And now, a thank you - for you, my readers!

Well, it's almost the end of a crazy year for me.  I just want to take a little time out to say "Thank You" to you - my readers.  I've gotten a few comments on some of my entries, and I've gotten some emails from some people, and I have to thank you - those make all the difference.  It's really nice to know that my writing has entertained, inspired and educated so many people from so many different places.  I enjoy writing, and I enjoy sharing it with other people - so thank you for taking the time to read what I have to say.

I'm looking forward to an interesting year as I get back on my feet again, and head out into the world as a new kidney recipient.  Not being on dialysis this Christmas is the best gift I've gotten in years.

So, again - thank you so much, all of you.


~Steve

A Christmas Story

I've always loved Christmas.  Especially when I was a kid.  I was having dinner with my parents and my wife recently, and my Dad remarked that I was "... Always great to be around on Christmas." because I was just such a bundle of excitement and joy.

I just love the season.  I love Christmas Lights on houses, I love singing Carols, I enjoy listening to Handel's "Messiah", I like it when there's a nice coating of snow over the ole' town.  I grew up in a small town just outside Syracuse - it bordered the countryside, which is a great place to take a drive through on Christmas.  I remember sitting in the backseat of my parents care, slight layer of frost giving a halo-like glow to the Christmas Lights on the houses we passed as we drove between my two Grandparents houses.  I was lucky enough to know both sets of my Grandparents while growing up.  There was always a lot of family, always a lot of love, and always a lot of FOOD!  My God, the food.  Endless bounties of snacks and beverages when you walked in the door.  Candy in dishes on every corner; as much Soda Pop as a kid could drink (without getting yelled at!) and just a mass of relatives that were so happy to see you.  Every year at this time, I still feel that joy and wonder in my mind.  That feeling of being three feet small, scampering around in a quickened gait that you didn't even notice.  Now, I lumber around at six feet tall, ambling slowly from room to room because I can already feel my knees get creaky!  But now, I'm the one who's excited to see the new children who are excited for the day.  The run around the house, playing games of fanciful imagination, and talking with a rhythm that's so quick and so foreign to me now - yet, I still appreciate the patter.  I hug my relatives, and I make merry - though I try not to over-indulge in the food and drinks, because if I do that now, I'm going to have to chug half a bottle of Pepto-Bismol later while I sit on my couch at home and whine!

I took these scenes for granted as a child; when you're young, you just take the world you are presented with for granted.  You don't have any other choice; you just know what you see.  I was so lucky to have a family that celebrated this way - and remembered to make merry with each other, and share the love that was so important at the Holiday.  As much as I loved the presents we got, and I was ALWAYS excited for that - I just loved being with these people.  Heh, on Christmas Day - after my brothers and I had opened presents, one of the first things I'd do was call my cousin to see what he got, and we'd share and get excited to hang out and see each others new stuff.

I love that I'm still here, at 33, to share my Christmas joy with these people.  We've lost a few blessed souls along the way, but picked up a few new ones.  Yet for all of the losses, the struggles the changes, the trials and tribulations, we still get together to make merry.

That's the greatest gift in my world.  I see all of these "Black Friday" sales events, and the ensuing madness as people push, yell, steal, swear and degrade themselves in all manners just to get some consumer goods, and I just get sad.  People fighting, gnashing teeth and screaming, to obtain flat-screen televisions?  Or the incident where people were beating each other to get a waffle maker.  A WAFFLE MAKER.

I know not everyone is as lucky as I am to have such amazing family at the holidays.  But filling the void with consumer goods?  I know everyone likes things - we all like to get presents on Christmas.  Some like to give as much as they get - but this madness of recent years... it hurts my heart.  I could blame retailers, for encouraging this, and I could blame people for not having the self-restraint not to participate.... the truth is, everyone is to blame here.  And it won't stop.  My only hope is that people just try to remember to keep a little tenderness in their hearts.  There's always going to be more stuff.  I can always get a flat-screen television, but I can't sit down and have a beer and chat with my Grandpa Alexander any more.  The truth is life doesn't last forever, and people will leave you.  I'd rather take the time to make the memories I'll cherish when they're gone, than to worry about what I will get them.

People have been asking me what I want for Christmas this year, and I can only sit back and say "I don't know."  I do not want for anything.  This year, I've already been given so much.  I was given a reminder of the gift of friendship, when hundreds of my friends stepped up, came out and supported me with the whole Steve-Stock thing.  I recieved hundreds of donations from friends and family not only local, but all across the United States and the World.  I had donations come in from Europe, South America, Asia and Australia.   It was amazing, humbling - and timely too.  Shortly thereafter, I recieved a gift from a family I do not know, nor have ever met.  This family donated an organ to me, from their deceased son.  And as I sit here, alive and well this Christmas - not having to sit in my dialysis chair on the day for the first time in over four years, they sit at Christmas with a chair of their own empty.  And my heart and my love goes out to them.  I know this Christmas will be incredibly hard for them - while I go on to celebrate with my own.  I toast them.

And I say, if you know me, take a moment to toast that family as well.  They are hurting this season, and I couldn't give them anything in this world to ease that pain.  But, perhaps, if we all send them good wishes, they can find some comfort together this Christmas Season.

Merry Christmas, to you and yours.  And a Happy New Year.

May 2012 be a great year for all, and not the harbinger of doom and gloom as so many callously claim.


~Steven

Heading for the Frosty Hills....

Winter is approaching here in Syracuse.  We're known for our snowy and icy winters.  When I was younger, it didn't bother me much, but now I just don't get along with the cold.  Well, I didn't on dialysis at all - I'll see how I do this year, but so far any encounters I have with the cold air still suck pretty hard.

Winter time is such a dormant time, a lot of time for reflection.  Truth is, I'm four months out from my transplant - which was amazing.  All the outpouring of support from friends and family was amazing - I'm still reeling from it.  But now, I'm a few months out - and things, on paper, are working great.  My labs are amazing, I feel good, physically (aside from a few lingering GI problems).... yet, still, there's a pretty gaping hole inside me now.

I guess, well, when you've been sick for so long, you kind of settle into a life of just trying to get by.  Now, I sort of feel like I don't quite know what to do with myself.  I've been fighting for so long, and now - the hard part of the fight has been lifted.  I'll always be fighting in some way, but the large burden is off my back.

My life, as I knew it, ended when I was 24.  I'm almost 34.  It's been 10 years of living like this, and - well - I kind of don't know where to go on the other side here.  Part of me feels like I've been in a coma for 10 years, and I've just woken up and I don't have the slightest ideas where to go or what to do.  I can't (and don't want to) go back to the life I was living before;  I'm too old for that shit, and frankly I wasn't headed down any great path there.  But where do I move forward to?  Sometimes the most frightening thing about being alive is having a great wide open path in front of you. 

Finding your way down it is the human experience, and of course, I know I will.  But, I guess, I do feel some apprehension, I do feel some depression, and I do feel a little lost and kind of useless.  I'm sure everyone feels like this, especially at crossroads in their lives.  I've got a lot to do now, and the worst part is just working through the months of slogging it out to get where you want.  Doing it in the winter, when I get seasonally depressed, is going to be hard.

I just wonder what life has in store for me.  Better yet, I wonder what I have in store for life.  I guess I still hold that dream that I want to do great things, but for now - I guess I'll settle for doing something - anything.


~Steve

I Would Be A Bad Billionaire

I drive my wife in to work every morning.  It's a rather nice ritual; we get to spend some time together, we listen to the radio and chat.  It's one of those things you might think would be a pain, but instead it's one of those little joys that make life bearable. 

Every morning for the past month, I pass a hospital on the way - and every day, parked outside of it along a corridor where many visitors park, I've seen an SUV with writing in the back of it's window.  It proclaims a mother's love for her son's High School Football team.   And every morning, I see it - sometimes on one side of the road, other days it's moved to the other.  But it's been there every day I go by.  And I wonder who she's in there to see, everyday.  I wonder what kind of tragedy has befallen someone she loves, and I think of her travelling to the hospital everyday to see them, early in the morning.  (The team referenced on her car is from quite a ways from Syracuse.)  I think about what she's going through - and I think of the lengths we can go for the ones we love.  How your own well being can be set aside, to be there - to provide support, comfort.... anything.  I don't really know why she's there, but if it's for someone who is badly hurt (as I think it is in my own little head), and my heart bleeds for her.  I wish there was more I could do.

