Be Glad You've Got....

You know when things are hard in life, and you get encouragement from friends and family that usually sounds like this, "Well, at least you have your health...."

Heh.  I don't - when the chips are down, I don't even have that!

But I do have my friends and my family, and I'm lucky as hell for that.  There's plenty of dialysis patients out there who don't have that.  Either their family relationships were strained before the diagnosis and placement on dialysis, or they became strained after they became a patient.  Often friends bolt when you start dialysis.  I have a great deal of friends who have been very supportive over the years, but I also had a bunch of them who just kinda drifted away rather than deal with my conditon.  I still get friends who ask "So, how long to do you have to do dialysis for?"

The answer, of course, is THE REST OF MY LIFE until I DIE or get a KIDNEY TRANSPLANT.  Once you go ESRD, you never go back, baby!

It gets frustrating at times; kidney disease is a really misunderstood disease.  Most people think that you get it, have a few treatments and you're better.  Acute Kidney Failure is pretty rare, and one can recover from it - but long term, End Stage Renal Failure is permanent.  And you'll always require some form of treatment.  People also think "Oh, kidney failure.... just slap a transplant in and you're fine."  That's another mis-conception.  An organ transplant isn't just as easy as getting it done - it's a lifetime of drug and physical maintenance that must be adhered to rigorously.  It's also not a cure - just an alternate form of treatment.  A transplanted organ will never work as well as your native organs would.  With kidneys, it just works better than dialysis. Also, the anti-rejection meds which you must take for the rest of your life can be pretty harsh - sometimes the side-effects can be really annoying.  Nausea, weight gain, moodiness and fatigue are  some minor side effects. 

Kidney disease changes and takes over your life. And, yeah, that sucks.  Some people ask how I deal with it, but the truth is - I don't have any other choice.  That's just life for me.  Some days are better than others, and yeah - some days, I do nothing but sit on a couch, read books or watch TV.  Other days, I'm a happy, active young man.  I try to balance my time.  I suppose you have to do the best with what you've got, as they say, and though dialysis is a pain in my ass and eats up a lot of time in my day and makes me feel crappy - I do the best I can. 

So, I'm glad for the good things I have - my wife, my family, my friends.... and the fact that I still have zest for life.  I still love to play my guitar.  I make video games for fun in my spare time, I've shot a crazy little move with my friends and family, and I like to write little short stories to amuse myself.  I like to cook.  And, I still do it all - sometimes in smaller increments than I'd like, but I still do it.

~Steve

Thanks

Just a quick thanks to all who've been reading loyaly.  I've been enjoying writing, and I'll contiune to do so.  I've just been very busy the past few days - being active in life and being on dialysis really eats away at your time.

Sometimes I feel bad, because I don't have as much free time to spend with friends and family... lord knows there's a few friends out there I haven't hung out with in forever, and I miss them so much!  But they're all still supportive, and it's amazing how they're there for me when I need it.

I'd say that if I didn't have the family and friends that I have, I'd have never made it this far in dealing with dialysis and transplants.  So thanks, peoples.  I love you.


~Steve

Love and Dialysis Part II

A week before the decision was made to put me back on dialysis, a very close friend of my family died in an accident.  It was a pretty horrible time; I come from a large family and we all came out in support of our lost friend.  I wasn't doing to so well, and I must have looked it because at the wake a bunch of people asked me if I was "okay" and not just in the emotional sense.  I knew my time off dialysis was numbered, but I smiled and pressed on.  Jordan wasn't there with me; we'd been "seperated" and her absence was noted by my friends and family, who asked where she was.  I just mumbled some kind of excuse - I didn't want them to know that I'd messed things up with her and pushed her away.  I knew it was a bad idea even then.

But the loss of my friend, and the comfort of my family made me realize I'd made a mistake.  I know it seems cliche to let the death of someone bring you closer to someone, but add that and the death of a working kidney and you re-evaluate what's important to you.

