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.

Friday, October 19, 2018

The Kidney Boy Returns to Dialysis

Last Sunday, I woke up very early in the morning and went into the bathroom to do my usual business.  I noticed, however, that I was breathing very rapidly and very shallowly.  I went and told my wife - inititally we thought I was having a panic attack, but when my chest began to rattle and I spit up blood, we knew we had to call an ambulence.

I threw on some pants, a shirt, shoes, made sure I left my keys home, grabbed my wallet and insurance cards and waited for the EMTs.  They showed up, and gracefully loaded me into the ambulance and took me off to the hospital.

I spent the next five days there.  In that time, it was determined that I had pulmunary edema from excess fluid, congestive heart failure, and kidney failure and I'd need to go on dialysis.  Good thing I didn't remove my fistula after my last kidney transplant.  It worked like a charm.  I did dialysis on Tuesday.  It was rough, and I did not feel well afterwards.  The whole day is a blur for me.  Wednesday, another session - this time, much better.  I tolerated the treatement, recovered much quicker and Thursday, we had a great session of dialysis.  Friday, I did my last of the week, and I went home from the hospital.

I was hard being away from my wife and children this whole week; I can't even yet put it all into words, which is why I'm hastily writing this down.  I'll go into it more later, I'm sure, but I know I'm lucky to be alive.  So many people my age do just sadly die... but I don't want to yet.  I've got so much to live for.

Wednesday, September 26, 2018

Getting By

At the point I'm existing in now, I suppose I'm just trying to get by.  I have good days and bad days; some days, I am so tired and beat it's amazing.  Other days, I'm full of energy, optimism and go get 'em.  But even on those days, I run out of steam pretty quick.  I'm trying to conserve energy and put it where it belongs the most: into my wife and kids.  It can get pretty hard out there, living with a chronic disease, so you have to pick and choose where you place your attention.  Which can suck, because you can end up ignoring or putting other things you care about on a back burner.  It's just the only way you can get by.

On my bad days, I fee like I'm walking around in a mental fog; I usually feel like I'm pretty sharp and aware of things, but when my mental fog is on, I have trouble recalling the simplest of facts... even words escape me, and sometimes I just blather nonsense words to fill in the gap.  It drives my wife crazy sometimes, because I'll speak gibberish until my brain can find the right word it wants.  It's a weird habit, I admit.

I've changed my diet a bit, and I've lost a bunch of weight - this has helped me, I think.  I feel less slugish based on what I eat, and I'm trying to take any advantage I get.

I hope I can continue this line of self improvement after the transplant; I'd like to not gain weight again, like last time.  I'd like to continue to lose weight and get into shape.  I'd like to be able to play with my children more and do more active things with them.

Sometimes I worry that it's too late; maybe my cards are up.  But at this point, I want to at least try - I want to live my life like I am going to live 30-40 more years, and I want those years to be well.  I've spent most of my adult life sick and out of shape.  It's time for that change.

So, I'm getting by now, but in the future, I don't want to just get by - I want to be living that old proverbial best life.  Maybe I'm on the right path now.  Maybe medical technology will improve by leaps and bounds in my life and someday I can regrow my own kidney.  I have to have hope.  I've lived and survived 15 years of this with my hope, and the love and support of my friends and family.  I hope my hope lasts and their goodwill towards me endures.

Thursday, September 20, 2018

The Heart of the Matter

It's funny how you can go on for a long time, believing something is one way while someone else thinks it is a completely different way.  I guess our own personal thoughts can be something we get lost in at times; when you forget to share those and kind of coast on auto-pilot, problems can happen.

For as extroverted as I can appear, I am also often very introverted.  I'll sometimes share just enough to make people think I'm being open, but I'm holding back. Either intentionally or unintentionally.  Sometimes, though, when you've been coasting that way for too long, you look back and see how you've missed things or messed up certain situations.

I've been through a lot over the years, and I can become very "me" focused.  I really try not to be - and I feel that I give a lot of myself, but I have faltered at times.  Trying to keep my mind, eyes, ears and heart open is work - but I gladly undertake it.  Re-evaluating your own behavior and how you act is so important - you can't just coast on through life, and sometimes it becomes so easy you don't realize you're doing it.

Thursday, September 13, 2018

This is a real problem

I've been living with End Stage Renal Disease for so long, sometimes even I forget the severity of my condition.  It's been 15, almost 16 years since I was wheeled into an ER at age 24 and told that my kidneys were no longer functioning.  I was basically a bewildered child at the time; unable to process the information that without dialysis or a transplant, I would surely and most definitely perish.

That's a lot to hit anyone in a moment.  People grapple with this kind of info everyday, though.  Sadly, I'm just another number in a population of people who are told they are chronically (and often fatally) ill.

I've managed to carve out a life for myself in the aftermath; I can tell you that my plans for myself were quite different before I became a kidney patient, but even I can't say what life would have been like.  What happened to me defined the path I've gone on, and for better or for worse, it has been an adventure.  I quite like a lot of my life; most of the things that I hate are related to my health problems.  I've been blessed with a cadre of friends, the most wonderful family, and a spouse who is amazing in so many senses.

