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.

Wednesday, December 6, 2017

The Kidney Boy Grows Up

So, years ago, I titled this blog "The Kidney Boy".  Mostly because I was pretty young when all this happened to me.  I was a carefree 24 year old kid one minute, a chronic illness sufferer the next.  It was a lot to handle, especially in the early days.  "Kidney Boy" also has a fun little meaning to me; it's how my wife referred to me before we started dating.  Her friends would ask her about the "Kidney Boy" and she'd smile. 

I'll be 40 next year - a big leap in development, heh, or so I'm told.  I've felt old for years, but I suppose years on dialysis and two kidney transplants will do that to you.  I have two wonderful kids now, I married the girl of my dreams over eight years ago... I found the courage and the creativity to found a company and make the project of my dreams when I founded Infamous Quests and made our game "Quest for Infamy".

Not everything goes perfect, but it's been a life well lived since I was diagnosed with ESRD.  I'm having a real tough time right now, though.  My health has been shaky for the past six months or so, and recently it's been worse.  I feel very fragile in a time where I want to be strong - we have two young children, my wife works full time at a wonderful job, and though my foray into software and game development was fun, it cooled and my company has faded away.  Financially, I'm in dire straits right now, and it's producing a lot of stress and anxiety in me.  I'm trying to deal with it the best I can, but I feel very useless.  I'm very anemic lately, and it saps all my strength.  I'm caring for the children now, but I have to try and find a way to bring income into my family while doing something that can accommodate my phyiscal and health limitations. I was very worried about this - I still am, but lately, I've had a sense of hope.  I think things will go my way again, and I can begin to crawl out of this hole of debt I'm in.  Debt is terrible, and when I was younger, I didn't always make the most savvy financial decisions.  Navigating that arena is really difficult, and one of the hallmarks of becoming an "adult".  I know some people are worse off than I am, and some are better off.  I just want to get myself on track and help support my family.  I accepted years ago that I would come with some limitations, and my life would be different than was expected of a typical man.  I knew I probably wouldn't be the primary breadwinner in the family, and I am beyond happy to support my wife in her amazing career.  I just want to be able to provide support to us all, and have my family seek life, liberty and happiness with some level of comfort.  As a Father now, I hate to think that my children would suffer or go without because of my mistakes.

I am looking forward to this holiday season - I love my wife and my children so much, and I feel so close to our families.  Being as sick as I've been recently has brought the love of family back into focus for me - not that it was gone, but sometimes you forget to put that extra oomph into the ones who love and carry you.  I hope I can do right by everyone and make them proud.

Growing up is pretty crazy - I'm still growing, as an adult, and I'm having fun watching my children grow.  May all who read this be blessed and loved and I wish you all a happy, safe and merry holiday season.  Thanks for reading.


Sunday, October 22, 2017

Catching Up

Well... it's been a while since I've written here.  I have to catch up!

We had a daughter join our family in April! It's been amazing, but very challenging to have two kids under the age of two.  Since I stay home and don't work in an office, I have taken on full time care of the kids.  It's been awesome - I like being a stay-at-home Dad.  It's been an experience.

I've had some health problems this year, though, and my kidney was damaged when I got sick a few months back.  My creatinine levels have risen - they are stable now, but much higher than I'd like and my kidney disease has worsened.  I've been severly anemic as well - I had a stint in the hospital and had to have a blood transfusion.  It's actually been rough. 

My business went under this year as well, so financially it's been hard to close the gap.  It's a common enough problem for people who don't have to deal with ESRD and Kidney Transplants, but we're getting by for now.  Problem is, I don't know for how long and the stress and anxiety are starting to get to me.

These are all just things one has to figure out in the course of living; being human is tough.  Honestly, I'm glad my kids are so great and that they're well provided for.  My wife has a good job, and she has great health insurance which not only is great for me, but more importantly, it's great for the kids.

I'll get through this - I've weathered so much for so many years, and I have the love and support of an amazing family.  But I can't deny that it's been a few dark months for me - and putting on a brave face and trying to remain happy in that can be tough.  It reminds me of the grimmest days we had when I was on dialysis.

I hope those of you out there reading this are doing well.  I hope those of you out there suffering from ESRD, complications from dialysis or transplants are managing.  I'm sending out all my well wishes to you - because I know what you put out into the world at large is what comes back to you.  I've been very fortunate in the past, and it's because of the amazing people around me.



Tuesday, February 7, 2017

Holding Your Child

The other day, I was sitting in my chair at my desk, pouring over some work. My son was playing on the floor just next to me. He isn't speaking English yet, per se, but he definitely talks, and he was babbling away as he was playing with
his favorite toys - a wooden airplane with tambourine cymbals as propellers and an old Super Nintendo Controller I gave him. He was lost in his own reverie, but suddenly, he looked up, smiled at me, stood up and walked over to me, arms
outstretched. He reached my knees, and pawed at them, trying to climb up. I picked him up into my arms, and lifted him til he was sitting on my lap, and he threw his arms around me neck in a hug, and let out a little giggle. He's such
a sweet soul - and as I held my child in my arms, my own life began to flash before me in a minute. I thought of how small he was, fitting right in my arms - a little, fully functioning human who was my very own. I thought about how
once, long ago, I was this small and how I fit into my own father's arms this way. How I probably hugged him like this - so earnestly and so honestly full of love. Suddenly I remembered growing up - going from being small, small enough that my father could carry me from the car when I fell asleep coming home from camp. I remember growing, and becoming to big for that - and he'd have to wake me up when I would still fall asleep as I got older. How one day, he put me down and never picked me up again. How one day, someday - I'd put Jack down and it would be the last time I picked my boy up and held him close.