So, I went back to dialysis.   Back to the good old center off of James street.  I walked in the doors, again, trying to hold my head high.  I was greeted with a "Steven!"  The co-ordinator of the "pod", Frank, came over and gave me a great handshake.  Frank was there the last time I was on dialysis, three years ago.  In fact, there was much of the same staff - and they were all so nice to me.  A lot of "We're sorry to see you back, but it's good to see you!" 

If I can say one thing about my dialysis experience, it's that the staff at St. Joseph's Regional Dialysis Center in Syracuse are awesome.  I've heard horror stories about some dialysis wards, but mine was well run with good, competent people.  I was always well attended to - both physically and emotionally.  I was made to feel like a person seeking treatment, not a number and some kind of insurance code.  When you go through these things, sometimes you feel like you're just a social security number and a husk that fills out forms.

My return to dialysis was a pretty smooth transition.  I didn't have any problems with the treatment, though I did get a little dizzy on the first round.  Also, My kidney was still making urine - and I peed a LOT during treatment, which is no easy feet.  You can't get up or move during the treatment, so I'd have them bring me over a portable urinal, which is basically like a bottle you pee in.  They'd close a curtain around me, and I'd have at it.  I used to pee out about a liter of fluid a treatment, which made the amount of fluid the machine would take off a hard number to come by, so I had some cramping at first.  Now I have the skill of being able to pee in a bottle while sitting down and not getting any on me, so when I get a new kidney,  I plan to use this skill when I go camping.  Now I never have to leave the campfire.  Ha ha.

So, there I was, doing dialysis, on the outs with a girl I was truly in love with, and feeling down about it all.  One day, after dialysis, I walked out into the parking lot - sitting on the trunk of my car was Jordan.  I lost it; we cried, hugged and made up.

She's been by my side ever since.  Through the thick and thin of it all - she's been tough, and right there with me.  I didn't think she could get any more involved with me, my life and my treatment - in a good way.

Then, the opportunity to do home hemo dialysis came our way.  And, wouldn't you know it, the girl insisted on learning how to do it... and suddenly, dialysis came home.

~Steve

Love and Dialysis Part I

Love is a complicated thing.  It makes you crazy at times, and you end up doing things and becoming a person you never thought you could be.  I know I'm not treading any new ground with this revelation, but it's really something you go "Oh!" when it happens to you.  You read about it all the time, but until you feel it - it's just not as "real".

I didn't want to like Jordan as much as I did when I met her.  She hates it when I say that now, and honestly - it has nothing to do with her.  I was just miserable at that time in my life, and honestly, I was being a big baby and wallowing in my misery.  So when I found myself genuinely LIKING a GIRL, I threw a tantrum to myself.

Real mature, I know.

But I remember sitting in my friend David's living room, late night, lamenting "Aw, man... I just don't want to like her.... I'm gonna end up asking her out, aren't I?"  My friends just chuckled and laughed, because they knew I was going to go for the girl.

I figured I'd be up-front about my ESRD with her.... and we'd talked about it at length in our casual conversations.  She said her mother was a nurse at the VA and she'd been around nurses, hospitals and sick patients all her life.  She really seemed to understand all that I was going through.  I used to carry about a large box of pills with me, and I showed her my pill collection - showing off tablets of a drug called Neoral (cyclosporin) because they smell funny.  It's one of those "This smells awful, you smell it..." moments.

Like I said, I didn't give her a call - and we mostly just hung out and conversed when we randomly saw each other at karaoke night.  Slowly, I started to think she might actually like me - but I'd mis-read signals in the past.  I was convinced she just thought I was a "cool-guy" and that I was like "her brother" or her "best-friend."  I'd gotten a lot of that in my life, so I was always wary with girls.  But one day, I went to visit her at her work (she was working at Barnes and Noble at the time), and we really just hit it off.  I'll never forget that day - it's just one of those simple times that's burned into your brain.  Someday, I'll be old and gray and I'll remember the day she wore her orange sweater to work and I came in and told jokes as she put away magazines, and when I left, she touched my arm so gingerly... I got chills.  

