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, April 7, 2016


4/7/2016

I literally almost died during the colonoscopy.  No joke; I don't talk about it much anymore, and I don't remember talking about it much at the time - but the anesthesiologist really messed up during this.  I was on dialysis, and given a fluid expander, which is a no-no.  My lungs filled with blood, my BP dropped, and I was choking. If Jordan​ hadn't been in the room monitoring the process, I'd have died in a freak accident in North Medical Center.  Her quick thinking and stepping to action saved my life.  I woke up coughing, feeling groggy, and a bit stuffed up.  Turns out I was coughing massive amounts of blood all over the room and walls.  The nurse who worked there had the audacity to say, "Please stop coughing blood all over the walls, sir!" as if I was doing it purposefully and maliciously.  Also, later, I found out the doctor found a mass and at the time said, "Oh, there's the cancer."  I can only imagine what ran through my wife's mind.

I've, uh, been through some things in the past 13 years that I don't often recall or talk about much.  You just file some of these things away, or else you'd go crazy thinking about them. All I know is that I would be literally dead if it wasn't for my wife, and that's not hyperbole.  Her picture's gone around the world for such a silly thing, but not many people know what a real hero she is.  Reading this "memory" reminded me of all that, again.  I've been lucky and fortunate in so many ways in my life, in spite of what some people might deem a raw deal.  I wouldn't change a thing I've experienced.


~Steve

Saturday, March 26, 2016

DInner With Pawpaw

So, recently, a photo went viral on the internet - no, I'm not talking about the one featuring my wife. (Angry Splash Mountain Lady) but the one of a grandfather in Oklahoma who made 12 burgers for his 6 grandkids.  Only one showed up, tweeted a picture and the internet went crazy; his grandkids eventually not only came by to spend some time, but they threw a big barbecue and hundreds of folks showed up!  It was a really sweet thing, and one of those times I remember the internet can be really great.

It got me thinking, too, of my grandfather.  My father's Dad - he passed away in 1998, when I was 19, just short of my 20th birthday.  It was a difficult time for me - I had not been feeling well, and was having tests done to me.  Soon after, I would be diagnosed with Sleep Apnea and given a CPAP, which really helped change my life.  But I was kind of out of it when my grandfather passed - and I was very young.  Quite unaware of what a hole in my life he would leave; I took for granted that my grandparents were around.  I was lucky enough to grow up with not only my paternal grandparents in my life,  but my maternal grandparents as well.  I just took for granted that most people had two sets of grandparents.

He was a big man - a former police officer and sheriff, and he loved to read.  I remember being fascinated by his bookshelves as a child - he always had interesting tomes of literature on them. I definitely mourn his loss for our family, and for me personally - I mourn that he never got to see me as a grown man, who married and eventually had a baby son - his great-grandson.  I miss conversations we never got to have; I miss not being able to pick his brain, and learn more lessons on adulthood from him.  I have a lot of regret that I was a typical foolish teen, and perhaps even a bit disdainful of my elders.  Being young is about being silly and making mistakes, and hindsight is 20/20.  There was time, when I was young, when older and wiser people told me "Someday, you'll miss this time."  Someday came, and hit me like a ton of bricks - but then I also remembered the good times we had.  The laughs.  The smiles - I remember his face on Christmases - with all of us grandkids around.  I still see it when I close my eyes and think of him - and I'm reminded that he was happy, and full of love for his family.  And I know that.  So, even though I can't have another burger with him, he's still there, in my mind, every time I spend time with my family now.

My maternal grandfather isn't doing so well these days, either.  I'm going to have a burger with him this week, I think.  Introduce him to his great-grandson, and spend some time with him.  Life is so cruelly beautiful sometimes, and I want to remember it all - good and bad.  And still smile.

Thursday, August 20, 2015

The Old Rope Swing

I can smell the pine needles now, when I close my eyes.  It's amazing how your olfactory sense can be such a powerful memory trigger.  There's no real scent in the air in this room now, but if I think very hard, I can smell them.

I can also smell that musty, mottled and tangled old rope.  Oh yes, two large pieces of it.  Each knot of it, looking almost frayed yet amazingly strong - I can smell that rope.  It held an old slab of wood at the bottom - making a swing that you could seat yourself into on a warm summer day.  I was so small then - skinny, even.  Skinny's not something I was very much in my life, but I was then.  It's the early 80s.  Some cars still used leaded gasoline - I remember how the pumps used to smell.  We stopped at one on the way up to camp - oh so far away, nestled in the trees and hills of the Adirondack Park in New York State.  The journey used to always seem so long to me as a child - it was truly a different work we were getting away to.  We'd get on the freeway, a modern marvel (I was told; it wasn't there when my parents were my age!) and cars would scoot along at speeds designed to make travel across state so much more convenient.  Though the speed limit was capped at 55 mph due to the oil shortages of the 70s, to me - it seemed as if the green rolling hills and rock-cut streams sped by my window in hyperspace.  They were merely blurry lines when I looked at them, but each mile we passed was one more step, for me, towards the bliss of escape.