I stopped at the grocery store after dropping my wife off; I was picking up a few things when nature called, so I excused myself to the bathroom.  When I went in, I saw that there was a homeless man in the stall, washing himself up - bags and bags of "stuff" that he was carrying around just laying around.  He looked rough; it was a cold, cold night in Syracuse last night, and I think he was cleaning up and getting warm.  I wished right then I was wealthy enough just to hand him a bunch of bills and simply say "Stay Warm."  I wouldn't care what he did with the money.  There's some out there who'd use it for some not so savory things, but I don't even care.  Whatever misfortune befell this man.... he was out there, living a rougher life than I.  I remembered to be thankful for my warm home, my loving family, my amazing friends, and my incredible wife.

I'd be a bad Billionaire, because I do have a bleeding heart, and I'd be throwing out my money to strangers like it was my job.  I know that's not the right thing to do, but I'd probably end up doing it anyway.  I don't know how some people can be so selfish - I'm not saying give money to bums, but I know people who are selfish towards their friends and family! 

I guess almost dying this year, and getting my miracle gift really made me think about all the things I love about life - the things I'd miss if I were dead.  I don't think dying with a bunch of cash to my name, and a long list of people who hated me would be the way to go.  I'm not monetarily wealthy, but what I do have.... I'm lucky for it.  I can't fault people for their greed, but I do feel sorry for them.  I just wonder if it will be worth it to them when it all ends - and it will all end for all of us someday.  Can you clutch your bank statement when you die, or can you hold the hands of the ones you love?

~Steve

The Guilt

Having had my new kidney for about two months now, I've really come to love and appreciate the simple ability to urinate again.  When you've been on dialysis for a long time, you forget what it's like.  Seriously.  It seems like such a basic (and slightly disgusting) part of life, but when the ability is gone..... you forget.

It's amazing.  Really.  And I feel great everytime I do it.

Yet, there is a sense of guilt in me - for my former comrades in dialysis.  The ones still stuck in the chair.  Still stuck with the needles.  Still stuck with the PD cath's. 

I wish you could all feel what I'm feeling. 

Kidney disease - dialysis - is horrible.  It's absolutely, soul drainingly awful.  You're just.... lingering.  Waiting... either for a miracle or for the final curtain.  Seriously.  Sounds morbid, but that's it.  And the shame of it is that most people really do not understand how diabilitating the disease is.  A lot of people think you just "go do dialysis" and you're all better.  It's just a machine keeping you hobbling along until the next treatment.  It never ends.  People languish for years - becoming former shadows of themselves.  And it's not just adults - there are CHILDREN on dialysis.  That thought breaks my heart.

So, yeah, I feel some guilt that I was given the luck of the draw, and I have a chance at a better life.  A transplant isn't a cure; as I've said.  It's just another form of treatment - a much, much better one.  But it's not a cure.

We need to support the sciences that will unlock keys to not only reverse nephrotic damage and heal the nephrons in the kidneys, but also sciences that would allow doctors and scientists to regrow kidneys for people.  Someday, probably long after I've sailed off this planet, they will be able to simply solve these problems.  But the work has to be done.  There's too many people suffering.

I don't know just what to do yet.  But I'll found out.  I will find out how I, and others, can support the promotion of kidney research.  I will find out how we can support the patients who are on now, and maybe ease their burden some.  I want to live my new life to the fullest for myself and my family - but I also feel that I need to give back, and help others find some peace.  Otherwise, I'd feel unworthy of the gift I've been given.


~Steve

Sometimes I feel....

Yeah. 

Sometimes I feel like my kidney failure robbed me of 10 years of my youth.

And, you know what - that pisses me off.

I feel like I've languished for 10 years..... 10 years.  10 years of the prime of my life..... I spent only being able to give life a middling effort because I was simply struggling to exist.

Then again, sometimes I look at that time and I think "Damn.  I did a lot with 10 middling years.  I did more than some people will ever do."

And that's true.  I did a lot of things, and I lived life the best I could.

But I can't help but feel robbed a little - and now? Now, I feel like I'm dumped out on my ass - thrown back into a real world that I haven't really been a part of for a decade.  I have to pick myself up by my boot straps, lick a few wounds, and start it-the-hell all over again. 

Getting the transplant was a gift; the miracle will be putting my ass back into this world, and doing something of value with myself.  I have to be honest, I'm not quite sure what the hell I am going to do with myself - I'm in my mid-thirties now, and I feel like I have no direction.  Where am I going to go?  I sure as hell don't have the naivety and uber-strength of youth to throw myself into some crazy, ladder climbing career and try to build myself from the ground up.   I've got a family to support now, so I'm not going to go chasing the dragon of some kind of artistic career.  I'm going back to school in the spring to finish up the degree I left behind almost 10 years ago, but what the hell am I going to do with a bachelor's degree? 

Yeah.  I'm human, I'm a bit uncertain, and I'm certainly a little scared.  I guess I'm just more mad.  You know, I get this new kidney, and I start to regain my health - but now I'm like "well, self, what do we do NOW?"  I guess on dialysis, you're just so worried about staying alive, you don't think about the after.  Well, maybe others did - maybe they had some kind of stable life before they got sick.  I didn't.  I got sick right when I was just starting to figure things out in my twenties.  Now, I'm on the other-side and feeling as whiny as some emo assbot in college. 

This is silly.  I'm sure everyone, even those I think have it together, have these "what the hell am I doing???" moments. 

Guess I just needed to vent - to write it down.  Sometimes, for me, putting the "words to the paper" helps it become real, so then I can just move beyond all that.  I know I'll find something.  I'll find me.  And I'll do right for my family.  But, everyone doubts and wonders sometimes.  Thanks for listening to me vent.

~Steve

Recovery and The Big Move

My Wife and I moved into a new place last weekend.  It's larger than our last place, but most of all - it's a home away from where I did dialysis for four years.  I don't know - I had a lot of emotions during the move. 

I spent many a day lying in my bed, feeling like crap, yearning to be free of dialysis - and when things got their bleakest, I seriously thought that I was going to die in that house.  I thought that it would be my last place of residence. 

And with the move, suddenly, the world changed again.  I could move - I could pick up the pieces of my life (and all the furniture and nick-knacks!) and start again.  To be able to do that.... well, it was overwhelming.  You resign yourself to a certain kind of life when you're chronically ill, and to have all that change in a matter of months.... well, life throws you curve balls all the time.  I guess, for me, I'm still amazed when I keep swinging.  Especially because I tend to be hit by pitches all the time!

The move was nerve wracking for me - especially since I couldn't really carry anything heavy, or really do much.  I'd get tired and winded pretty easy.  I'm woefully out of shape - spending four years in a dialysis chair can bring you down.  And let's be honest, I've never been the peak specimen of physical fitness.  But I'm looking forward to slowly rocking me into that position.  I hope to be better physically fit in a years time.  Not too lofty a goal. 

But my new place is becoming a home; Jordan's so good at making our house a home.  She did it for us at our last home.  She made it cozy, warm, safe and inviting.  She's doing it all over again here, and with such gusto! 

Our new start, and my recovery continues.  Having a transplant is a miracle.  I feel so different.... can't wait to see how the next few months pans out for me.  Baby steps - I wanna go conquering the world, and lifting logs over my head, but I'm still a bit banged up.... heh.  Someday, though.  Someday.

To all my friends still on dialysis - hold on.  I know how hard it is.  I just want to be able to reach out, and heal you.... or give you some of the relief I have now.  I hope it comes for you.  I know you're often maligned and misunderstood by friends and family - even doctors and health care staff overlook ESRD patients from time to time.  Time will come when more people understand our disease, and the dire straits it puts people into.  I know it's hard.   But I wish you the best that I can.  Hopefully, in the future, I can do something to help all of us in our struggle.  I feel it's my duty.

So, here's to new starts, hope, and perseverance.  Sometimes, it's all we have.

`
~Steve

Cynicism and Optimism: Joy

A lot of people who know me might describe me as a cynic.  It's true, I can be curmudgeonly and I have very strong opinions on many social matters and trends.  I guess it's just because I have such a passion for life and for living.  I've always been this way.  I can get cranky about a lot of things.  It's just my way.

