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.

Thursday, September 30, 2021

Where the Wild Things Are

 Many years back, filmmaker Spike Jonze made an adaptation of Maurice Sendak's "Where the Wild Things Are".  "Wild Things" is, of course, a beloved children's book, with amazing illustrations that tell the story of Max, a little boy dressed in a wolf costume who is sent to bed without dinner for acting "wild" and misbehaving.  We were given several copies of this book by lovely friends and family who were celebrating the birth of our children years ago - and I have read it to them before bed countless times since.  I read the book many times as a child - it was a bridge and a door, connecting the world of my childhood to the world of my children's childhood.  It was beautiful to experience. I digress, though.

I watched the film version again recently - the first time I saw it was in the movie theaters, along with someone who I cared about very much.  We were both on that precipice between youth and adulthood - people often think that happens so much earlier in life, but the weird truth is that it's different for everyone.  For me, though, it was later in life than some.  I had been through a lot in my young adulthood - some traditional things too a back seat as I tried to navigate my own survival with life as an ESRD patient.  But with this film... I went in expecting to see a pretty harmless adaptation of a children's book, and what I got was an amazingly beautiful and esoteric vision that took me, the viewer, on a trip through childhood frivolity, the power of dreams, the realities of growing up, friendship, love and loss.  The movie is much deeper than many probably expected. As I recall, it did not fare well at the box office.

But I enjoyed watching it years later - I remember after the film, musing on many aspects of my life at the time but I knew I was ready to take up the mantle of many "grown up" things I had put aside. I wasn't just ready; I embraced them.  I welcomed them, and I began to feel a purpose in my life that I had never had before.  I spent the ensuing years trying to fulfill them the best I could, and do the best I could for the people in my life.  But it was then that I was committed to putting away certain aspects of life and push forward with better goals.  I am still chasing those, though the method of their mechanism is very different than I envisioned in October of 2009 - I am still pursuing them.  These aims and goals make me feel fulfilled as a human being, and though I don't always succeed every day at them, I still do them and I feel good, even when I fail.

Sunday, September 26, 2021

Highway Song (4 of 12)

     Ryan sat on the bench in the park, playing his guitar to the river the better part of an hour.  Of course, after some random noodling on chords, a flood of old favorites came to his mind and he followed that musing down the paths it took him.  He found himself playing some old Kingston Trio songs - music he’d heard from well loved and well-worn cassettes in his parents collection growing up.  His parents had loved music, and had a nice collection of cassette tapes they’d bought over the years.  There were some old vinyl records at his house growing up, but that format had been mostly abandoned by the time he’d grown up enough to pay attention to music.  They still lived in an old drawer, and he’d occasionally pour over the large album covers - admiring the art that accompanied massive albums of music the spoke the stories and songs of a generation born of “The Greatest Generation”. Of course, he’d muse on the things his parents generation did, and what they didn’t… and what they ultimately did.  It was a vast, long, wormhole that was still affecting people who were living today - including the aging boomers, many of whom were rapidly approaching the ages when they found them relegated to the corners of life - small rooms in the homes of family they once held as babes and raised, or worse yet, tucked away in some cold, uncaring medical facility, waiting die, being attended to by minimum wage workers who were doing the bare minimum to get by and not get yelled at by people making slightly more money than them.  People who held this small authority over their head like a large baton, while they themselves were bullied by people above them making just slightly more, and wielding more imaginary power than they really had. In truth, they were just lorded over by the people who owned facilities like this - greedy, rich, money grabbers who barely worked themselves, and encouraged their low paid workers to cut even more corners to the bone in order to line their own pockets.  They did all this while convincing these low paid workers that they were “blessed and lucky” to even have a job.  All while caring for the children of “The Greatest Generation”... and knowing that many of that same great generation already experienced this end in life, and had died undignified deaths in sterile, cold, nursing homes, bereft of the love and family they once had.

    This tangent of thought made Ry shudder, and he stopped playing the guitar for a moment.  The sun soared over the sky during the afternoon, and was steadily making its celestial jog towards the western horizon.  Ry wanted to walk around town a bit more, and explore some things before nightfall.  He figured he’d come back here to try and find an inconspicuous place to bed-down for the night.  He liked this place - the whole town had a slow and comfortable vibe.