Camp - or "Up North" as we called it.  When we pulled off the main road, onto that old dirt-road, we pulled ourselves into a place out of space and time.  To my mind, when the large pines began to envelope us, and they let small rays of sunlight spray across the road in dappled patterns, we were in paradise; the world as it was, or meant to be, away from the rest of civilization.

The road winded on for miles - past a sunny stream that flowed over the rich, iron laden rocks, and old hunting camps.  The first stop for us was always an old homestead, known by the name of the family that built it: The Miller Camp.  The Millers had a farm out here once, near the turn of the 19th century to the 20th.  Now, it was a hunting camp, though well maintained and a favorite place for the families to stop and hang out at in these long summer days.  There was a massive tree out front; to me, this tree probably sprang from the center of the Earth and was just as old as it.  To my little, skinny self, that tree could have housed families.  But, instead, off of one sturdy branch hung that old swing.  The seat was such an old, grey piece of wood.  It had seen summers and winters and aged accordingly, but it still held us - we were just little children.  I was young, my brother was younger and many of my cousins were still just dreams in their young parents minds.  Now, as we're all grown, it's funny for me to think of a time when they didn't exist yet, and I ran around in shorts with white trim, and wore track socks with stripes up to my shins.  It was the early 80s, as I said, and such things were the fashion of the day.  So, I'd swing - and I'd swing till I was called away.  We'd have adventures, but that swing was always like the first greeting into that world.

That limb is long gone, now - and the tree, though still a massive and impressive specimen, looks smaller to me now.  Now that I'm older, taller, wider, more bald, more battle scarred from life.  But it remains, and I remain; we've both lost some things along the way, but we stand tall.  Neither of us has the swing anymore, but I'm quite sure that the old tree, like me, can still probably smell the old pine needles and the rope that used to hang off of it - and it can still hear the laughter and feel the love that surrounded that tree, oh so many years ago.  It does my heart well to remember these things - after all we both have been through, we remain. We remain.

Tuesday, August 4, 2015

Pieces of You

There is a bit of wisdom that says "You are not the things you own." and there really is something to be said for that.  People often have or seek these signs of status or what-have-you to help define their lives - from "designer clothes" to expensive cars or expensive appliances and electronics, people often rely on these things to help define themselves and often use them as a basis of comparison to others.  When you read or think about this, it's easy to see that's foolish.

Yet there are some simple, little things that you remember - just objects you've owned that actually do define you, or moments in your life.  It can be something small - even a pin.  For me, I had a moment today with a couple of old couches we used to have in our family room.

I say "used to" because last night, my brother-in-law and I took them outside and put them to the curb to be collected with the trash.  They were just beat up old couches, yet when I looked at their soft-microplush coverings and comfy pillows, I was reminded of getting them.

My wife and I were young; it was the summer we married.  I was on dialysis, and she was working 12 hour overnight shifts and then coming home to put me on home hemo-dialysis.  We lived in a little ranch house with my brother; we were struggling to make ends meet, and working hard just to exist, but we were stupid happy, young and in love.  We had old furniture in the house; stuff I'd had since I was a dirty bachelor.  But we had a little money from wedding gifts, and we decided we'd get some new couches for the living room.  We went to a local furniture store; a family friend worked there, and told us to come in and pick what we liked.  He'd get us his discount as a gift - so we walked into the expansive store, and just strolled the aisles - looking for something we could afford with our budget.  These little acts seem so silly, but we were so proud of ourselves for being adults - walking into a furniture store and buying something NEW for ourselves!  We looked all over the store, and found a little set - brown microfiber, with comfy pillows and white tubing/trim.  It wasn't ostentatious, but it was nice, it was comfy and it was new - AND we could buy it.  So, that was it, we paid cash for the items, signed some papers, and in a few days, he helped us get it home in my truck.  We loaded the furniture into the house, and spent the day lounging on our new couches that we bought! We couldn't believe it... those couches were with us all through dialysis; I'd often collapse on them after a session.  We cuddled and watched a lot of movies on them; had friends over for parties.  Our little puppies grew up on them, falling asleep on the cushions like little princesses.  They moved with us from the house with my brother, to our first apartment on our own and now to our first house. 

This morning, I watched the trash collectors take my couches, put them in the back of the giant garbage truck, and compress them into the rest of the trash.  It seems silly, but I got a little emotional seeing that part of our lives, our past, go that way.  But such is the way of life - sometimes silly little things become icons of your life - your joys, your struggles, your dreams. It all fades someday, and you move on.  We bought new furniture weeks ago, and while it was nice to buy new furniture, it wasn't as thrilling and as exciting as when we were younger.  I do look forward, however, to spending many a night, watching TV with our son, reading books, and getting older together - all of us.