But, I know I'm not a true cynic.  Behind most cynics, there's a cauldron of optimism that brews and it's that pile of hope that actually fuels our cynicism.  I know that my cauldron of optimism is pretty giant and it boils hot - it must, because I think that's what really kept me alive all these years as my health was failing.   I know there's good things despite all the bad that can happen, and you really need to try and grasp that when you can - and make a small difference in your own life and hopefully, the lives of those around you.

Doing a bit of light traveling this Summer made me think about it.  A few weeks after my Transplant, my wife and I got away to Lake George for a couple of days.  We went there for our honeymoon (as I was on dialysis, and we could travel there with the machine with little effort) and we went back the next year.  I'd planned to go for a couple days this year, but suddenly I was in the Hospital on a Saturday, getting a transplant and Monday was our anniversary! So when I was well enough, we got away for a couple days.  I enjoy the Lake and the Adirondacks, and I even love the Tourist-y kitsch that surrounds the town.  There's a lot of resorts who had their heydays in the 50's and 60's.  They still have that ole crazy Googie Architecture to them.... I just love it.  But my favorite part about the trip is driving home. We take Rt. 28 across the Mountains, through Blue Mountain Lake and down to Old Forge.

When I was a kid, my Mom and Dad would take me and my brothers camping in Old Forge in the summers.  I have so many fond memories, not of the Camp Sites, but of going to the Towns that surrounded the area.  It was the early 80's, so many of those great tourist shops, restaurants and other places that sprung up in the 50's and 60's were still there.  The place still looked the shining example of post-war America - before the Freeways, when the local routes were king, and driving the roads with your family on vacation was all part of the American Dream.  I guess, even as a kid, it reminded me of that optimism of post-war America in the 50's.... where we could do anything, and be anything if we worked hard enough.  Sure, some might say that we whitewash over a lot of bad about the era - in fact, that cauldron of maligned people is what exploded the social revolution and societal change in the 1960's.  So yeah, there was some not so great things about the time - but there was that great sense of optimism.  If we take anything from that era, it should be that - and everyone should be allowed a piece of that.  As much as I loved the social revolution and change of the 60's, it was just that which the birthed the cynicism and distrust that permeated the 70's and into the 80's.  People had lots of reasons for it - but in that, the cynicism was not tempered with the optimism.  So when I came into this world in the late 70's, growing up in the 80's - I felt that sting.  And as an odd child, it affected me.  So when I was taken to this place that suddenly reminded me of joy and optimism, well it just clicked with me.  Even if I had no clue why - some things in this Universe just stick with you, even if you're too "young" to comprehend why.

Driving down Rt. 28 still reminds me of that feeling of optimism today.  It cleanses my soul to ride that expanse of road.  Up and down mountains, past beautiful streams - past old billboards and roadside attractions of yesteryear, past beautiful lakes and Summer Getaways.  Past fisherman standing by the banks of creeks, long into the day when the sun starts to just set a little in the sky.  Past amusement parks and ramshackle camps.  Past the ghosts of my own childhood, and my hopes as a child.  When I was a child, I just wanted to grow up to be an Adult who could still love all of this stuff.  Well, I did that.  So if I feel like I never accomplished anything in life, I know I've accomplished something I wanted for myself for almost 30 years.  And it makes me feel good - it fills that cauldron of optimism again, and makes me able to face to world and hopefully fufill all the aspirations I have for myself now for the next 30 years.

So, yeah, I may be a little cynical from time to time.  But I'm really a dreamer.  I'm really a hopeful person.  And I, despite all the stuff that seems to piss me off, I am a lover of life.

~Steve

Family

I have been an ESRD patient since December 31st, 2002.  I was 24 years old at the time.  It's been almost a decade living this life.  So many things wander into my mind when I think about the disease as it pertains to my life - what I lost, what I gained, and how my whole life, outlook, hopes and dreams changed.

I have been lucky in one constant - my family.  I feel for those who feel the lack or loss of family in their lives - I have been blessed with not only a tight biological family, but there are those who have become family because of the love and friendships we've shared with each other.

I've also been blessed with an incredible family via my wife.  They have taken me in as one of their own, and I've been privy to the wonderful love and compassion that they share with one another.

All of these families have been my rock as I struggled through dialysis with Jordan.  They're with me now, as I heal up and become accustomed to life again with my Kidney Transplant.

I guess what I'm trying to say is I'm glad I try to cultivate my friendships and foster my relationships with my family.  It isn't always easy, and I'm not always perfect at it, but I try because I feel it's important.  All we have in this life, really, is the connections we make with people.  People have taken time out of their lives to make me more comfortable and happy, and I expect nothing less from myself.

So, if you get a chance - remember to call that old friend you haven't in a while, or drop them a line on Facebook.  I get those all the time, and I love it.


~Steve

My New Kidney - Part III

So, I was wheeled down to the O.R. at 3:30 in the morning.  I was already a bit groggy at this point, which totally affects my memory - so bear with me if the events here as I recall them are fuzzy.  I'll probably have my wife chime in here from time to time to fill in the gaps.  I mean, after all they sedated me and then put me under!

So, there we were - Jordan and I, sitting in the waiting room of the O.R.  Well, she was sitting.  I was sprawled out like a happy dog on my bed.  They'd given me a shot of some kind of happy juice, so I was just content to listen to the elevator music that was coming from somewhere unknown.  Jordan sat there, holding my hand and stroking my hair.  It was very peaceful. 

I heard some random grumblings coming from some of the people at the desk; they were there to assist in the surgery in various ways, and it sounded like they were complaining about something.   About what, I didn't know - I didn't know why they weren't mellowing out to the groovy sounds of the Muzak version of "Band on The Run" that was coming from down the hall.

Suddenly, as if I heard the hoofbeats of a marching army, my surgeon showed up.  This lady is a tough, no-nonsense, take no prisoners, lets get the job done and get it done right kinda lady.  Basically, she's awesome.  She comes into the room, and I can smell the palpable anger.

"I've been calling down here every 15 minutes for the last hour!" she screamed at them.

The team was grumbling that they were waiting for her.... and she chewed them out, hard.  After this minor screaming match.  She marched over to me and Jordan, huffing and puffing from chewing the others out, and shouted at us....  "You're IMPORTANT!!!" and she marched off into the distance.  Even though I was stoned to the gills, I was even a little shocked.  But Band on The Run soon overtook me again.

With the situation resolved, my surgeon went down to the operating room to prepare.  I laid there - holding Jordan's hand.  We sat quietly, merely looking into each others eyes.  This was it.  The moment we'd been waiting for.  All of our hardship, all the work and sacrifice of the past four years - in a moment, everything would change.  We needed no words.  After all we had been through together - that magic moment had arrived.  I've only ever felt the pulling gravity of love and anticipation so hard twice in my life - once was when I stood at the altar, looking down the aisle to see my bride coming to meet me - and the other was when she held my hand, looked into my eyes, and made the silent promise to be with me as we ventured down this hallway.  

Soon, the orderly came to take me down to the OR.  I'd been down this path before.  I remembered being marched down the same hallway seven years ago, to recieve a kidney from my father.  I remember the longing, the anticipation.... and here I was again.  Being wheeled slowly down that long, sterile white hallway, to the double doors of the OR.  Laying on my back, watching the ceiling tiles fade out into that world behind me - feeling the rush of briskly cold air as I entered the OR.

The Doctor asked me, "Hey.... do you mind if we listen to Lady Gaga during the surgery."

I tried to think of something witty - if you know me, you know that to put it mildly, I am not a fan of the Gaga's music.  But, I was too groggy....so all I spit out was.... "Hey.... it's okay, it's just a Bad Romance...rah-rah-oh-la-la...."

I was placed next to the tiny operating table, and I slid myself over on it.  Those things are small. I am not a small boy, so I felt a bit weird.  I looked up and saw a big bright light..... and the anesthesiologist said, "We're going to put a central line in you, to administer the drugs...."  I said, "Will it hurt?"  he said, "Hahah, you won't feel a thing...." and he placed a mask over my mouth and nose.  I breathed in, and within minutes I saw black.

A few minutes later, I woke up real groggy.

"Great," I thought.  "Of course the medicine would wear off before they even start...."

"Man," I said aloud. "Have we even started yet??"

A nurse said to me, "Honey.... we've been done for a while...."

And suddenly, I realized I was a little sore and stiff, and my belly definitely felt funny.  Jordan was there.  She was beaming.

