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