Farewell, couches.  Thanks for serving us so well.

Friday, May 15, 2015

Being The Best You Can Be

Recently, my wife showed me an obituary for a young man who passed away at the age of 35.  Knowing he passed at such a young age was sad enough, but as I read the short biography of the life this man lived, and the achievements he accomplished in his lifetime, I felt the biggest loss was that the world at large lost such a man.

I sat at a park recently, which was very busy - and I watched the world move around me.  People scurrying back and forth, going about their lives.  Mothers holding young children's hands, fathers playing games with their kids.  Young lovers holding hands and laughing at their own inside jokes, and older couple still staring at each other with love and longing.  I saw faces of happiness, and I saw faces of defeat.  I saw frustration from some people.  I saw the everlasting smiles of some, and the permanent pain that some of us will hold for our entire lives. I had one of those moments again where the sheer size of life and living, with its varieties of emotions, situations and destinies all collided in my mind, and I thought about my place in it all.

So, yesterday, when I coupled my thoughts of that poor young man who passed away at 35, but accomplished so much in such a short time, the beauty and heartbreak of life's all encompassing power, and my own place amongst it all, I re-remembered something I try to hold dear in my own heart: and that is, everyday, to honestly try to be a better man.  A better person.  Some days, the leaps you make to better yourself and your place in this world are huge - you make a large difference in not only your own life, but by your actions and presence, you make a large change in other's lives.  Some days, the change is small - miniscule, but intimate.  In the end, it still matters because even the slightest variations in the patterns can echo in ways you never find out about.

It's not about being perfect, but it's about knowing that you can always be better.  I don't always achieve it - I have so much to go.  I suffer from a lot of self-loathing, and a lot of bitterness in some ways - but I also suffer from a glut of wonder, and awe - and I know these extremes well.  I'm happy when I can find some time in the middle, but I know I can learn from both ends of the spectrum.

I'm about to turn 37 next week - two more years than that extraordinary young man got, and almost 12 and a half more than I could have got.  I know that in the rest of my years, I'll be trying my best to be the better man I want to be - bettering myself by never giving up learning and thirsting for knowledge.  By never striving to be more kind and helpful to others and myself.  By tempering the darker parts of myself with the part of me that laughs at the sheer joy of it all.  Every day isn't going to be roses, but I accept that, and I try to make each day the best it can be.  I'm going to fail on some.  I'm going to fall BIG on some!  But I'm also going to succeed on many.  I'm going to live hard, love harder, fail bigger, and win more.  I've been a very fortunate man, blessed with amazing family, incredible friends, and the greatest wife and partner I could have ever hoped for.

I don't think I'm ever going to be some large cultural icon hero, but if I can change a few lives in my life time, that's better than to have drifted through it doing nothing at all.

Plus, I'm going to go fishing more this summer.  I never catch a damn thing, except for good friendship and some quiet contemplation.  I like that better than fish, anyway.  But I do love casting me a good line into the lake, with that hope that I might catch something amazing that day.


~Steve

Monday, December 15, 2014

The Gift of the Magi

December in upstate New York is actually a pretty magical time.  I've spent every holiday season here since I can remember, and I always took it for granted that where I lived looked like all the paintings and postcards of "Christmas".  As I put a few years behind me, I realized not everywhere looks like that at Christmas-time.  In fact, my friend from Australia showed me some Christmas Pictures of his family, and they were decked out in shorts and he was complaining about the heat! It's Summer down-under during Christmas.  He always says to me, "I wish we had snow here for Christmas!".  Many of my friends in the Southern Hemisphere say things like that.  If I could package up a little snow and send it to them, I would - but - alas, snow is just frozen water, and anything I'd send to them would just turn into a big, wet, box.  Which could be interpreted as some weird metaphoric threat, instead of the joy I wished to send.  I digress.

The thing is, I love this season.  I love the idea that for many people, this season means being thankful for the good things you have in your life.  You try to stand a little straighter; act a little nicer.  You try to be the best version of yourself that you can be.  You hug your family a little tighter when you see them; you look at them a little more wistfully, knowing you've spent and grown another year together.  You look towards that new year, and you think of all those things you want to improve and change about yourself and your life.  You try to reflect on what it means to be a good human being.  You catch a glimpse of yourself in the mirror, and you see another year added to the face that once was a child during this season.  You see the older you, but you remember that unbridled and unrestrained joy you could feel as a kid - and you see it in the generations below you.