"Baby..... you've been making urine like crazy...." she said, and held up a bag.  It was almost full of urine.

I was stunned... it really happened.  It really happened.  I wish I didn't feel like I was BADLY hungover!

Jordan looked so happy - she took a video of me.... and we posted updates to Facebook, to keep everyone informed of what was going on. 

And thus began my road to recovery.

~Steve

My New Kidney - Part II

.... So, on a normal Friday, I hung up the phone, having just been informed that I might be candidate for a kidney that had come in.   I was a bit stunned, but I called my wife, Jordan - she was at work, getting her morning report and getting ready to begin her shift.

"Honey, hey."

"Hey, honey, what is it?"

"Yeah, the transplant clinic called.  They might have a kidney for me."

"What?  Are you messing with me?"

"No, this is for real.  I'm heading up to the hospital now."

"Okay....ummm... come get me?"

"Sure, I'll drive by on the way."

We said our goodbyes, both dumbstruck, and I headed up to the hospital.  She worked at the VA hospital around the corner from Upstate, so I swung by - she was already outside.

"I just dropped the phone and said.... I gotta go.... Steve has a kidney....and the whole floor went nuts.....they told me to get going...."

We hugged, and headed to the parking garage.  We parked, and slowly walked into the building - we checked in and headed upstairs, to the Transplant Clinic.  Eventually, they put me in a room - and my nurse practitioner came in, and explained that they wanted to get some blood from me to do another cross match to ensure I was a match, and she also said that the head of the department and the staff of surgeons would be in to talk to me.

It was also explained to me that the kidney had come from a "High Risk" donor.  Apparently, it was from a young man who had died from an overdose of heroin.  Intravenous Drug use is a high risk behavior - so they were performing what is called an NAT test on the kidney - this ensures that the organ is viable, and doesn't contain any diseases such as Hepatitis C or HIV.  His blood was tested, and no sign of those diseases were present, but they could lay dormant in the organ.  The NAT test shortens the half-life, basically, so that it can be determined that the organ is safe.

The head of the department came in and explained all of this - I'm relaying this to you as best as I can remember, so the specific details may not be entirely correct, but this is as I understand it.  The risk is low, but they have to inform me of it.  She then said, on a personal note, that if she were in my position, she would take it.  The match was perfect, she said.  A lotto winner.

Jordan and I had discussed this possibility at length when I was on dialysis.  I looked at her, and she at me - we already knew what our answer would be.

"We've talked and thought about this very situation, and we both agree that we want to proceed," I told the Doctor.

She smiled and said "Okay.  Let's wait on the results of the NAT test, and we'll get back to you."

We did a few more tests to see how ready I was, physically, for the transplant.  They were satisfied - so we asked the Nurse Practitioner if we could go home to collect some things, and maybe do dialysis one last time to get me really clean and ready for surgery.  She agreed that it was a good idea - the results for the NAT test wouldn't be in till 11 or 12.... so we got into our truck, and headed home.

We were in a daze..... a kidney was in our reach!  This could be our miracle - we desperately needed it.  My health was slipping daily - I didn't know how much I could hold on.  The weight of being my caregiver had wracked Jordan as well.  We were both hanging on by a thread - but we had each other.

So, as we waited for the NAT results, I, in all my wisdom, decided to get the oil changed in the truck.

It needed it, and I was going to do it that day anyway.  So, there we were.  On Pins and Needles.  Get the oil changed and the brake light fixed in the car at Valvoline Instant Oil change.  We were waiting with baited breath, when my phone rang again.

"Mr. Alexander?  The NAT came back negative for all diseases.  We'd like to formally offer you the kidney."

My heart.... I literally felt it jump.  The tears welled in my eyes.  I told Jordan.  We held back shouting.... but the tears and hugs flowed freely in that little oil change garage.  We told the attendants we were leaving there to go get a kidney transplant.  The crew cheered for us - and we pulled out the garage.

We went home, did our last session of dialysis.  Jordan put the needles into my fistula, just like she'd done everyday for the past two years.  I'd spent a total of four and half years on dialysis this time.

It was the last time we did dialysis at home.

Later, that afternoon, I checked into the hospital.

I was wheeled into the OR that morning at 3:30 AM.

I awoke, several hours later - groggy, and I was greeted with a bag of urine that was attached to me.

I was never happier to see a bag of pee........

(TO BE CONTINUED)

The Story of my Kidney.....

 So, wow.  I got a new kidney.


It's been a long road.  Four years of waiting.  Four years of hoping..... I probably still haven't faced the sheer magnitude of it all, and I'll probably be writing about this event for a long time.


But for now, I'm just in awe.

Friday, July 22nd started out like every other day for the past four years.  I woke up feeling like a bag of assholes.  Yeah, a bag of assholes.  That unpleasent.  But that was normal - pulling myself out of bed and heading to the toilet to sit on it in agony was routine, and this morning didn't disapoint.   I managed to eat half a Pop-Tart and a small glass of water before I took Jordan in for her day of work.  She was working a 12 hour shift at the hospital, so I knew I'd have dialysis late at night.  I'd probably spend the day moping on the couch, sleeping, reading and surfing the net because I had zero energy.


I drove Jordan into work, and kissed her goodbye - and as I drove home, I got a strange minor surge of energy.  I knew we were out of milk, and Jordan likes to have cereal in the morning, so I decided to drive to the Supermarket to get some.  I got to the store, and strode in - noting just how weak and tired I felt, I made a beeline to the milk.  And then my phone rang.


It was Lavell from the transplant center.

"Are you sitting down?"


"Well, I'm in Wegman's buying Milk....."


"Okay.... well, it's not definite yet, but we may have a kidney....."


Suddenly, my day got a little more interesting.




(TO BE CONTINUED)


~Steve

And I come home with my new kidney....

Now we wait....

Hello all, this is Jordan, aka Kidney Wife.
Steven was wheeled into the OR this morning at 430am. We haven't heard anything from the doctors yet but we're keeping our fingers crossed. More info as it becomes available!

And they offer me a kidney.

I was offered a kidney today. Going in for surgery tonight.

A Short Video of Me on Dialysis

This is a short little video of me on dialysis.  If you've ever wondered what it looks like, here ya go.  It's not too exciting.   This was shot with a little app that makes it look like an old 8MM film, so it's supposed to look old and crappy!

~Steve

Sharing Thoughts

I enjoy writing this blog; it is, of course, in many way cathartic to me.  There's a lot of brain dribble that occurs when you live with a chronic illness.  Times when "all you do is think" as a Cowboy from New Jersey once put it.  So this is a way to give life to all the mish-mash that wanders into my head, and it feels good to see it come alive.

I'm glad that so many people take the time to read this stuff - and I know sometimes some of it can be a little depressing or sad.  I've gotten some really genuine letters and phone calls from friends and family that start with "Well, I read your blog....".... heh.  Sorry, I don't mean to make anyone worry but sometimes, yeah, things aren't so pleasant in my life and I like to talk about it.  Getting your feelings and assessments on the situation when things aren't so great is a good way to cope and move on.  Sometimes what I write is going to be silly and funny, because most of the time - that's who I am.  But, I suppose, sometimes it's going to be sad, wistful, and introspective - because I always feel that way too.  Being human is a strange dichotemey at times: learning to balance the light and the shade is what it's all about.  To me, anyway.

So, I just want to say thanks to all who checked in with me after my last entry that I wrote in the middle of the night.  Though nights like that happen more often than I'd like, I'm still going strong and will continue to do so.  Being strong and living with this means embracing the fact that I'm going to have struggles and hard times.  Getting through it feels pretty good, though.

So, the wait for a kidney continues.  Thanks for reading - and for caring.

~Steve

Another Middle of The Night

It's the middle of the night, and I can't sleep.
Pretty common for me.  I haven't slept right in years now.  Kidney disease will do that to you.  I kind of just accept it now that I will never sleep for a restful amount of hours in a row.  Sometimes I mind it; other times, I kind of enjoy the stillness of the night.  I'll sit, in the dark and watch the room come alive as my eyes adjust to the darkness.  Everything cast in that bluish hue the night brings, and I find myself in a small place in the world.

Sometimes my thoughts run, sometimes I think of nothing at all.

But always, the stillness.  The semblance of peace.  How I long for peace.  I yearn for rest.