So, after hanging out a few times, I finally mustered up the courage to kiss her.  Those first kisses are always awesome.    Suddenly, we were spending all our free time together.  We met each others families, attended holiday functions, and suddenly we were a serious couple.

All during this, though... I was starting to feel worse and worse.  I was getting tired out more easily.  I could feel difficulty in urinating.  I knew things were getting worse.  I was seeing my doctor frequently, and having blood drawn.  My labs were not good.    I was sinking, feeling bad, and becoming really miserable.

It was a dark time for us - though we were a new couple, my health was failing, Jordan had gone back to school to study nursing, and I was pushing her away.  I was losing my kidney.  I would have to go back on dialysis - the inevitability and horrible sentiment of the sentence hung in my mind.  I couldn't put her through that.  She wouldn't want to be with a dialysis patient anyway... though it broke my heart, I broke up with her, and resigned myself to the fact that I'd always be alone, that was my lot in life, and I'd just have to learn to live like that.

~Steve

The End of Summer

The End of Summer always makes me a little sad.  I guess I wait for the season to start for so long - I'm counting down the last few cold days of Spring and Winter - and the warm breezes of Summer hit and I'm excited for a bit.  Inevitably, I take it for granted - and before I know it, Summer's gone.

And when all the Summer places start to close up, I sigh and realize another year of my life has gone by and I'm going back to waiting for it to come around again.  I do love the life that breathes back into the town when Summer comes.  And for the past four years, I've always hoped that Summer would come and I'd be free from dialysis again...

I met Jordan in the fleeting steps of Summer in 2006.  I'd come off of a mildly rough Summer - I'd been depressed about the end of a previous relationship and thusly been kind of a grump during that Summer.  I'd recently got back into playing my guitar, though and I joined up in a little cover band with my friend Ron and our friend Holly, who owned a local Karaoke place.  Holly was about to celebrate one year in business so we wanted to put together a set of songs to play at the party.  It was a lot of fun for me - I love to play music live, and it was a low stress, just for fun kind of thing.  So I was coasting on a pretty good music high around then - during the set break, I was outside getting some air and there in the crowd of people, was a girl I'd seen singing at the place before.  I always thought she was so pretty - and had a helluva voice.  When she grabbed the mic and sang, she did so with such force and gusto.... just having a good time.  But she was always there with this guy, who I assumed was her boyfriend, so I never thought about her that way.  But outside, she was talking, and telling a story about an embarrassing moment from her childhood.  So I did what any third-grade boy would do: I made fun of her.

Don't worry, folks.  It was only some light ribbing.  We ended up just hanging out a bunch more that night, talking and talking like only young folks can do on those waning Summer nights.  It was just nice to talk to someone, and genuinely enjoy myself.  I found her smart, funny, lucid and articulate (which is honestly hard to find these days!) and she laughed at my stupid jokes.  Which, if you know Jordan, is a pretty amazing feat because she can be Captain-Not-Amused.  I also mentioned that I had kidney failure, and had a transplant(it was still working at this point) and she didn't run away in abject terror.  Which really made me feel good.  Anyway, I'll never forget sitting out on a small stoop outside that place, talking and talking to this girl.  I was captivated.  She gave me her phone number, and told me to call her.

I, of course, took the number and didn't call her for, oh, weeks.

I never said I was a genius.  Or am I, because, hey... I did end up marrying her.



~Steve

Mailbag....

I'd like to take this time to thank all those who've been reading, and those who've left comments.  As I said earlier, if you have questions - feel free to ask, and I'll try to answer them.

Rob asked "Do they know what caused your kidney failure?"

