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, September 16, 2010

Taking it all too hard....

Let me take a minute here to state that I'm writing and recalling all of this off the top of my own head.  I haven't gone and researched a lot of things, nor talked to a lot of people involved in this.  I wanted to recount things the way they stack up in my head.  Which means I might miss some things, or leave some people out.  For that, I'm going to apologize right now - and know that by the time I'm done writing all of this, hopefully all the details will come back.

I say this now because this period is probably the fuzziest for me.  This was the most traumatic part of my early experience, and the details are still to this day unclear to me.

I woke up from the surgery feeling really awful.  And I mean AWFUL.  I felt like someone had split me open down the middle and sewn me up raggedly.

I looked down at my stomach.  Oh yeah.  Someone DID split me up the middle, and sew me up ragged.  My stomach had been sliced open from the top of my crotch to my belly button.  I had stitches all the way up - and they didn't look to happy to be there.  It hurt, I ached, and I felt like crap.  I was attached to a million different monitors, and I didn't know where I was.

From what I gather, during the procedure, something went wrong.  Somehow, my kidney was nicked/damaged by a scalpel. The procedure was performed by a young attending physician - a guy who was only two years older than me.  To his credit, he stuck around for days afterwords, checking in on me.  To his discredit, the asshole FUBAR'D my kidney.  For reasons unknown to me, and my nephrologist, instead of restricting my fluid, they PUMPED me full of fluids to try and "kickstart" the kidney.  Which didn't work at all.  Instead, the kidney shut down, and I began to retain fluid.  I swelled up like a beach ball.

Now retaining fluid, and having a tender, open slice on the stomach doesn't make for a good combo.  I was feeling like crap, and my Mother was bedside, when I felt a.... pop.  I looked down and saw a small part of my intestines hanging out of my now open wound.  The sutures had broken, and my guts had fallen out.

I hate my guts.  I hate 'em even more when I see them.  However, being so doped up, I was more bemused as I calmly said to my mother, "Could you please press that big red button?" as I pointed to the emergency call button above my bed.

A nurse, obviously upset that I bothered her while she was reading US weekly, came in barking "What?!?  You know you're not supposed to press that in case of an emergency...."

I calmly lifted my gown, showed my gaping wound and hanging intestines and said "DUH."

I don't remember much else, but I was immediately wheeled into emergency surgery, where my transplant surgeon, Dr. Szmalc saved my life and managed to partially save the kidney.

So, there I was.... the doctors waiting to see if I'd make urine again, and we were constantly watching my hanging foley bag.  Eventually, I was making urine again - but my clearances weren't very good.  They'd never be good again - good enough to stay off dialysis, but not enough to maintain optimal function.  And I wasn't making enough erythropoietin, a hormone that helps regulate your red blood cell count - basically, I was severely anemic and I'd require weekly to monthly shots of artificial EPO to maintain it. 

Now, I'm a pretty even guy.  During this whole ordeal, from diagnosis to treatment, to dialysis to transplant, I tried to keep a positive view.  I was patient, for the most part, and I just tried to go with the flow.  When something like this happens to you and shatters your "normal" life, it's pretty easy to get angry and bitter.  But I really wanted to go against that - I wanted to make the best of it, and try to become a better person because of it - and go with the flow.

I really haven't talked about this even until now, almost 6 years later - but the anger and sorrow I experienced with the damage and eventual loss of my father's kidney almost crushed my spirit entirely.  It's a cold, cruel world at times, and life is really harsh.  For all my troubles, there's millions more out there experiencing troubles more deeply.  But I was mad - I was mad at my loss, my time.  I looked down at  the scars crossing my stomach, and I saw the death of hope.  The death of dreams - the loss of not only mine, but my family's as well.  The loss of my father's hopes.  And I almost lost it all.

Almost.  It's easy to walk down that road of dispair - but somehow, I managed to remember that we all knew the risks when we got involved.  That sometimes it isn't perfect - and that things can go wrong, and Oh Lord, they do.  But it's how we keep going - how we resolve to live the best we can in the face of adversity that makes us the best humans we can be.  For me, trying to be the best person I can be is the most noble goal.  I don't always succeed, and I fail big time sometimes.  But I'm always trying to grow and move forward - and progress to be that better man.  A better man wouldn't succumb to the bitterness - he'd allow himself to feel it, accept it, and put it in the great pantheon of feelings, varied feelings, that make up the human soul.  And he'd move on.

The transplanted kidney is still in my body, though dormant, and I can feel it - it's just above my right hip.  I touch that spot at least once everyday, and I don't think of it as the death of my dreams or my father's hope - but rather, the evidence of an attempt by a good man to keep someone he loves alive.  And that's an amazing thing.

The kidney held on for about three years, until it just started to slowly give out.  My creatinine rose slowly over a period of several months, and then I was returned to the chair of dialysis.  But that's a story for later.

I spent about a month and a half in the hospital, in my own private room, recovering.  Being young, I bounced back physically pretty quick.  But my kidney was in rough shape, and they didn't want me to leave until my labs had stabilized to a point where they felt comfortable sending me home.  So I was in the hospital for a long time with little to do.  My friends and family would come visit me - my friend Jessica would come by and watch bad TV with me.  And, in an incident I'll never forget, during the Super Bowl, I was feeling sad at being alone duirng the big game when my friend Pat O'Malley showed up - with a giant platter of Chicken Wings from our favorite watering hole, JP Mulligans.  So I was able to enjoy the rest of the game with a good buddy and some awesome wings.  I'm a big fat fatty, so you know chicken wings were like GOLD to me.  In fact, I was so busy munching wings during half time, that I didn't pay attention as Justin Timberlake ripped off Janet Jackson's boob-cover.  I heard Pat say "I think I just saw her boob...." and I was like "What?"  as Chicken Wing sauce dripped down my fingers....  I have fond memories of that.   My parents also brought my guitar up, and I became known as the musical patient - I sat with my door open, just playing all day long.  Med students would come down to my room on breaks to hang out and listen to music.

I had to drop all of my classes in school that semester - which broke my heart. One of my classes was a class where we studied, built and performed in a traveling production of Shakespeare's 12th Night.  I was to be Sir Toby Belch - but because I was in the hospital, I had to give up my role.  I ended up taking a small cameo as a "musician" who accompanied Feste in the songs he sang.  A real stretch.  But I ended up going to the first performance of the play RIGHT from the hospital.  I still had my hospital arm bracelet on as I changed into my costume.

Such crazy times.  They seem so long ago right now.  Writing this actually stirred up a lot inside me today - so thanks for reading.

~Steve

2 comments:

  1. I had forgotten your fondness for the theatrics. Literally and figuratively. I just wonder how all of your kidney problems started. Did they ever find the cause of the initial failure? Or atleast how one gets renal disease.

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