I get none.  I haven't in years.  Always something burning in me.  My body never feels right.  Recovered.  At rest.  Why?  It's working so hard to keep me merely alive, I suppose.  All my systems that work are running so hard to compensate for not having kidneys.... they never get a break.  The fact that I'm still alive and functioning at any capacity is a great miracle.   I suppose I might tough, composed of a strong constitution - but I don't know.  I'm just me.  I just do what I do, and I keep on doing it.

But I don't know how long I can cruise on like this.  I don't know how much more I have left.  Probably quite a bit, but significantly less than I had when I was twenty-four and diagnosed with this.  People wonder why I'm a bit different these days.  Slower.  Less Active.  More forgetful.  Well, I suppose that living without kidney function for almost nine years has rendered me down.  I'm only human.  We're pretty amazing and resilient, but we have our limits.  Pushing myself to mine is all I have left. 

I'll never get "better".  I can only hope for a respite for some time with a transplant, but even that has a shelf-life.  Hell, I've already had one transplant.  I'll reach my mid-thirties and have, hopefully, had two organ transplants.  That's TWO foreign organs that will have been implanted in my body to keep me alive.  Two miracles of modern science.  Had I been born several decades earlier, I would have just been a sad obituary of a young man who died tragically in his twenties without doing anything of significance. 

I'm amazed at the time we live in.  As humans, we're beginning to unlock the powers of science and technology to improve the quality of life and to combat illness.  Our medical technology is pretty incredible, but in the great scheme of things we're still in the infancy of discovery.  I can only imagine how they'll treat a disease like mine in 100 years.  100 years ago, the thought of a machine that could perform kidney dialysis was something out of Jules Verne.   Today, it sits in my living room.  Tomorrow, we may be able to use stem cells to regrow damaged organs for use in our bodies.  It's all pretty amazing - possibility.  And I'm excited about that and the future of the care of the human race.

But, all the dreaming and possibility doesn't help me now.  And now, I'm just a broken shell of a person, scrambling along - day to day, waiting and hoping for an organ.   And getting a transplant is no picnic, either.  I have to have surgery - they'll cut open my body, and implant the organ just below my abdomen.  I have a big scar from where they did it last time - I will have it again.  I will have a large, painful wound that must heal over a length of time.  I must monitor the condition of my kidney and test my blood constantly.  Sometimes I think people just think "Oh, you get a transplant" like you pick up a pizza.  It's pretty involved, and it's a lot of work.

But for now, I sit in the dark in the middle of the night.  The glow of the monitor lighting my arms and hands as I type this.  My right arm is still a little sore from where the dialysis needles were just a few short hours ago.  Tomorrow, they'll go back there again. 

Hopefully,soon, I will find my peace and I will take my rest.  And then I will get up, and ride this train called life with reckless abandon and deep sense of love of life.

~Steve

Blessed by a great event

So, it was a hot and sticky day for Steve-Stock!  But a whole lot of my friends and family made it out to the venue.... listened to some music, and helped Jordan and I raise some money to cover the costs of the medical bills and such due to my kidney failure. 

What a day.  Seriously.  I saw so many people I hadn't seen in years; hugs, talks, handshakes abound..... it was a serious outpouring of love.

It really helped bolster my spirits - though I feel like I should have talked more about my disease and what it does to me.  People STILL, after seven years, have little idea of what the kidneys do, why they're important, and the effects of the disease on me.

I know it's hard; we live in a world where everybody's got their own crap to deal with.  Sometimes, though, it makes me sad that people I'm close with don't know anything about what I'm dealing with.  People know that I "need' a kidney transplant, but they think that's some kind of cure.  Which it is not - it's just a better form of treatment than dialysis.  I will always have kidney disease, and that WILL be what ultimately kills me. Probably at a younger age than I'd like.  Dialysis is a COMPLEX procedure.  You don't just do it, and go on your way - like taking a pill.  Not having kidneys and requiring dialysis means that your blood doesn't clean itself and you don't make urine.  Some people are surprised to find out I don't make urine.  That I haven't peed in almost four years.  Imagine drinking a nice, tall cold drink - and then simply going to pee later.  It's a great relief.  I do not know that feeling.  I get what I can ghost-pee syndrome, where I feel like I have to go - quite badly, but nothing happens.  It's like an intolerable itch you cannot scratch. I also get the old "You don't look sick...." line.  That's common with kidney patients; aside from a little bloating from water retention, a lot of times we look normal.  But we feel like crap. Plus, when people see me in public, it's merely because I feel well enough to be seen.  Which isn't often, when your blood is filled with the wastes it normally excretes.  I'm tired a lot.  I trudge around a lot because I just don't have the energy to walk, head high with gusto.  It sucks.

I hope everyone had a good time, though.  The bands were great, the food was great, the items for the auction were spectacular and everyone who came out to help was amazing.  I truly have some great friends out there.

I don't ever want to throw another benefit, though!  The stress will kill me!  But maybe when I get a kidney, I'll throw a party as a thank you to the peeps that came through for me during Steve-Stock.   That would be fun.  Except this time, I'll throw the concert outdoors in a park or something!

~Steve

The Eve Of Steve-Stock

Tomorrow, some friends of mine are throwing a benefit for me called Steve-Stock.  We're raising money to help cover the costs and bills incurred from my kidney disease and for the upcoming (hopefully!) transplant.

I must say, the whole thing has been an amazing experience.  So many people have come forward to support me - so much so, that I'm somewhat emotionally overwhelmed.  In a good way.  You hope that you've lived a decent life in spite of circumstances, but you never get to see it until you look at the quality of your friends.  Mine are of the highest caliber...... and I think I must have done something right in this life.

Thank you all. 

~Steve

What will life bring?

Wow. 

These past few months have been kind of crazy.  It's amazing how life can seem to drag on and stand still for so long, then all of a sudden a few things happen and suddenly the world tumbles to life again.

This whole upcoming benefit for me is crazy - crazy good.  I'm so humbled, really, by the outpouring of support.  People have come out of the woodwork to lend their good wishes to me, and it's incredible... sometimes it can seem like this world is a horrible place.  Bad things happen to good people.... good things happen for bad people.... life marches on mercilously... we worry about so many things... but it amazes me how people really can be loving, caring and supportive in massive amounts.  Yeah, there may be some crappy things in this world - but there is good.  There are good people, and lucky for me - I seem to have befriended many of them.

I really can't find the words at times... I get all quiet and shy about it.  Then I worry that people would think I was stuck up about it all or taking it for granted.  But that's the furthest from the truth.... I'm so overwhelmed.  It makes me want to go out and do good things for people... it starts, however, by being good to the people around you.  You can't save the world if you can't help those closest to you.  Or just people who are in your life everyday.  I try to remember to treat those around me and in my life well.  I'm not always perfect, but I try to remember that you catch more flies with honey than vinegar.

So, yeah, the benefit.... amazing.  And, I hate to admit that I need help, but it'll help so much.  Bills pile up... getting back on my feet after getting a transplant is going to be an arduous task.  But I'm really aching to go back to work - to do anything.  Just get out there, do something and earn my keep.  You get really plowed under financially when you get diabilitatingly sick like having kidney failure.  I don't want to be extravagant, but I'd like to be able to do the American Dream thing - new car, house, etc... I'll get there.

Also, spending another week in the hospital just reminds me of how fragile I can be.  I'm really tough for some reason, but it can be just a little thing like an infection that puts me in a bed with an IV for a week.  I feel like I'm a pro at being a patient.

And getting the call?  I'm waiting for the next one with such hope.... Jordan's waiting with so much hope.  That girl gives me so much..... I couldn't do it without her.  It's so funny.  When we started dating, I was so scared of her leaving because she couldn't handle my illness.... and I understood that.  It's a lot to put on someone.  But she wore than mantle.... maybe better than I have.  She's never stopped believing in me and loving me.  Even when I'm at my most miserable, mean, spitting, yowling, needing dialysis bad, bleeding, puking, dizzy..... she's stood there, wiped me off - reminded me of how strong we are and she pushes me to keep the faith.  I believe in us more than I've believed in anything else in my life.  The girl is my best friend.  And I love her.  And that's the most incredible thing I've ever known.

So, we wait.... what kind of future will the transplant bring me?  Will I be the man I've always wanted to be?  Active?  Responsible?  Capable.... Happy?  Will it work well this time?  I don't even remember what it feels like to feel good..... I wonder if I'll bound around like a Tigger when I get this kidney.  Will I bounce off the walls?  Can you stop me?  Can I stop myself??  I don' know.... but I'm so damn excited to find out.  I need the change.

