Loss

I saw an obituary in the paper today; it was the husband of someone I knew growing up.  My wife had told me that our mutual friend's husband passed away suddenly,  and it just hit like a ton of brick.  He was a year younger than me.  Just gone.  There's still pictures of them from Christmas up on their facebook pages.  We're here and then we're gone, instantly... leaving only the memories. 

I'm reminded of that old adage to live for now and appreciate what you have in the moment - it's so important to do that.  I often look to the future, off to the skies at the expense of the moment.  But I love all of it so much.  Sigh.  My heart hurts for our friend and her loss. 

The Christmas Season

This will be my 42nd Christmas.

I love the Christmas Season. I love the smell of pine, I love the homes decorated with lights.  I love the music that plays in shops when you're out and about; a musical myriad of different Christmas songs and different arrangements - some done in a classical music style, with orchestras blasting out the tunes of the season, or sometimes it's a pop arrangement.... sometimes its a folk arrangement, sometimes its an old crooner.  No matter what, I like the season.  I like the weeks leading up to the holiday and I like the anticipation for the holiday.

Most of all, I love spending time with friends and family.  I've been blessed with these traditions for over four decades now - and I have so many fond memories of getting together with my family.  Grandparents, uncles, aunts and cousins all getting together to celebrate the season and celebrate each other.

I'm so much older now, though, and I've lost people and things in my life.  I drive by my father's parents house often as I come home from dialysis. I glance over to that house on Washburn drive, now owned by another family making memories there, and I remember the lights my grandpa would put up outside.  I remember the Christmas Village my Grandma erected in the foyer as we all took off our jackets and boots. I remember the giant Santa Claus on the back wall of the living - a wall decoration that always hung for the whole season.  I remember the ginger ale, poured into cups with a diamond shape design on the outside. A treat for the kids that my grandparents always seemed to have.  I remember my aunt singing Christmas Carols in that beautiful soprano voice.  I can still her her vibrato when I think of the songs.  I remember the phone calls from my Aunt who lived out of town. How that 30 foot long twisty phone cord snaked around the room as everyone said Hi to Nancy and her family.  How we missed them at the holidays.  I remember sitting on the floor, playing with new toys among my cousins.  I remember the food - giant tables of it.  Homemade peanut butter balls my grandma always made.  I know I took these times for granted as a kid - it's all you know as a kid. But now, I have the gift of wonderful memories and feeling blessed that I was even a part of them.

I miss the people who have gone - my Grandpa, my grandma, my two aunts... I think of them fondly often, but ever so much more at the holidays. When I was a kid, I loved getting gifts - we all love the toys, the games, the gear that you can play with. But now, I appreciate the gift I have forever - the gift of them in my life, in my memories and in my soul.  In everything creative I get to do now, I realize there's a piece of them and the things they taught me and gave me. Boy, I miss them.  But letting them live on in Christmas, in me, and in my kids... that's a miracle.

I'm glad I got another spin on the globe to get here again.  I'm glad I have an amazing family - lovely kids, amazing wife and an extended family that is just beyond the best.  Merry Christmas to all. May we all have a great 2020 and try to make our world and the world at large a better, brighter place.

A year on dialysis. Again.

I should have posted this back in October, but my family commitments, dialysis, work committments, life commitments... well, they get in the way.

But, here I am.  Back on dialysis for another year.

Boy, this is hard.

This is really hard.  I've been doing this since I was 24 years old.  I'm 41 now.  I've spent my adult life dealing with ESRD.  Kidney dialysis.  Transplants.  Clinic Visits. Hospital Visits. Biopsies. X-Rays. Ultrasounds.  EKGs.  More tests.  Needles.  So much blood. Blood transfusions. Hospital Stays.  So many bouts of sickness.

I'm tired.  I'm tired of this life.  I know everyone in my life is tired of this life - my family.  My wife.  I know people say this as a cliche, but honestly I bet there would be some relief if I died.  Sure, there would be the initial sadness - but life goes on, no matter what.  Nothing ever ends.  I'm just not there.  The memory of me would be, and I would try to leave as many mementos of me around to keep me in their hearts - but the burden of all the rest... gone.  As hard as this life has been on me, I believe it's harder for those around me.  And this year.... well, dialysis has kept me alive. And I hope for another transplant.  But I wonder if I have a life to go back to.  I'm financially ruined. I'm not sure what kind of employment I'll find.  It's been nice to be here for the kids, but every Monday, Wednesday and Friday night I'm at dialysis for five hours.  I miss them going to bed.  I leave my wife alone with them for the evening after she's worked a full day.  It's just not easy for any of us.  And I have to vent.

I am sad. I am frustrated. I am just trying to survive.  But I am losing hope.

Time

I get all my medications from a company called PillPack. It's really handy; they mail all my prescriptions to me in a box that contains daily labeled packets, each with the medicines I need to take at the correct time of day. It was really useful when I was on a lot of anti-rejection medications for my transplant. My new box came recently, and for the first time in almost seven years, the packs do not have the anti-rejection medicines. They're noticeably smaller, and the amount of pills I take a day has been greatly reduced. This is like the last gasp of my transplant era - a reminder that it's truly over, and a dream has died.
It is truly a loss that I am mourning. I am in stages of grief about this. My transplant was my miracle, my family's miracle. Getting that transplant kicked off a series of events which changed my life - there was so much riding on it. So many dreams - and my wife and I were lucky enough to accomplish many of them. The loss of this transplanted organ is huge, and I don't know if I've fully processed it. I probably never will - it's my second transplant, and I just turned 40. I've been dealing with this since I was 24, and frankly the fact that I am alive is a miracle. People die everyday from what I live with. I read about it often in many kidney disease support groups I am part of. I see it in my dialysis center when people I used to see everyday don't come in anymore. Sometimes it's because they got a transplant, but sadly the reason is more often that they have succumbed to the disease. My own mortality is more fragile than I probably let on in my day to day existence, but I am acutely aware of it. I am in a much more stable position now, being on dialysis for over three months. The new routine is difficult for me and my family, but we are managing. With a lot of help from family and friends, we are managing. But I am definitely dealing with my own personal sense of loss. Seven years was all I had with my miracle. The hope was that it'd last the rest of my life, and to only get seven years... when I was younger, seven years would have seemed like a long time. Now, though, even 10 years doesn't seem like enough time. There is never enough time, it's a truth we all know but hate to face. It affects me even more now though, especially when I spend time with my children. There is truly never enough time. I am glad I had the transplant for the time I did. But I want more, and I'm mourning my loss - the loss of my transplant and the loss of time. I have less and less every day. They say your life flashes before your eyes when you pass, and I know those moments will stretch into eternity for me and in that gulf of time I will miss everything and everyone so much. And for a moment, time will be all I have. For a moment.
Thank you for letting me talk about such things and being supportive to me and my family. Events like this would be unbearable without the love and caring we're surrounded with.

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.

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.

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.

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.

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.

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