Dear Rob,  "This is a good question.  When I tell people I'm on dialysis, a lot of times they look at me like I was some dirty, drunk miscreant who drank his kidneys out of existence.  Well, that's always a bit offensive - if I was a big, dirty alcoholic bum, my LIVER would have been shot way before my kidneys.   No, my kidney failure is much more of a mystery.  There was so little functional tissue left when they found me, my doctor didn't want to biopsy the kidney to see why.  He surmises that it's either genetic - I was born with the defect and it slowly killed my kidney, or another likely scenario is that I had a staph infection which spread to my kidney, slowly damaging it - raising my blood pressure, which in turn damaged my kidney, and the cycle continued until they were dead.  I was constantly diagnosed with other problems, hypo-thryoidism, sleep apnea, depression, ADHD etc.... and many of those symptoms throughout my life were exacerbated by underlying nephritis.  So, I could have lived life as clean as a preachers sheets and things would have still ended up in a dialysis chair.  So sometimes I don't appreciate the judgment that comes when I tell people I'm on dialysis."

Whew!  Well, that's it for this week - if you have questions, send 'em in!

~Steve

Living in Limbo

My recovery was slow.  I went home to my parents house, and took up residence in my old room there.  I spent the next several months just taking it easy.  I performed in the traveling Shakespeare play, but other than that, I laid low.  I hung out with friends, or I went to my brother's apartment to play video games and watch movies.  I saw the doctor quite often; I got used to stopping by the brand new offices my nephrologist opened up, and walking straight in, waving to the receptionist, and going into the lab to get blood drawn. 

I hated needles before I started dialysis.  But when you have to use really big 15 gauge needles on your arms three time a week, you develop a tolerance for them.  It's funny - needles are no big deal for me now.  At one time in my life, though, the thought of having to get shots crippled me.  It's amazing what you fear - and how the thought of something is of greater detriment than the actual act.  I have to keep that in mind every time they mention they need to do some kind of freaky medical procedure on me.

During all my experiences with my illness, I've made friends with a lot of nurses.  I've seen good nurses, I've seen bad nurses, I've seen ones who genuinely care about making someone well again, and others who don't give a crap - they just want a paycheck.  But on the whole, the nurses I've met in this have been amazing.  But you always especially remember the bad.  I'll never forget Gretchen.  Gretchen was an older lady who had obviously gone back later in life to start a new career.  She meant well; nothing she did was ever out of malice.  But she just didn't pay attention!  She was always nervous and figedty, and I remember during the early part of my recovery, I was in a lot of pain - she came in, and pressed the motorized button to lift my bed up - unfortunately, she didn't notice that my foley tube was caught in the bed mechanism.  As they bed went up - my tube got pulled.  Remember, this tube was inserted into my most sacred bits - and pulling on it was some kind of sadistic torture act.  I screamed, and she was like "What?"  My Mom said "YOU'RE PULLING HIS TUBE!"  She stopped the bed, finally, and was like "Oh....."   There was a lot more with Gretchen and my foley tube later too - she took it out too early, which I was happy about - it was uncomfortable, but the doctor made her put it back in.  She wasn't too good at that, and I've explained how awkward it can be anyway.  Let's just say, I wasn't cut out for torture and bondage S&M.  Thanks Gretchen.

But for the Gretchens, there's been my saving angels.  Practically everyone at my dialysis center - they all took amazing care of me.  Incidentally, one of my dialysis nurses there turned out to be my former third grade teacher!  She quit teaching, went to nursing school and started a second career!  She used to tell everyone that I was her former student, and she'd talk about how precocious I was at that age.  And they'd remark how I wasn't so different now!  It made time pass better to be in good company.

Being on dialysis, and living with a bum transplant, is seriously like living in limbo.  I've felt like my life has been "on hold" since I was 24 years old.  Though, honestly, some seriously amazing stuff has happened during my tenure as a kidney patient - the greatest change and "thing" in my life.  I fell in love and got married - love as a ESRD patient is amazingly hard.