And, after the transplant, I'll still require a lot of immunosuppresant drugs to fight rejection.  I'll always be kidney boy for the rest of my life.... but, dammit, it's my life and I'm going to live it and live it well.

~Steve
 

Any Day Now

So, I didn't get the kidney last time.  But I got a call!

A glimmer of hope!  After four years!

I almost forgot what real hope feels like.  You glide along in this "maintenance" mode for years just to get by.... I mean, I've been on auto-pilot for years now..... but this.... I could get another call any day now, and the prospect of that is exciting.

I just wonder what life will be like post-transplant; will I have complications?  Will I get a reprieve, and live a "normal" life?  What will I do with myself?

The future is wide open - and full of possibilities.  Some of that is scary, no doubt, but I've got so many aspirations I can't be held down.

Soon.  I can feel it.

~Steve

Getting "The Call"

I was up early this morning - I got into the shower around 7 AM.  When I got out, my phone was ringing.  I saw the number on the caller ID - It was the Transplant Clinic.


Oh.  Man.

I answered, and Ellen - my coordinator - said "Your number's come up!  You're a backup for a kidney we've got, but we need a current blood sample to cross match!"

My heart hit the floor and then the roof....  I told her I'd be there in a few minutes, as I lived down the road, and I woke up my wife, who almost fell out of bed with excitement.  We got ready in a hurry, and raced down to the hospital.

We waited in the lobby of the clinic; there was a little girl in the waiting room, too.  She was probably about 8 or 9.... just a sweet little thing.  I heard the excitement in her and her moms voice - they were waiting for a kidney too.  That poor little girl had a bunch of surgeries, she said.... I know how much I'm suffering from this, but at least I had my childhood.... this poor girl.... my heart just bled for her.  I hope she gets a kidney too.

So they took my blood, and said they'd know if I didn't cross match in about 4-6 hours.  Ellen said she'd call me either way to let me know.  I'm still waiting right now, and though I was cool about it all day - it's consuming me now.

Waiting is crazy.  But the hope... the possibility..... my life could change...... I'm hoping.

~Steve

The Gift of Friends

Recently, a group of friends came together to organize a benefit for me and Jordan - they're calling it "Steve-Stock".  Yesterday, we had a meeting to decide such things as a venue, music, food and prizes for a silent auction and raffle.

The whole thing completely amazes me - a lot of people from my past, folks I haven't seen in years, came out to support the thing.  It really looks like it will be a fun an amazing event.... but more than that, it's really touched my heart.


You often wonder if you've done the right things in life - life is full of choices and "what-ifs" and I have more than my fair share of them.  But the sheer amount of people that have come out to support me, and say wonderful things about me..... well, it makes me feel like I've done something right in my life.

I really can't say thanks enough, or even express how I feel.  Life has been pretty hard for me for the last few years, and I've been doing my best to shine on and keep moving for a better future.  But it's hard.... and along with my body failing, I find my spirits falling every now and then too.  This was just a huge karmic boost.

Thank you to all the friends and family who've supported us.... and to those who will support us in the future.  I promise you, that when I become more stable - and hopefully more healthy with a transplant - that your faith and support in me will not be in vain.  I do feel that my life is a life worth living, and your support of me strengthens that resolve so much.

Stay tuned for more info on Steve-Stock - if you want to donate, give a gift, help out, etc.... I'll have more information soon.


~Steve

Controlling the Anger

Being human means getting angry sometimes.

It also means feeling other less than desirable emotions, such as jealousy.  As a man on dialysis and waiting for a kidney transplant, I do have a lot of anger and jealousy to deal with inside of me.  I can't deny that; I try, for the most part, to keep a positive attitude and a sunny disposition about my life.  There's so many great things in it, that for me (fortunately) this is probably easier than for some.  Dialysis patients can be some of the most angry, ornery and easily upset people in the world.  In fact, we get a bad rep for this - and sometimes, it's heartily deserved.

Living this way, though, is tough - life on dialysis (and even with a transplant) is about maintenence, not a cure.  I will never be cured of this problem, and it will plague me until the day that I die.  No respite.  When you get told that at 24 years of age, you get real angry real quick.  And, man, I have my moments.  They're few - and mostly private, but I know there's a few people out there who've been with me when I've broken down.   And I feel like my whole world crumbles when it does.  I've had some awesome friends pick me right back up, though, and guide me to the things about myself that are pretty excellent.  When I got married, each and every one of my Groomsmen were one of those who helped me see the light when I was sick.  I had EIGHT groomsmen.  Heh.   I really couldn't have done it without those guys.  Or my wife.

I get jealous too.  A lot of people get jealous over what "they don't get" or "they don't have".  I'm the same way - though I pine less for material things, and I'm jealous that I don't have my health.  I get jealous when I see people I know abuse themselves in all kinds of crazy ways, go to sleep, wake up with a little headache - but carry on.  Slightly miserable, but eventually it wears off.  What.... I wouldn't..... give.... to be able to to that again.  Whoa.  I get jealous of their ability to just pick up, go and do something...... where as I must be on some kind of regiment at all time, as I have to do find several hours everyday to do dialysis - and I must really be home to do it.  Sure, I can travel with lots of planning - but I couldn't get just say, tomorrow, let's go on a trip!

I covet that freedom.  I know a transplant will help with that.  But I'm angry.  I've been on the list four years.  Four.  Years. of my young life.  My prime.  Wasted away, blowing in the wind, waiting for that miracle hand-out.  Four years of waiting, with my cell phone in pocket - hoping that I get a call that tells me "We have a kidney for you."  Four years of yearning to be the best person I can be - and always feeling like I'm falling just a few feet short.  Yes.  I am angry about that.  But I put that away after a musing, because holding on to that anger will not change anything - and if I wallow in it too long, it will become me - not just a part of me.  And I don't want to be that bitter, whiny, angry dialysis patient.  I've seen too many of them, I've read too much of their whining, and I know I don't want to live to be that person.

So, I wait.  I wait, with patience and dignity - but I'll tell you, if they don't get me a kidney soon.... I'm gonna do something stupid, like poop in the middle of the ER just to get some attention.


~Steve

Me and My Guitar

Anyone who knows me probably knows that I play guitar.  For many years, it was my constant companion - a beat up, low-end Fender Acoustic Guitar used to go with me pretty much everywhere - and if I wasn't playing that, I was playing my old Stock-Modified Red Fender Stratocaster.  I was give the Acoustic Guitar for Christmas when I was 15, and the Strat when I turned 17.  My father was an enthusiast - he played himself.  Some of my earliest memories are him playing his 12-string guitar around the campfire - I knew all the words to American Pie before I could write them all down.

Sadly, in the past few years, with my declining health, it feels like I don't get to play as much as I used to.  Or, and this is hard to admit, the spark (or want) to play hasn't been as furious as it was in my youth.  I think I had most of the fire sapped out of me to fight off the effects of my disease.  But, still, deep in my soul - I still burn for the music.  I can feel it in my body - almost like a source of energy that flows through me.  On those night where I'm "on", it's almost as if a luminescent entity is flowing through me, into my forearms, and into my fingers.  I can feel every tendon in my hand snake up my arm, and they dance in this odd tango as my fingers press against the fretboard.  I love the feeling.  I can't explain fully, but at best I'd say it makes me feel connected to the human experience in a way that is so different from life.... it's almost like a waking dream.

So, I pulled out my old guitar from it's case today - this one's a beautiful Martin Guitar - again, given to me by my father.  I received this guitar on my 25th birthday.... five months after I was diagnosed with ESRD and started dialysis for the first time.  I didn't know if I'd make it to 25.... and it was a beautiful gift.  This guitar has been with me through all the ups and downs of my journey with transplants and dialysis.  I think that when I get to a better place beyond this, that guitar is finally going to tell all its stories.  All the moments I haven't shared - the pain, the doubt and the fear that comes with being chronically ill..... yeah, I have the feeling it's all in that guitar.