How he'd grow - and I'd get to watch as he experienced the world, developed his own opinions, likes, dislikes and preferences for things. I'd watch as he'd probably make what I'd deem mistakes. I know my father watched me do that - and I thought about what it was like to be at the sidelines, watching my life. My father and I didn't always see eye to eye on things - he was pragmatic and dedicated, great with numbers, tasks. He was handy, capable and knowledge able - and always willing to lend a hand. He was athletic, strong and enjoyed playing several sports. I was free-spirited, a daydreamer, strong-willed and stubborn. I was clumsy, earnest, and often frustrated when I couldn't make things happen easily.

I struggled a lot as a child, and would often have tantrums when my body and brain couldn't seem to work together, or when my brain seemed to fly of in 80 directions instead of concentrating on the task at hand. I was decidedly not-
athletic; I have the distinction of being probably one of the only people to strike out in T-Ball (My depth perception problems were just a foreshadowing of my need for glasses, which would finally happen a couple years later) and I
tried playing communal sports, soccer, baseball and basketball as a youngster, but I never quite got a handle on them. Once, in childhood basketball, being barely able to dribble and run at the same time, I once got a breakaway and ran down the court, dribbling CAREFULLY, and while all alone, I took my shot - a magnificent layup! I was alone, it was a no brainer! The ball got stuck between the hoop and the backboard. They had to get another ball, and throw it at the
ball to dislodge it to continue the game. That's pretty much a metaphor for my time with sports. As I grew, I found a love and a bit of an aptitude for music, which was a great way for my father and I to connect. He played guitar, and
when I was about 8, he gave me a little starter acoustic guitar and had me take some lessons. I went for a few weeks, but being young and frustrated, I stopped going after it didn't come as easy as I wanted it to. I could bang out a G-Chord
for years, but it wasn't til I was about 12-13 that I took a renewed interest and began to practice in earnest. We had a great bond over that, and he taught me a lot of songs he knew as my skill grew.

I remained the daydreaming, middling student, which will always put you at odds with your parents, especially when they know you're capable of so much more. I did all right,
though - well enough to go to college, for sure. I went, but I continued to drift, and even moreso in college. Those esoteric questions of who you are, what you want and where you're going bogged me down into a quagmire, and eventually, I dropped out for a time to try and "figure myself out". This is probably where our rift got the widest. Of course, being a young man and even though I was on
the stupidest, middle class vision quest one could pursue, I knew EVERYTHING and I was right. Meanwhile, you forget that your father has wisdom and experience that comes with age, and you ignore lots of good advice. But he was always
there, even in my greatest screw-ups. Even when I, in my own self-absorbed youth, though our rift was almost insurmountable, my father was there, concerned, loving and watching out for me. When I finally began to put myself
together in a decent way, and got myself back into school, he was there for me.

And when I started to break down, not just in a mental way but in a physical way, he was there for me ultimately in a way I never felt I was worthy of. When my kidneys failed, and I was put on dialysis - he immediately began to get tested and go through the rigors of becoming a donor for me. I was still
suffering from the shame of some of the stupid things I'd done in my life; and I was still convinced we had a divide between us. But, in a miracle, my father picked me up again, like when I was little, and he gave me a piece of himself so that I could live. That was 14 years ago this year, and I still - even after all this time - had a hard time comprehending that love. That sacrifice, that drive. That dedication, devotion and love to your child, even throughout the strife.

Our children are a piece of us, and as a parent, we hope they're the best of us. We know our children are different people than us, and we know that they'll often not be what we hope in certain moments - but we remember life isn't just
the moments, it's an entire experience. I don't have all the best parts of my father, but I have some of them and I'm so thankful for them. It's taken me years to try and get a little insight into everything he's done for me, but when I hold my son, in that instant, I know. I just know - I know that I would give this little boy anything I could, and even things I can't, because I love him. How I would walk to the ends of the Earth, how I'd walk through the fires and how I cross valleys and move mountains for him.

Someday, we may disappoint each other - I might not live up to what he wants, and he might not live up to my hopes for him, but I will always love him - now, forever, and always. That's the truest and best gift my father gave me and just
one of the many amazing things he taught me. I may have been a screw up in many of the traditional avenues of life, and I may have not turned out exactly as I dreamed or hoped, or as others hoped and dreamed for me, but I must have done something right in my stumbling along the way to be blessed with the family I have. I am beyond fortunate to be able to share the love I've been given, taught, shared and blessed with from my family, my friends and my wife - and I'm
lucky enough to share it with this little guy who toddles over to me, climbs up my limbs, and gives me a hug. I'm going to pick him up and hold him as long as humanly possible, I tell you that.