I started dating a friend the summer after my transplant - we hung out with our friends, mostly - while she was starting her first real career after college, I was kind of drifting around - only able to work sporadically and part-time - we just drifted apart after almost two years.  I was crushed - I knew that finding someone and dating someone with the codecil "Yeah, I have a potentially fatal disease that can't be cured...." was hard.  When we broke up, I fell into a deep depression.  I spent the next several months after that just being a fool - drinking too much, not sleeping much.  Plus, my labs were slowly creeping up - I remained adamant about staying on my medicine regiment.  I worked hard to keep my kidney, but it seemed like it was slowly slipping away, no matter what we did.  I was feeling pretty low.

So when I met this tall, beautiful girl under a street light outside a little karaoke place, I had no idea that she would be the girl I'd fall in love with, and someday marry.

But, according to her, she had her eyes on me before I even talked to her.  Women always seem to know things before you do...

~Steve

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

It's complicated

I'm a nerd.

Ever since I was a kid, the minutiae of fine nerdery has attracted me - I reveled in my Star Wars toys, I loved my Spider-Man and Batman comics, and I read fantasy literature.  I still love all that - so I was very excited that shortly after my transplant in November of 2003, "Return of The King", the third installment of the Lord of the Rings trilogy, was being released.  I have to admit, in secret, I was worried about my surgery because I was afraid something might happen and I'd not be able to see it (or God forbid, I wouldn't live to see the final chapter of the Star Wars prequel trilogy in 2005!).


So it was with great joy that I could leave the house and go to the theater to see "Return of The King".  I went with my brother - the previous year, we had gone and seen "The Two Towers" together.  I remember that vividly because at that point, I was so sick - but I wanted to see the movie so bad I made myself go. I was miserable during it, and my vision was already starting to get blurry.  I, in fact, DID lose my vision before I was diagnosed.  I remember going to see Gangs of New York in the theatre, and not being able to even see the GIANT movie screen - it was just color blurs.

When you're on dialysis, you're on a fluid restriction - your kidneys don't work, you don't make urine - hence you don't pee.  If you don't pee, EVERY LIQUID YOU INGEST STAYS IN YOUR SYSTEM.  So, if I had two 500 ml bottles of water, that's 1 liter of fluid that just stays in my body - and that's 1 kilogram of weight I gain.  (2.2 lbs.  Every time you pee 500 mls, you lose a pound people.)  So, with my new kidney - I indulged myself on a GIANT movie sized cup of soda.  Sweet, delicious Soda.  I,  in fact, had two during the course of the movie, and I peed each one out.  That's a long movie.  But it was worth it.

Things were going great - I was visiting the transplant clinic twice a week after the transplant, and my labs were awesome.  My creatinine levels were about 1.7, which was really good.  Creatinine is a muscle waste product, and the level of it is often used to measure kidney function.  Normal (off the top of my head) can range from 0.9-1.9 in people.  So I was doing great.  But towards the end of December, the creatinine rose just slightly.  They did an ultrasound and they found that my lymphatic channels hadn't healed correctly, and were dumping lymphatic fluid into my peritoneal cavity - which was putting pressure on the graft and elevating my creatinine.  I was told I'd need to have a small surgical procedure called a peritoneal window.  Basically, they'd cut a small hole so the fluid would drain into a cavity that would absorb it, and I'd just pee it out.  Problem solved.  I was told I'd be in on Friday and out by Monday.  No Biggie.

I had registered for classes to return to school and finish up my remaining three semesters, and I was excited about it all - I was feeling great, I was motivated and eager to finish school, and move on with life.  I told my professors I'd be out for a couple of days, I got my assignments and checked into the hospital.

I didn't leave for almost two months.

~Steve

My New Kidney

While my surgery had been a rousing success, and I was well on my way to feeling better (feeling AWESOME even) my father hadn't fared so well.