Last year, my wife and my father in law scoured the internet and newspapers to find me a guitar I've long dreamed of owning.  They found it, and my Father in Law drove to PA to get it... he surprised me with it on Christmas.  He said "Steve, can you take a look at this guitar I got for Jeremy and tell me if it's any good?"  He handed me a soft-case with an electric guitar in it.  I opened it, and saw it was a '72 Fender Telecaster Thinline Reisssue - in wood finish.  The very guitar I'd longed for - and pointed out everytime we visited a music store.   First I thought "Oh, man, Jeremy is so lucky.... this is my dream guitar...." then I noticed the tag that said "To Steve".... I almost broke down right there.  Again, I was gifted with such an amazing instrument.  It's become my main axe for the past year, and I love playing it.

I can trace so many amazing moments of my life through my guitars.  I've met and bonded with amazing friends because of it.  I first met the girl who became my wife one night when I was out playing my guitar.  She loved to hear me play.  It's been with me on road gigs - it's been with me to camp, it's been with me when I was alone, it's been with me when I was surrounded by family.   There's so many memories tied to it.

In a way, my guitar has been my best friend.  It's given me so much more than just the music.  I love playing it, and I love playing it for my friends and my family.  I've been blessed with enough talent to make it sound good some nights, and I'm thankful for that mystical gift.  Who knows why people are good at certain things, but I'm glad that playing guitar was one of my gifts.

~Steve

Five Way Swaps

A friend of mine just posted a link to an article about a "Five Way Swap" Organ donation in California that took place recently.  Basically, it was a chain of people who all needed transplants - and had donors, but their individual donors didn't match them - so, they all "swapped" with each other, so that everyone got a transplant from a donor that matched them.

It's crazy stuff.  I'm happy to read about stuff like that, but I saw that one of the patients was 65 years old and had been waiting for five years.  I guess part of me is jealous - some that someone who is in their 60's can get a transplant, and I'm barely in my 30's, and have been waiting for a new kidney since I was in my twenties.

I just remind myself that life isn't fair; it never is.  There are worse and greater tragedies in the world - still, a piece of you can't help but be jealous for someone who gets the opportunity to live a better life.  A life off dialysis.

My waiting continues - I really hope this is my year.  I do have a feeling I'll get a transplant this year.

~Steve

Missing.....

I love it when Spring comes back around.  I really feel the life returning to my veins and there's a charge in my soul.  Makes me feel good - makes me feel alive.  Feeling alive is probably the best thing you can feel, especially when you're chronically ill.

It's been a really hard several months for me.  Really hard.  Probably harder than anyone realizes - including myself.  I have a pretty tough exterior - or at least I seem to give off this impression that I either don't care about anything or everything kind of bounces off me.  It doesn't.  It's been so hard - it's pushed me to the limits of my existience both physically and emotionally.

And it makes me think about that unsavory topic that looms like a shadow over me: dying young.  In a way, it could happen to anyone - but for me, I could turn an unexpected corner in a second and all of a sudden - I'm gone.  I suppose I could handle it.... I'd be dead.  But I would be sad.... sad at everyone I'd leave behind and the things I never got to do.  I'd be sad for all the unfufilled dreams in my life - Jordan and I have plans, you know.  It's funny; I never had those "grand" plans to take over the world.... for a small time in my life, I would dream about what it might be like to be famous for playing music, or making movies or something.... but now, my greatest dreams are just to be happy and healthy with  my wife and family.  I just want to live out the rest of my days in modest comfort and happiness - the simple American Dream.

And, so of course, I think about my own mortality - and it makes me think of all the people in my life I've lost along the way.  And how much I miss them.  Like, at this time of year - it's Lent.  I'm not a very religious person at all, but my Grandpa Alexander was a good Catholic man.  And I remember, so many times, going to some Lenten Fish Dinner with him, my Grandma and my parents in some church basement.  My Grandparents seemed to love those big group Church dinners.  We went to a lot of them when I was a kid.  I was always intrigued by them, not because the food was ever great (I'm not a big fan of fish or seafood!) but I always loved running around those old, weird Parish basements.  There was always other kids, and lots of "old people".... who always just seemed to be chatting on.  It was usually a lively event - far from the stuffiness of being dragged to Catholic Mass.  And my Grandpa always saw multitudes of people he knew - he seemed to know everyone, and everyone knew him.  Someone was always calling out "Bob!" or "Robert!" and my Grandfather would greet them with his giant hands in a friendly handshake. 

Sometimes I'd think getting dragged out to those dinners was such a hassle.  Now, I'd give anything just to be able to sit down to have a meal like that with my grandparents again.  Sigh.  That's the thing about getting older.... you really come to appreciate the things you took for granted.  It's such a cliche, but it hits my heart so tenderly now - especially when I think of my mortality.  I wonder who's going to miss the little moments with me, and I get sad that I might let them down that way. 

And it makes me think about how every one of my friends, no matter how intense our friendship, has a litttle moment and place in my heart.  And I treasure those places - and I know that out there, there's a lot of people who have a little place for me in their heart.  And that makes me incredibly happy - I feel very fufilled in that respect, so if I had to go tomorrow - I'd know I did at least a few things right in this life.

Warren Zevon has a song he recorded for his last album, "The Wind".  It's called "Keep Me In Your Heart A While" and it's a really beautiful song about leaving.  It makes me cry when I have to listen to it, but it's really worth it.

~Steve

Got to admit it's getting better all the time

Things are happening.  I can feel it.

I've been feeling much better since the blood transfusion.  The transplant center called and asked me to get a dental clearance and a PPD test. These are good things, because it could mean a transplant is around the corner.  I'm crossing my fingers and holding out hope - which is something I haven't done in a while.

With the weather slowly getting warmer and the snow melting, I can feel strength and life returning to me.  It's amazing how the cold and winter weather just saps the life from me.

Jordan and I have made it through another winter, and I won't say that it was easy.  But thank God we have each other.  Well, I'm thankful for her for so many reasons - and I hope she's happy to have me.  We've been fortunate to have each other through this.  

So, I'll try to keep this updated - like I said, I feel things could happen!  I'm so excited!


~Steve
 

Riding the Wave

So, I've tried to take this month and recouperate as best I can.  I guess that I was much more ill than I let on - I have that problem.  I tend to solider on and power through things without really letting on how bad I'm doing.  After I got my blood transfusion, I started to feel much better.

I'm still having a lot of problems with my bowel disease; I'm still having bleeding and such.  My GI doctor is stymied, and he wants to refer me to Mt. Sinai Hospital for a second opinion.  I know I'm going to get smacked for this by my wife, but I really don't hold out hope that they'll be able to do anything for me or tell me anything that the doctors I've seen haven't told me.  To really treat this, I need a functioning kidney that can regulate the fluid level in my body... dialysis is literally killing me - ripping apart my insides.

I've also been on dialysis now for four years.  That's four straight years.  Four years of my young life.  That's an entire trip through college.  (If you're not me.  I stuck around that bad boy for a few more years than I should have!) 

I mean, a lot of wonderful things happened in those four years - I managed to get married to a girl I'm just crazy about, and I got to play a lot of music, make a movie with my family.... I've managed to live as well as I can in those four years.  But it's been four years of being on that waiting list - the ache of hoping I get a kidney.  It's so morbid, when you have the thought in the back of your head "I hope someone died today and donated their organs - and I'm a match....."  I used to hold my phone a lot, waiting for "that" call.  I don't any more. 

Well, I hope I feel better.  I think Spring will do me good, and it's right around the corner.  So much to do, so little energy to do it with..... sigh.


~Steve

Gaining my bearings....

So yesterday I went into the hospital and got my blood transfusion.  We did it in the acute dialysis unit at a local hospital - I got two units of blood.  Yeah!  Vampirism is IN baby.  But seriously, I think it really helped a lot.  My hematocrit level was amazingly low - most people who have number as low as mine are being pushed around in a wheelchair to an emergency room. 

Because we do home dialysis, we use what's called "the buttonhole technique" on my fistula.  For those not in the know, the buttonhole technique is where you use 15 gauge needles in the same spot, using the same angle, over and over until it builds up a "track" at the sites, which allows you to use "blunted" tip needles.  This is supposed to extend the life of your fistula - but the same person who "sticks" you with the needle has to do it every time, in order to preserve the integrity of the established tracks.  That person, for me, is my wife - so she came along yesterday and I was going to have her put the needles is for me, and then the staff at the acute unit could put me on the machine - and we'd all be happy.