    If I could he thought I’d live in a place like this forever.

Tuesday, September 21, 2021


 I have to get frank on here - my labs have not been good.  I had a biopsy back in Janurary that showed that my most recent transplant had damage - and they determined that it was from the donor, and not from me or anything I or my body's systems had done. The kidney just wasn't as viable as they originally thought.   I've since had another biopsy that showed the same results as the previous one - and my labs have been in slow decline ever since.

I currently have about 22% function.  I don't feel great most of the time - but this is really nothing new for me.  I've learned to live and function feeling that way - if the average person felt how I feel every day, they would not be able to function well at all. In fact, they'd probably think that they were very, very sick.  But it's normal for me, and I do the best I can with it.

Right now, my function will keep me off dialysis - which is amazing.  But I am bracing myself for the fact that there will be an inevitable return to dialysis for me, probably sooner than I would like. Or worse.  I also don't know just how long I might last on dialysis again.  I was in rough shape last time.  I just don't know if I can survive much more of this.  I have fought very hard for a long time.  Almost 19 years now of living with End Stage Renal Disease.  I can't afford to do the normal human thing and pretend death isn't a reality for me.  It breaks every inch of my heart to think I might have to leave this life sooner than I'd like.  At one point in my life, I was more sad for myself - I thought of everything I'd never get to do. Now, it's funny - I am sated with the things life has to offer me.  I have not lived some amazing life of crazy success and glory - but I have lived a good life. I have gotten to live a life of love, passion and creativity.  I have pursued interests that have made me happy and fulfilled - I have had things I've written published internationally.  I have created, composed and recorded music that was a true expression of my heart and expressed through my love of musical composition. I have created video games that have been sold internationally, and there are fans of my work all over the globe.  I've befriended a veritable army of people all over this planet - and they're all just such amazing people.  I mean, when I think about the friends I have amassed over the years, I get a little choked up.  A lot of amazing and good-hearted people thought this stupid kid from Upstate New York was worth befriending. I knew the love of an amazing person, with whom I shared many amazing adventures, laughter, tears and a journey through life together. I have two absolutely wonderful children, whose glory shines so bright, and who have captured my heart and imagination like nothing else in this whole experience of life has.  I have lived a good life.  It's all more than I ever could have hoped for. I couldn't have predicted this life for me when I was young, and every day since Jan 1st 2003 has been an absolute gift.  Even the hard times - the heartache, the sadness, the depression, the setbacks, the failures... it's all part of the experience.  And it's all mine. For better or for worse, it's all mine. 

Right now, as I've said, I just want to hold on as long as I can. My children just started school.  I want to be around for them as long as I can.  I don't want to be a little spot, a dot in their memory.  I want them to look back, and think lovingly and fondly of their father.  I want the thought of me to be one that inspires love, comfort, support and inspiration.  I don't want to be something they recall as a long distant part of their past.  I am so upset that I will have to give them this legacy in life - being a chronically ill father makes me so upset in that I have saddled them with something even before they were born. They love me so much; I am so lucky.  I try not to scare them too bad, but I also try to be as open and honest about my life and condition as I can.  I don't want them to grow up, look back and get mad that I lied to them about things, or how I was.  But I also want to protect them and not scare them.  It's a serious balancing act that I am still trying to manage, refine and enact.  I hope I am doing well there.

So, right now, again, I feel like I am coasting through life.  Drifting on this strange breeze caught between life and death, just trying to stay aloft - all while still trying to live life the best I can, experience the most I can, and enjoy things the most I can.  The last five years of my life have been the hardest in particular - I have survived things I was sure would kill me. But I am still here, and I am still going. Perhaps I still have strength I do not even know about.  All I know is I am going to try my best to keep living a life of quality.  Thanks for taking the journey with me, in some way.