But it's all wearing on me.  At 40, I'm feeling the weight of life a bit more heavy than I did at 24.  I have responsibilities now; my kids and my wife.  I think 90% of my day is spent thinking about how I can help and benefit them, at least for the time that I'm here.  It's hard for someone who is chronically ill to not view themselves as a lodestone, dragging down everything good around them.  It's also hard not to get in your own head about it.

I'm trying to get back in touch with the things I love about life: music, art, books, conversations, laughter, adventure... stepping outside of the comfortable places that we tend to cling to, especially when things get hard.  It is difficult, though, as I have less and less to give of myself at this moment.  I'm so tired all the time.  My mind is... foggy.  I used to think of myself as somewhat quick-witted and occasionally clever, but now I feel like my thoughts are dragged through a lake of molasses before they can even reach my vocal chords.  I stumble over finding the right words to say.  Living life in this manner is extremely difficult for me.  I feel like I'm letting down the people in my world.

I think even I have  a way of pretending that it's not as bad as it is.  Death is an actual possible outcome here, and I can't pretend like it's not.  I can't let others around me pretend it's not either.  I read today about people who died because they couldn't get dialysis treatments in the aftermath of a hurricane.  That could easily be me.

I know I'll be back on dialysis soon.  Hopefully soon we also get results of the further testing on my wife.  Maybe then we can set up a surgery for a transplant.  If something happens that prevents her from donating for health reasons, I would never be mad at her.  I'd do my best to go on, doing dialysis as long as I can until we can find another kidney or maybe I'd get another miracle call.

I've already received too many miracles for this lifetime.  There's a part of me that feels like my ticket is all punched; I've run out of favor.  But who knows?  I want to be here longer - I've got too much love to give to my family yet.

As I write this, my son walked over to me, and asked to hold my hand.  He wants to take me somewhere and show me something.  I want to follow him for years; I know he's got a lot to teach me and I have so much to teach him.

Stay kind out there.  I'm trying to learn from my mistakes and be better, not only for myself, but for the world too.

Tuesday, September 4, 2018

The Kidney Boy Needs Another Kidney

So much has happened, I really don't know where to start with this one.  I started this blog years ago to chronicle my thoughts and experiences while on dialysis - I was lucky enough to get a transplant during that time, and after that I wrote for a while about living with the transplant.

Life is so complex; I'm not spinning anything new here with this kind of statement.  The mystery of human existence has been expounded on by authors since written language was invented, but I can only express my experiences with it.  It's complicated enough when you are a "normal" person without a chronic health issue; add in the things I've got going on inside my body, and it just changes the equation to something approaching befuddlement.

I've been feeling wan for the past couple years, but I figured that was due to the fact that we had two children in as many years, and suddenly I was a full-time parent to two children under the age of two! Add in work woes, declining health just seemed to be part of it all.  But the biopsies they decided I needed on my transplanted kidney showed that it was starting to fail.... not reject, like they worry about, but fail.  My body was killing this kidney, for some reason.  The same unknown reason that my body killed my native kidneys.  I'm still having tests done, but the answers aren't clear.  What is clear is that this transplant is on its way out, I'm going to be going back on dialysis, I need a new transplant, I am father to two wonderful children, and husband to the most amazing woman in the world.

Years ago, when I was sick and on dialysis, my wife (knowing she matched my blood type), "knew" she was going to be a match and give me a kidney.  I refused it at the time, citing the fact that I was young, strong and that we wanted to have children one day.  So when this kidney began to fail, she immediately got tested.  She ended up being a match.  We're working up to scheduling a transplant, but there's still a bunch to do. 

And it's a lot for her.  I know it is; she is one of the strongest, most determined people in the world.  She's held our world on her shoulders for years, like Atlas, she has carried us.  She carried me, and now she had the kids... and I feel more like dead weight than ever.  I worry about her mental well-being.  This is all so much.  She is strong, but she is not an endless wellspring of energy. 

I wish that it wasn't this way.  I wish I wasn't sick like this.  But I am. And I'm here.  And it's a weight on my family.  A Transplant isn't even a cure - there's always the chance it will fail, as has happened to me already!  We had seven years with this kidney.  It gave us so much... and if I do take hers, will it work?  Will things go well?  Will my body try to kill this?  There's so many factors here. 

I don't want to die yet, I don't want to lose my family yet.  I don't want to be a footnote in my children's wife.  I don't want to be just a memory to my wife.   But I have to face the fact that this may be my reality.  So I want to leave a good legacy for them.  I just hope they know how much I love them.  More than any of my silly little words could ever convey.

It's going to be a hard and trying time for my family in the next few months. I hope I make it out clean on the other side, healthy and happy.  Then I'm going to do my best to spoil my wife rotten and show her everything she deserves, the most of which is just peace of mind.  Then I'm going to hug my children all the time.

It's been my honor to share my moments and thoughts with all you - if there are still readers out there.  I hope that maybe something I've said has touched you, or helped you.  I'd like to think something I did made a difference somewhere.  I'm going to try to remember to live more in the moment, and do my best to be the best person I can be, always.

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.

~Steve

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.

Best,

~Steve

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.

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.