look objectively, it wasn’t a waste of time because I really worked hard to gain some mobility back. The fact that I can walk around pretty easy with a walker right now is really comforting, especially because the doctors had warned me that I may never walk again back in February.

And now winter is approaching - and I find my body so much less tolerant of the cold than when I was younger. I was out this morning getting my kids on the bus and it was 38°F/3°C and even with a warm coat on, my skin literally hurt from the cold. It’s going to be a tough winter.

I can only keep on keeping on, and hope that things keep improving and someday I will be able to walk on my own and do things like drive myself again. I suppose there are alternatives if things remain the same but getting adaptive controls for my car is an expense I just can’t afford right now. As always with chronically ill disabled folks, money is tight. I can’t help but have a small pain of jealousy when I see some of my peers going off on fun family vacations together, doing things that I would love to be able to do with my children. And I see their successful careers and I wish that I had one myself. So to say that I am beyond grateful for the help of my parents this year would be selling their efforts short. Not only were they around to always help out with anything I needed with the kids, They lived with me for two months post surgery so that I would have the help around the house that I needed. And when I came home from the rehab rehabilitation hospital, I could barely get out of bed myself, Let alone stand or even think about using a walker. I had to get into a device that we purchased called a sit to stand - And this allowed me to transfer myself to a wheelchair or be able to go to the bathroom and lower myself onto a toilet seat. And then when I had gained more mobility on my own enough to be More self-sufficient, They finally moved back home But they still came over every day to help out with the little things - laundry. Watching the kids while I was a Dialysis. Any little house repairs that need to be done. Also They shoulder the financial burden of getting a ramp installed in the front of my house for my wheelchair, And they had a new adaptive bathroom/shower installed so that I would be able to use my bathing facilities safely. If anybody out there ever wants to bestow a reward or gift for the most amazing MVPs of 2026, I nominate my parents. I know it wasn’t easy, but they gave so much of themselves to me and my kids this year. And I have to admit there were some really nice times that we all got to hang out with each and I enjoyed being close with them for the time. In addition to everything they Immediately post surgery, They did a lot of other amazing things for me and the kids this summer - Including making their camp in the Adirondacks accessible for me! My dad built several small ramps around his property, And on the Fourth of July weekend, we were able to go up and I was able to be in my favorite place in the world - nestled among the trees, the sound of the stream the background noise to my harmonious happiness. They also packed us all in the mini-van, and along with my brother & his family, we went to Enchanted Forest Water Safari! A waterpark in the Adirondacks and a really neat place that I have been going to since I was a child. I really had a blast that day and I was so happy that they put so much of themselves out there to make that happen. All things considered, what could have been an absolutely terrible summer had it’s amazing bright points.

Oddly, I actually have to say that I’m thankful that I have to go to Dialysis every Monday, Wednesday and Friday because it gets me out of the house! I have arranged medical Transport that picks me up and brings me. I get there an hour early so I usually grab a coffee and chill out before treatment. I enjoy my chats with Anne who runs the coffee stand/cafe and some of the other regulars who are in the building every day. Some days, my friend, Mike, Who is an avid record collector, and one of the cohosts of the podcast I engineer (The Wax Museum with Ronnie Dark! On YouTube!), Works in the building where I do dialysis and occasionally we catch up and have some coffee before I go into treatment. 

And that’s my social life right now. But yeah, it’s been a really hard seven months. I’ve been doing it, though. And I gotta hope that there’s a light at the end of this tunnel. Or else I’ll fall into despair and that would just be the end of me. I have my moments where I am incredibly overwhelmed by the challenges in front of me - And I have a lot of sadness in my soul about a lot of things. But I also have a lot of joy. I love being a Dad, And I love watching my kids grow and thrive. They’re getting so big now. They are their own little people and I am here for it and I love it and I’m just trying my best to be the best father that I can to them. That brings me so much joy that I really can’t put it into words. It is the light that shines my way and the fuel in my fire, and I’m so lucky that I have them in my life.

So I don’t know who reads this anymore if anybody does, But this is a little updating to my life. I feel like this was a little bit rambling, but I have a lot on my mind and sometimes it’s hard to organize my thoughts. Dialysis brain is real and sometimes my memory is fuzzy and I’m not as sharp as I want to be. But I am still me inside all of this mess. The Kidney Boy rapidly approaching the big 5-0 and amazed that I’m still here. The title of this blog cracks me up, considering that I am just a few years away from being half a century old. When I started all this Kidney nonsense, I was the Kidney boy. And once upon a time, that was how I was affectionately referred to by someone. But here I am decades later… And here we all are reading my words. Thank you for all your support, dear readers. Here is to wishing that your 2027 is amazing and I hope that mine is better too.

~Steve 

Hospitalized… yet again.