Tuesday, September 14, 2021

Highway Song (3 of 12)

 Ry strode up the street, and peered into the large picture window in front of the pharmacy. It was a real "old-school" place, with the name of the pharmacy painted in carefully painted script. The old venerable neon sign hung out front, above the door, it's ancient neon still shinning and proclaiming "Judge Drugs". Ry pushed the door open, and heard an old fashioned shoppers bell ring as he stepped inside. The place smelled amazing - Ry always loved finding these old, family run places and they always smelled like an odd kind of comfort.  The shelves were a mix of new products and old - he thought half the novelty toys they had in the aisle were still from the 1970s, while he did spy a few semi-new Star Wars toys.

Ry was out to pick up some bottled water, and a bottle of flavoring in a little squeeze bottle. Mio, or some brand like that.  There were some of these concentrates that had a nice collection of vitamins & minerals infused in it. He could add it to any water, and it was some nice flavor and a pop of something mildly nutritious.  He also picked up some peanut butter crackers.  Decent road fuel for a couple bucks.  He nabbed a small package of Acetaminophen and brought it all up to the counter to pay.  He mused on buying the ancient rubber ball he saw on the counter, but today wasn't a day to indulge whimsy.

The cashier smiled at him as he approached, which he was actually glad for.  Far too often in his transient life, he was greeted by derision and suspicious stares, as people are wont to do. But this young woman smiled genuinely at him as she put down the comic she was reading.

How are you doing today? she asked

Not bad at all he said cheerfully.  Thanks for asking.

My pleasure... just this? she asked, pointing to his items

Yes ma'am.  he said

Ma'am. Don't make me feel all fancy... or old. I'm sitting here reading comics, you know. she said with a smile.

I see that he said, anything good?

Oh yeah, for sure. I've been reading the mags we get in store since I was a kid. Dad runs this place now, but Grandpa ran it before him.  I've probably been reading comics here since before I could walk!

Musta been a neat place to grow up in.

It wasn't bad. It's not a huge town here, so a lot of the excitement in town centers on this place.  This place... and the Village Inn, of course.

Of course! he laughed.

She smiled back at him.  It was nice to get some normal human interaction.

Well, that'll be $7.50 total, today! she chimed.

He fished a ten dollar bill out of his billfold, and handed it to her casually.  She smiled, and placed it in the register as she counted change.  She handed him back a couple coins and a couple bills.

Well, we appreciate your business! Enjoy your time in our town!

Thank you. It's been very nice so far.

He nodded his head, and made his way out the front of the store.  He already missed the smell of the place as he walked down the street, and made his way down to the little park area next to the river.  The bridge that spanned the river carried the State Route into town - the little park down by the river had some small, but nicely kept flower gardens, a couple of benches, and a walking path that went under the bridge.  He spied a nice spot under the bridge he could camp out at. Probably a popular spot, he'd have to be careful.  But he sat on the bench, and took out his guitar to play for a minute.  The sound of the river flowing by was strong - a real pulse heartbeat of a flow, and he played some chords to it.  He started with some major chords, feeling bright, but as the current pulled him along, he was also finding a minor theme in it.  He loved to find himself in moments like this, inspired by his environment, and letting the music just go along. 

Monday, September 6, 2021

Highway Song (2 of 12)

     They rode in silence together down the old state route.  The driver had pulled over his old 1979 Ford F-150 and picked up the hitchhiker as he stood on a wet patch of gravel by the road.  The hitcher had thrown his guitar case in the bed of the truck, and noted how delightfully avocado green one of the truck's dual colors were.  It was a hallmark of that era - this car was in great condition.  Someone had taken care of it - or maybe never ever drove it thought the hitchhiker.  The cab was cool, and smelled faintly of old Marlboros.  The driver was a heavier set man, probably in his mid fifties, blue plaid flannel shirt over an old t-shirt.  He wore an old Mack Truck baseball cap, and nodded politely to the hitchhiker.

Where you going? he asked the hitcher.

Just down the road, to the next town.

No problem, that's only about 15 minutes down this way.

Thank you, sir.

The banality of the exchange brought both the hitcher and the driver a sense of relief.  The driver took a chance on this guy - and the hitcher took a chance on the driver.  But all that passed between them in the ensuing minutes was a few songs on the radio.  It was an old classic rock station, and during the time they shared, Bob Seger asked to be Rolled Away and John Sebastian sang about the summer in the city. They were just getting into Love Her Madly by the Doors when the truck pulled into town.