My Mother told me during his laparoscopic procedure, something had gone wrong and they'd had to open him up - quick and dirty.  See, in today's surgery for transplants the doctors use laparoscopy to make small incisions, and then using computer-aided surgical tools, remove the kidney with as little damage as possible.  Now, most people have no idea where your kidneys are.  I've included a handy diagram to show you - they're in your torso, towards the back - hidden under a protective layer of RIB BONES.  Not very easy to get at, honestly.  Somehow, during my father's procedure, one of the tools used to perform the procedure malfunctioned and failed.  If they didn't act quick, they'd loose the kidney AND my Dad.  So they cut in, and took it out the hard way.  Which left my Dad in quite an amount of pain.  The day after my surgery, I was up, walking, smiling and laughing and I went upstairs to see my Dad.  He was semi-conscious from all the pain medication they had him on.  But he managed to see that I was doing well, and he smiled.  The poor guy smiled through all his pain.

Man, I was going to owe him big time.  I promised myself I'd at least buy him a Big Mac when he was better.  As for me, I was just thrilled that I was making urine.  I didn't even have to go use a bathroom for the first few days - they had a foley catheter in me, so I just walked around, carrying my giant bag of urine proudly.  I wandered the hallways of the recovery floor, showing my bag of pee to anyone who would look.  It's not often that one can show someone a bag of piss without getting whisked away for being insane, so I took advantage of the opportunity often.

"Hello, Doctor!  Look!  URINE." I would often cheerfully say.

The doctors would walk by, noses in wrinkled disgust until I said, "Aren't transplants the BEST?!?" and then they understood.

Finally, after a few days, a nurse came in to remove the foley catheter.  If you've never had one, getting one put in is embarrassing enough (luckily, this time I was unconscious when it went in!)  but getting one out is usually an uncomfortable experience for everyone involved.  The nurse grabbed me by my tackle and "deflated" the balloon that was inside my bladder - and then gave a tug on the tube that was sticking out of the end of my.... privates.  I grunted as the tube slid out with a sickening thud.  I was sore and swollen down there, to say the least - but in the positive, I felt a little like Ron Jeremy for a little while.  The Nurse, head hung in shame, walked out the room - as I, head too hung in shame, immediately ran to the bathroom - and proceeded to coat the toilet with the thickest coat of pee I could muster.  The glorious yellow bounty of waste removal flowed from my body into the toilet with the grace of a thousand gazelles.  Okay, maybe the grace of a dude who drank too much Ripple the night before - I put one hand up on the wall, sighed, and whizzed away.

I went home a couple days later - it was all still surreal.  I'd been visited by countless friends and family, along with many members of the transplant team - many of whom gave me tutorials and introductions to all the drugs I'd be taking.  I'd be taking A LOT of pills everyday, but who cares - a lot of pills is WAY better than feeling like crap and doing dialysis!  They gave me a huge pill case to hold them all, and introduced me to the pharmacy girls downstairs.  I came to know them really well, as I got all my drugs from the hospital pharmacy for the first few months.

My Dad came home a little while after me, still in great amounts of pain.  The guy was sore as hell - but he put up a good front, and even managed to host friends who came over to the house to celebrate his and my recovery.  We both spent a lot of time in sweat pants the next few weeks, and while I just continued to improve and feel better, Dad was still sore.  The pain meds he was on would make him a little loopy, too - I had a billing problem with my wireless carrier then, Cingular.  My Dad wrote a several page diatribe to them, threatening all kinds of legal action with the attorney general and such.  It was an amazing piece of literature - he handed the letter to my Mom and asked her to mail it out.  Using her better judgment, she didn't send it out.  Later, when he had better control of his senses, he sheepishly said "Did you send that letter out.....?"  We still laugh about it to this day.  My Dad's a passionate man - doubly so when pain meds unbind ya!

My recovery was amazing - I'd never felt so alive.  I had a well-spring of energy inside... it was amazing.  I'd never felt so good.... I was looking forward to so many things.  The holidays were amazing.  My family was so happy for me - and my friends were all amazed at my progress.  I had to stay indoors for several weeks while I recovered - my immune system was comprised, and my body had to adjust. Eventually, I went out with some friends for a big night on the town.  We went out, late at night, to the bastion of late night food and weirdness.  Dennys.  I had to celebrate a new kidney with a dish like "Moons over My Hammy".  Needless to say, it was one the best trips to Denny's I ever had.  I was particularly fond of the time I went to the restroom, went in the stall - peed, and when I was done I let out a "WOOHOO!"  I heard a voice in the bathroom say "Yeah!  I know what you mean, dude. Just don't play with it."  I resigned to keep my celebrations to myself in public from now on.

