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 28, 2011

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.



Wednesday, July 27, 2011

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

Saturday, July 23, 2011

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!

Friday, July 22, 2011

Wednesday, July 20, 2011

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!


Tuesday, July 19, 2011

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.


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.


Wednesday, July 13, 2011

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!


Saturday, July 9, 2011

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.