The old state route was the main street of this old town - it sprang up in the North County, like so many other little places, as a home for the workers that came to mine iron ore or to cut down the vast supplies of lumber that would help build structures all over the state.  But, as industries do, they dry up and move on, leaving people where they are and cities and towns to deteriorate and shrink.  Calbot was no exception; main street had a few nice old buildings, but the stores that were once in them sat unused.  There was still the old Village Inn, and a Pharmacy on the strip.  An old bakery still cranked out doughnuts everyday, or at least it claimed to on the sign.  There was an old IGA supermarket down the way a bit.  A few people walking the streets. An old abandoned gas station up at the corner.  Your typical North Country town.  Nice.  Quiet.  Near the river - source of life and commerce.  The Hitcher nodded at the driver as he alighted from the vehicle and grabbed his guitar case.

Thank you very much, sir.  said the hitcher.

John said the driver. My name's John, I'm sorry, I never introduced myself! We just got on well in the silence and I just kept it that way!

No worries said the hitcher, I enjoyed it too.

You got a name?

The hitcher thought for a moment.  It had been a while since he used his name. People really never asked him.  It was kind of odd, he thought, how rarely some people will ask a transient their name.

Yeah he replied with a wry smile It's Ryan. Everyone just calls me 'Ry' though.

Safe travels to you, Ry. You take care now.

The door to the truck closed, and John drove off down the old State Route, off toward the old horizon and out of Ry's life.

Sunday, September 5, 2021

Highway Song (1 of 12)

 The hitchhiker stood on a wet patch of gravel next to the side of the road.  The morning clouds had given up a little rain earlier; he was glad to have spent that little shower underneath the old car park he'd slept in the night before. The roof was standing and sturdy on the old car port, but the house it once belonged to was not in such good shape.  The home, long since abandoned, had caved in on itself long ago, he estimated.  The weeds and growth around the old property suggested so - but the car port looked warm, dry and relatively safe - the old house was set back from the old highway a ways, and with no one to maintain the property, the old shrubbery out front obscured most of the places existence. He'd looked through the house briefly - noting the old newspapers and magazines from the late 70s to the mid 80s.  The house had been deserted for probably over 35 years.  It was a shame no one seemed to want this old property, he thought.  It was kind of out of the way.  It was the lone house for miles in a long stretch of old highway, built long ago before America's super highways had made these old state routes less traveled.  Not that the road was abandoned, far from it - but it was less traveled than it once was.  In fact, the whole roadway was littered with old abandoned hotels and motels, that were probably once full of travelers and vacationers in mid-century America. Most of those places, though the business was given up, still had visitors... more transients.  Much like himself, but yet not like me he thought.  Sadly, many were junkies - chasing the dragon with old dirty needles, or succumbing to the latest drug plaguing the lower classes - methamphetamine.  The hitchhiker steered clear of that stuff.  He traveled light - a small backpack with a blanket, some old clothes inside, whatever snacks or food he managed to get, and his old guitar. It was a beat up Takamine someone in Toledo had traded to him for a pocket knife.  He was glad to have an instrument again - it made a nice traveling partner.  It also seemed to endear him more to people who might stop to give him a lift - even if he didn't play, something about it made others more at ease.  He hoped it did.  He didn't want to hurt anyone. He just wanted to keep going.  Where? Somewhere

The patch of gravel next to the road was about 2 miles down from the car port he'd slept it; he started walking down the road and waited to see where he'd get. He knew there was a little town about 20 miles up ahead.  He'd stop in there, and see what he could find.  A pharmacy, maybe. Hopefully a little restaurant - he'd managed to save a little money from the last job he grabbed at the previous town he shuffled into.  He helped a local road crew pave some roads for a few days, and at the end, he gave back the orange jacket they'd handed him, and handed him a wad of cash. A nod, a hand shake, and he went back on the road.