When I was a kid, I was pretty sure the best gift I ever got at Christmas was "The Millennium Falcon".  My parents put that, along with a bunch of other Star Wars toys, underneath our Christmas tree for my brother and I.  We were fortunate; we had gifts every year, no matter what the circumstances were.  We were young, and we had no conception of those worries that I'm all too familiar with now.  Everyone hates to grow up - when you are young, you think you want to, and one day you realize youth is wasted on the young.  But one thing I have absolutely loved in growing up is being able to see what the real gifts in your life are.  How they don't fit neatly into a box with a bow under a tree.  How they didn't break the bank to buy and how you can't stand in a line outside a retail store the day after Thanksgiving to buy.

I don't need a thing for another Christmas in my whole life.  Not one thing do I need - I only need to spend it watching my family smile, laugh, joke - and love.  The greatest gift for me is just being here - so, if I seem quiet sometimes, it's mostly because I'm lost in reverie, taking in the moment, and trying to hold on to that precious feeling. 

My parents came, and gave me life - twice, in fact, they gave of themselves to ensure I lived.
My donor's family came, and gave me life when the light in theirs had gone out.
My wife came, and showed me just what to do with all the life I have been given.

I am not a wise man, but I am a thankful man.  The last twelve Christmases of my life have all been seasons I consider a true gift.  I could have easily been not alive for them, and in that time - I have watched my family grow and I've been witness to the beauty, wonder and joy of the season.  As I reflect on my love for family and friends, I try to remind myself of the things I can do to be a better person.  And I hope in my next year, I can accomplish more of the goals I set for myself.

To those who this season is not as joyous as it is for me, know that my heart and thoughts are with you.  To those who celebrate the season, my heart is with you as well.  And in this time of turmoil, where hearts are upturned, inflamed and at unrest - I wish peace on Earth, and good will toward men.  (Though not a man of religion, I think Luke 2:14 was indelibly impressed into my brain by Linus, from "A Charlie Brown Christmas" and that the sentiment is incredibly beautiful.)

Merry Christmas.  Happy Holidays to all - whatever season there is to celebrate, I hope we can all find some peace with each other, and an ease of mind (if only for a moment) that we all deserve. 

Now, to find some of those old Rankin/Bass Christmas features, and really start getting down with Santa Claus.

~Steve

Tuesday, December 2, 2014

My Book

I've been working up the courage to turn some of these blog entries, and other written works I've produced in the last 12 years, into a book for years.  I've been keeping notes, and I think 2015 is the year that I take the time to write my story.

I've been through so much in the past twelve years - from the amazingly sublime, to the depths of despair.  I've been quite open about some things, and closed about others.  I want to share my story, and I think I have a good tale to tell.  Over the years, people have told me they enjoyed my blog.

So, coming in 2015, will be the temporarily titled "The Kidney Boy Book".  Heh.  I have to think of something better sometime.

In the meanwhile, thank you all for your support.  I'll be self publishing this, I'm sure - so I'll keep details here, and hopefully, I'll make something decent.


~Steve

Monday, October 20, 2014

Semi-Annual Check in

Hey people! If you're reading this, I hope you're doing well.  I'm doing well, kidney wise, thank you!  Just celebrated three years with the new transplant.  Besides a minor scare earlier this summer where I got violently ill and as a result, dehydrated, I'm doing well.

ALWAYS REMEMBER TO STAY HYDRATED.

Still, three years out, I'd say one of the biggest hurdles to overcome in living with a transplant is your mental state.  Sometimes, I still live in fear of dialysis.  I live in fear of losing the transplant, and I have to work very hard to cope with that.

Well, this is just a short check in.  Again, maybe someday I'll have more drain dribble for you, but for now - just keep living.


~Steve

Monday, February 24, 2014

It's Been A While, but I wanted to Share

Hey - it's been a while, but I wanted to share this.  I was recently interviewed about my upcoming computer game, Quest For Infamy - a game that I had been dreaming of doing for over a decade.  I used to dream about it a lot during those long hours on dialysis.

It was a hard road, but I made it through, and I'm getting live a dream I had when I was 12 years old and it seemed impossible.  Sometimes life seemed impossible through everything I dealt with on dialysis and with my transplants.  But I did it.  Life is definitely amazing.

http://www.gamezebo.com/news/2014/02/21/dialysis-development-quest-infamys-12-year-journey


Thanks all.

~Steve

Thursday, November 21, 2013

Signing off for a bit

You know, this blog was a great outlet for me during a very hard time in my life.  Sadly, I just don't write in it now as much as I did before - so I think I'm going to sign off for a while here.  If something comes up that I might want to discuss, I can always come back.  But, I think for now, The Kidney Boy Blog is done.

Thanks to all who've supported me, helped me, engaged me and kept up with me.  I wish you all peace, happiness and health.


~Steve