 Almost 4 weeks ago now on February 20 I took another ride to the hospital in an ambulance. This time it was because when I came home from Dialysis, I tried to get out of the car and walk to the front door of my home and enter, But even using my walker, I could not lift either of my feet to get in the front door. My left leg had become lame a few months before and now my right leg began to become lame. I knew something had to be done. So the kids went off to be with their mom, And I spent the weekend in the hospital. On Monday, their spinal surgeon determined that I Needed surgery On my thoracic spine - t10-13, That it had become too narrow and compressed the nerves, and that was contributing to my legs not working. I had to get a laminectomy and on Tuesday night I had the procedure. They told me it would take some time and rehab to see results. I transferred to a rehab facility in another hospital that way I could do rehab and dialysis at the same place. I’ve been doing occupational therapy and physical therapy for the last three weeks and sadly, I seem to have gained no ground. My left leg is unresponsive to my commands, and my right leg works from my knee below, but from my waist to my knee is weak and will not respond to my commands. It’s a dire Time in my life. Nothing seems to be working right. I can’t even come up with any kind of flowery language too describe my experiences, right now. I feel like this blog entry isn’t my normal kind of thing but right now I’m in so much pain and my legs don’t work, I’ve been away from home for a month, And I miss my kids dearly. My children are the one thing in this world that keep me going. And being away from them, rips my heart out. I’m losing all hope. I think this is the end for me. I will spend the rest of my days as a paraplegic on Dialysis. The life I once knew is gone. I’ve tried so hard for so many years. But every time there seems, I reach a decent place I get thrown down into the pit of hell once again. I don’t know if I will ever walk again. My chances of getting another kidney transplant Are slim. I fear I may have lost this fight. There’s only so much a man can go through and come back from. I fought a good fight and I fought hard. But the forces of this universe Me down and destroy destroyed are too powerful. I really wanna thank everyone. Who’s ever read this, And those who have followed me over the years. I don’t know what my future looks like, But it doesn’t look good. There’s too much to overcome. I wish all of you the best - And I wish you, happiness and health. I wish you long and peaceful lives. My time on this earth Has seen some really amazing highs and some really devastating lows. I’ve had almost 48 years on this planet and I have spent 23 Of those dealing with the consequences of end stage renal disease. It’s almost half my life. Thank you for taking this ride with me. This will probably be my last blog entry for a long time, If ever. I hope that some parts of it may have helped you, Some parts of it may have entertained you, And maybe you learned a couple Things along the way. I know I did. I’m going to continue my fight the best I can, but being honest it doesn’t look good from here. Thank you. Hail and farewell. 

~Steve

Once the kidneyboy - forever a KidneyDad 

MRI, spine and such

 I’ve got an MRI coming up on the 30th; I was supposed to have one on the 7th, but when I showed up at the center, it turns out that it was far too narrow for me… my shoulders were practically touching the sides of the bore, so they rescheduled me for a different location that has a larger bore and an open MRI… I have had them before in the past, and I dealt with the mild claustrophobia, but that one was too much. I hope this next one isn’t too bad. They need to take a look at my back and Spine and see how much my herniation’s at L4-L5-S1 have deteriorated. And maybe I can get some help & relief. My mobility is seriously affected now - I am having a lot of difficulty getting around and I’m in a lot of pain all the time. Trying to get these things taken care of is always such a runaround too, but hopefully in time it can be taken care of. This is one of those moments where I tell everyone to cherish their good health and mobility… when all of a sudden is gone and everything changes, it can be a real upheaval to your life. For me, you add that in with everything else that I have to deal with and… it definitely takes a toll on you. But baby steps for now and this MRI is definitely one of them. Keep your fingers crossed for me. 

Taking care of my back and getting back on the transplant lists are my goals for 2026. It’s frustrating that things take so much time but if I can improve my mobility and get another kidney transplant, I may yet catch my third wind in this life!!! Again I wanna thank everybody who follows me and helps out - there are so many people out there that do me favors, and have been generous and donating to things like my GoFundMe. It is really kept me going over the years and I am lucky that I have such amazing people in my circle of life.

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.

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. 

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. 

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

GoFundMe & other Updates

 If you didn’t know, I have had a gofundme that my friends set up years ago; it is, I’m going, and I often post updates there. It has really helped me out over the past six years and I really can’t say how thankful I am for both its help & the dedication of my friends from all around the world. They have a cheeky saying in regards to it and they’ve held benefits called “Stop Dying Steve” which makes me chuckle. Honestly, good friends have gotten me through a lot and I’m so thankful.. and lucky. 

https://gofund.me/972fd5ad

There it is if you’re curious. 

Middle of the Night thoughts

 

I fell asleep watching a movie earlier tonight, and woke up with a start not too long ago. I was dreaming that my Transplant still worked & life was relatively normal. I don’t know if I have properly expressed how devastating it is to watch an organ transplant slowly degenerate. I think because you just have to keep pushing on in life, because I have so many other obligations, I may not really have given time & space to process & mourn the loss. It’s the death of hope and any sense of normalcy… and I’m incredibly sad about it on top of everything else.

Thankful

 Recently, I read a post on social media, detailing the people we have lost from my class, and other classes near mine.  I was just glad I wasn't on that list yet - we've lost a lot of great people I went to school with... it's a sad fact of life that this happens more as we age, but I'm still sad at the losses.  Good people, good families... life is tough.  But I am glad for every day I have above ground - even the hard ones.  And there's a lot more hard days lately... but I'm still glad for them.  Each day is another opportunity to maybe do better, and each day is definitely another opportunity for me to spend time with my kids.  Anyway, just want to say thanks again to everyone who makes my time here worth living.