The Adventures of Kidney Boy

A Journal About Living With End Stage Renal Disease. Dialysis. Transplants. Love. Family. Friends. The Unsung Donor. This is my life, from the end of a needle to the bottom of a pill bottle.

Thursday, July 14, 2011

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

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