However, when we arrived yesterday - they made the biggest stink about her doing it.  She was, in fact, treated rudely by the staff - my wife is my biggest supporter and advocate, and I hers - we stood our ground.  Eventually, they called my dialysis people who said "Let her do it!"  and then they called my nephrologist who said "Are you crazy?  Let her do it.  She does it everyday."   Finally, begrudgingly, they let her.  Two seconds later, my needles were in and ready to go.  Sigh.  Bureaucracy.  Paperwork and procedure get in the way of everything.

Anyway, the treatment was fine - I got my two units of blood, and Jordan stayed with me the entire treatment, and I went home.  I was beat from the dialysis treatment, but I noticed I wasn't extremely winded as we walked back to the car.  Which was awesome.

Hopefully we can keep my levels up - I can't function when they're so low.  Well, I guess I can function, but I feel like I'm moving through a giant container of Jello. 

Losing your "sharpness" of mind and body function is one of the most damning things about being sick.  But that's a topic for another entry for sure.  Right now, I'm just going to work on getting the best out of this blood transfusion.  I hope I don't start to like "Twilight" or something now.


~Steve

Getting a blood transfusion

So, I've been having problems with this internal mucosal prolapse ulcer that bleeds in my colon.  It developed because of all the hard, dry stools and straining that I've been doing.  Dialysis sucks all the water out of your body, and often constipation is the result.  Mine just developed into this headache that's been ruining my life - and there's little that can be done for it until I get a kidney transplant.  Oof.

So, anyway, it looks like it's been bleeding a lot again, because my hemoglobin and hematocrit levels are critically low - and I have to go in the hospital to get two units of blood.

I feel fine today, but earlier in the week I wasn't feeling well at all - so hopefully this will help me to feel much better.  I'm just sick of having to deal with all this stuff, and it making me feel like crap - and useless.  I feel so helpless and useless when these conditions just tire me out to the point that I can barely do anything.  I hope this helps.


~Steve

Winter and Cabin Fever.

Ever since I was diagnosed with ESRD, Winters have been hard on me.  It's funny; before I got sick, I was the dude who still wore his cargo shorts in winter.  I didn't mind the cold - but with the severe anemia I suffer from, the cold just stops me dead in my tracks.  I really tend to hibernate.   I don't like to leave the house unless I have to, and I'm usually bundled up in a few blankets around the house!

So I try to use the winter to indulge all the projects I like to do indoors - I've spent some time trying to keep up with my writing, and working on some ideas for short films I want to shoot later in the year.  I also run a small independent company that makes video games, so that eats up a lot of my time.

But still, you get cabin fever - especially when you do dialysis in your own home.  I'm waiting with such anticipation for the spring and warmer weather.

On the health front, in the next month, I think  we're going to start applying to other centers for transplants.  I think a fresh start in a new center is what I need.  Hopefully we can get the ball rolling on a transplant for me.  I desperately need one.  It's getting so much harder, day to day - I read stories about people dying while on the waiting list for organs, and I get really scared that I could become one of those statistics.  It scares me because I've got so much more living to do - I've got so many things left to do.... I don't want to get off the train while I'm just sitting around, waiting.

I know it sounds morbid, but it is a real fact and concern in my life.  I really am one of those people who's waiting for an organ, or I will die.  That's a hard fact to live with, but it also motivates the hell out of me to stay alive!

~Steve

The Cost of Dialysis

I've been on dialysis since 2003, and yet in all those years, I'm still amazed at the cost of treatment.

We do get decent health care for ESRD in our country, thankfully - but this disease is no joke.  ESRD is an automatic qualifier for Medicare, and most patients can get Medicaid as well.  I get an itemized list, however, every month from my Medicare service provider, and it's amazing the cost that goes into keeping me alive.

Here's a sample of some costs.

9/01/10-9/29/10

Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26

Claim Total                $55,945.40


Syringe w/o needle(A4657)                      $41.99
Syringe w/o needle(A4657)                      $41.99
Syringe w/o needle(A4657)                      $41.99
Syringe w/o needle(A4657)                      $41.99
Syringe w/o needle(A4657)                      $41.99  251.94
Syringe w/o needle(A4657)                      $41.99
Epoetin Alfa (EPOGEN) 100 units ESRD (q4081)    $7,372.00
Epoetin Alfa (EPOGEN) 100 units ESRD (q4081)    $7,372.00
Epoetin Alfa (EPOGEN) 100 units ESRD (q4081)    $7,372.00
Epoetin Alfa (EPOGEN) 100 units ESRD (q4081)    $7,372.00
Epoetin Alfa (EPOGEN) 100 units ESRD (q4081)    $7,372.00
Epoetin Alfa (EPOGEN) 100 units ESRD (q4081)    $7,372.00


Claim Total - $44,483.94


10/01/10 - 10/31/10

Neprology Associates of Syracuse - 1.0 ESRD home pt, office visit                              $425.00



That's just an average month of dialysis costs.  I am exteremly anemic, and the Epogen helps build my redblood cells and keeps me from getting tired.  I'm on a lot of it, and as you can see - it's VERY expensive.

People with ESRD are lucky enough to get decent care here, but there are still fights and arguments over it all the time.  Arguments over quality of life, the quality of lives saved.  I can tell you one thing, at least for me - I don't take all this health care for granted.   I'm going to live through this, and be the best and most productive member of society I can be.  So, to those of you who work hard, pay taxes and bitch about having to pay for other people's health care, remember - there are people out there who are (trying) to be decent citizens, and we DO appreciate the hard work and sacrafice you contribute to help keep us alive.  If you ever feel bad about it, and you're friends with me, know that in a way you're helping me.


~Steve

Wait, cancel that.....

Well, we're not going to Florida this week.

Too many snafus with setting up dialysis care while I'm there - so we're postponing the trip until we can organize it up better.  Such are the pitfalls of being on dialysis and wanting to travel.

In other news, I'm feeling much better lately, and it looks like my red-blood cell count is rising.  So, still good news on the horizon.

Soon, though. we'll taste that Florida Sun.....


~Steve

Getting Ready To Travel

Well, the wife and I are going to Orlando, FL, next week.  We're getting ready for the trip - and there's a lot of work that goes into it when you're on dialysis.

I've not traveled so far while on dialysis, or been on a plane in years!  Making sure we get the machine and all the supplies there is weighing heavily on my mind, but I'm taking it one step at a time.  I gotta admit, it's causing me some anxiety - I'm the kind of person who likes to make sure all the details are taken care of.  But I'm excited at the proposition of adventure.


I really long for the time where if we want to go away, we just pack and go! 


~Steve

First Night

January 1st.

2003 - the first day I ever did dialysis.  I was in the ICU.... they had just put a "port" in my chest, and hooked me up to this weird looking machine next to my bed.  Soon, the tubes from my chest ran red with my blood, and I was on my way to having clean blood for the first time in a long time.

It took me a few days to recover, but I bounced back pretty hard.  I was out of the hospital in less than a week, and I remember I went to a local bar, and sang "Stayin' Alive" at Karaoke.  I was determined to be strong, do the treatments, and live through it.

It's been a long time.  Eight years.  I spent the first year on dialysis, and then thankfully had a transplant for three.  The last four years, I've spent on dialysis.

And I have to say: it's hard.  And it's been getting harder.  I have to admit that.   The thing about this disease is that it's constant.  There's really no respite.  I have days where I feel better, but my feeling better is probably like your average Joe's miserable day.  It was much easier in those earlier days to power through things, but I really have no reserves left.  Everyday is a struggle - and for many people on dialysis, it's like this.

I think that many dialysis and ESRD patients get frustrated at the lack of knowledge about our disease and the treatment.  Many people don't understand dialysis, or the nature of kidney disease - a lot of people look on it like diabetes - you take a shot or something and you're better.  You "do" dialysis and you're better.  Doesn't work like that.  And sometimes, even I have to remember that.

My last eight years have been interesting - so many people have come into my life and become a part of all of this.  Many have given their time and resources to keep me alive, and for that - I'm overwhelmed.   In a good way.  I just marvel at all the people that come together to ensure my well being - friends, family and medical professionals.  I'm lucky.  I have a giant network of awesome people that keep me alive and bolster me when I need it.  Many ESRD patients don't.

I hope, in the future, I can do my part to bring some kind of positive attention to the plight of ESRD and kidney dialysis patients.  But for now, I'm struggling to make it day to day.

Thanks to all who make my life as great as it is.  I'll see you 'round these parts.

Happy New Year.


~Steve