He didn't often think of where he'd come from - he thought often of where he'd been... but that old home he was once from? He hadn't been there in years.  Didn't have a reason to - everyone was gone.  When you're orphaned into the world, and your siblings won't claim to know you - you've got to find your own path. Which is just what he did. So he here was on the road - in a state he was not from, but rapidly learning to love as his own.  He felt a kinship with this place as of late - and something made him think that this would be his home.  Somewhere around her.  But for now, he heard a car coming down the old highway, and he stuck his thumb out gently as those who ply in his trade do.  The sound of wheels slowing down reached his ear, and soon, an automobile had stopped next to his gravel patch.

Friday, September 3, 2021

On writing

 I've been maintaining a blog of some sort for almost 20 years now.  This current one I've had for a long time.  I've always enjoyed writing - putting my thoughts out on a page, and trying to organize them into something that is mildly readable and somewhat enjoyable - all while pertaining to something. A subject which I might have some insight on.  When I was younger, I had the hubris of thinking anything I thought mattered - the older I get, the more it becomes clear to me that I don't know shit about shit, and that I am pretty much qualified to write about nothing! But I do it anyway - this blog has mainly been about me living with End Stage Renal Disease - how dialysis, transplants and the disease dovetail with the human experience.  At the core of it all, I am just an exceedingly typical and average person trying to live a painfully normal and average life.  It does not always work out that way, but that's honestly what I strive for. So that's what I write about.

I often see the amount of projects other writers participate in, and their prodigious output of writing - be it essays, non-fiction, fiction... anything, and I often wonder how people have that much to say.  I just feel like I do not have much to say any more.  Anything that's really worth anything.  I've had a lot of my passion and confidence sucked out of my soul over the past few years, and I am oddly okay with that at this point in time. I've just come to accept that my enthusiasm and interest in living and doing things really meant jack shit in my life. That and a bag of chips just got me an empty wrapper. I don't know if I will ever rediscover that feeling - the need and want to create. I had a big dose of that for most of my life. But it's just gone right now, and honestly, I feel like I'll be dead before it ever comes along again.  Which is okay, really - most people never even feel the spark like I did.  I was happy for a lot of years, and even though success didn't follow in the way I'd hoped - I am successful in that I did a great many things I always wanted to and never thought I would.  I did not make much money along the way, but I did genuinely garner a lot of friendships.  Those are really worth something in the end.  I always just feel like I am a lodestone as a friend - always in need, and always taking.  When I have the opportunity to give, I try to do it as much and as often as I can... I owe so much to so many people. And I'm not just talking monetary means - people have gifted me their time. Their love. Their souls.  I try my best to give it all back when I can, but I know some friends get neglected.  There are people I have lost along the way, and it hurts when I think of them.  I have never forgotten them, but alas, my time and priorities were relegated elsewhere and my relationships suffered. My resources are limited, ever so much more than people might realize.  When I say I'm tired... I'm tired. My tired is probably more exhausted than most normal people could ever comprehend. And I am this way ALL the time. And it gets worse every year.

I just got more labs drawn yesterday, and results.  It does not look good for this kidney.  There was damage to it from the donor, damage that wasn't seen until it was in me. My function is terrible. My GFR is awful. I am severely anemic.  Transplants are not guaranteed to work - and sometimes there are complications beyond your control or fault.  I do not know how long this will last. I do not think it will improve or get better - I'm being optimistic when I say I do not think. Because it will not get better. There's no way this organ regenerates or repairs itself. It's only destined to fall apart.  And this is my third one. I do not think I will be able to get another one.  Though the record is something like 7 transplants.  I just don't think that's in my cards. And I don't know how long I'll survive on dialysis if I have to go back. If it was just me in this, I'd be more okay.  I'm tired. I've been fighting this for 18 years. I've lived a good life. I've done a lot of great things.  If this is my last stand, I'd be okay with it. But I am not alone. I have two little people in my life now who rely on me so much. And I rely on them - I'd be lost without my kids.  So, yeah, I don't wanna go and leave them just yet.  That hurts. The thought of them having to endure my death hurts more than anything I've ever experienced.  I hate that this is most likely something I am going to leave them with. No matter when I pass...  so I try not to think about it too much.  But I just don't know about my future.  I put them on a school bus for the first time ever next week.  I am glad I made it here.  I hope I can go a little further.