~Steve

Sookie, Sookie

I woke up with a powerfully dry mouth.

It felt like the Sahara Desert in mouth, and it tasted like a dog snuck in and pooped in my mouth.  Man, I was sore below my stomach, and I could barely move.  I felt a little like I had played a really rough hockey game.  I came to rather grogilly, and suddenly the dryness in my mouth was so overwhelming that I began to choke on my own tongue.  I begged a nurse for some water, but they said I wasn't allowed.  I began to choke so badly, I cried - luckily, my mother was there at my bedside and she got them to give me these swabs dipped in water that I could suck on - that gave me enough moisture to whet my tongue and keep me from choking on it.  I wish I didn't have such a huge damn tongue.

But, suddenly, there I was - aware that I was through the surgery.  The last thing I remember is being in the waiting room downstairs.  I was on a gurney, with IV fluids attached.  My Dad was waiting next to me - and they came for him first.  He grabbed my hand, and I looked him in the eyes.  He winked and then was gone.  They came for me a short time later - and I remember laying on my back, looking up at the sterile white hallway, and the bright lights - thinking about how things would change when we were done.  I was getting my transplant.  I had been on dialysis for eleven months, and it was starting to wear on me.  I thought about how lucky I was that my father was a match and how quickly we got a transplant. 

Like most people, before I was sick, I thought you just lost a kidney and BAM you get a transplant.  Lickity split.  Like they have a stock-pile of them - or that so many people die everyday and they all donate organs so there's plenty to go around.  There aren't.  People wait years for organs.  (As of this writing, I've been back on the Transplant waiting list for almost four years.  Who knows how long I'd wait if my father in law hadn't decided to donate.)  And when you decide to get a transplant, it's not as simple as "Oh!  Here's your transplant!  Lovely!"  You have to go through training and eduction about transplants, and taking care of one is no simple task.  Caring for a transplanted organ is difficult and time consuming - though you still have more freedom than being tied to a dialysis machine.


So, there I was, wheeled into the O.R.  The lights were low, and nurses and doctors ran around, all gowned up.  There was some music playing.  It was Barry White of all things.  I chuckled and said "Low lights....Barry White.... Are you trying to seduce me, Doc?"  The room cracked up.  And the anesthesiologist put the mask on my face.  I took a couple of breaths, and floated off to sleep.

And then we're back to me waking up.  After I got my bearings and noticed that my mouth was dry, I then noticed a large tube and bag attached to my nethers.  I looked inside the foley catheter.  I was full.  It was full of glorious, beautiful, yellow pee.  I've never been so happy to see urine in my life.  There have been times in the past where I pee'd, and I was so relived to do it.... but this.... the nurse came in and said "Oh!  I have to empty it again!  You've been making pee like crazy.  You started making urine on the operating table!"

The operation appeared to be a success.  I couldn't believe it. 

My Mom, however, looked grave. 

"What's wrong?"

"Nothing, honey... everything went great for you...."

"Yeah, and Dad?"

"Well.... there was a complication during the removal...."

My heart sank.

~Steve

Thanks for the ball, Dad, come on let's play....

Now, before anyone starts to wonder "WHAT DOES HE MEAN, HE WASN'T SURE IF HE WANTED A KIDNEY FROM HIS DAD?", rest assured - I did.  Though at the time, it was a really heavy burden and gift to accept - plus, I was scared to have the surgery done.  I suppose the thought of surgery makes most normal people cringe a little - here I was, just getting used to dialysis, and now I had to undergo the steps it takes to get a transplant.

It was all a little overwhelming, to say the least.  I handled it pretty well, I think - mostly by binge eating and crying the corner of my bedroom when no one was looking.  But seriously, I spent a lot of time thinking about it all - I'd spent most of my life just taking, taking, taking from my parents.  And God Bless them, they were usually only too willing to give.  Previous to my getting sick, my relationship with my parents was strained at best - I'd spent several years screwing around, losing jobs and dropping out of college - generally floating around like some kind of dreaming flotsam, and coasting off all their hard work.  I had tried to get my life together, but I was always feeling rotten (we found out later it was because of RAMPANT KIDNEY DISEASE) and I spent most of my time sleeping or lazing about.  It had even gotten to the point where I was "gently" nudged out of their house and lived on my own for several months, until that experiment crashed and burned with the force of a thousand fiery suns.  Yep.  I was the screw-up.

And now, my Dad wanted to give the screw-up a kidney.  Yikes.

We visited Upstate Medical University's Transplant Department in Syracuse, and met the team.  They described what a life with a transplant is like - that, like dialysis, it's not a cure - merely another form of treatment.  A better form, with better results, but one still needs constant medical care and attention for the rest of their lives even with a transplant.  There's a strict daily regiment of immuno-suppressant drugs that keep your body from rejecting the "graft" organ.  The side effects of the drugs can be not so pleasant as well.  And there's always that chance of the dreaded rejection.  They beat it into my head - non-compliance with the drugs will lead to you losing your transplant.  To any potential transplant recipients, I can't stress that enough - and I'm sure your transplant team will too!

So they went over the particulars, and my Dad and my Mom both got tested to see if they were a match.  It turns out they both were, thankfully - but my Mother's problems with slightly elevated blood pressure put her on the sidelines.  My Dad was adamant, though.  To this day, when I think of how determined he was to do this for me - and for us, it brings tears to my eyes.  Being a father is something I have yet to accomplish, but I can only hope that I have one iota of the devotion to my children as my Father has to his.  Sometimes I think about how bankrupt this world can be morally and socially, and I'm so proud to come from the family that I do.  My gift from my father wasn't merely the transplant we had several months later, but the gift of knowledge, love and wisdom.  That and his stunning good looks, I'm told.

~Steve

Soldiering on

So, there I was, in the ICU, with this weird new "port" in my chest, hooked up to a machine and watching my blood flow out of the body, into the machine, and back into me.


I've had weirder moments.

I did start to feel better, though.  It took several days, but eventually, my senses seemed to come back.  And it felt like everyone in the world had come to see me.  Which was really amazing; I'd been very sad and depressed in the weeks before I was diagnosed; I began thinking that my friends and family didn't care for me.  One tends to develop a very negative view of the world and of one's self when they're as sick as I was - so to see such an outpouring of caring was amazing.  It really bolstered my spirits and I often think of that time today when I need a pick me up.

I spent about a week in the ICU, and then I was released.  How do you go home after that?  Everything changed; yet, I had a good feeling about things.  At least I knew what was wrong with me now.  I had returned to college the previous semester, but dropped out towards the end because I was missing too many classes - I was always sleeping, or feeling too lousy to go in and my studies suffered.  I was really upset about that because I'd really wanted to do well in school upon my return.  Because of my medical condition, the college accepted me back for another semester.  I decided to go, because I would keep my health insurance if I was still a student.  So, I started doing dialysis in center, three days a week (on Monday, Wednesdays and Fridays) and going to school on my off days.  It was a crazy time - I think I just kinda flew through it on auto-pilot; it all seems like a whirlwind.  I can't even remember all the classes I took.

Though all of this, I learned how to be a dialysis patient - which isn't fun at all.  I also learned just how much parents will go through and sacrifice for their children.  From the beginning, my Dad worked hard to get me back on my feet.  Now he was determined to donate a kidney to me - only, I wasn't sure if I wanted it....


~Steve

Where to begin?

It's New Years Eve, 2002.  I'm feeling like crap.  I mean, I feel awful.  But then again, I've felt awful for a long time.  I don't sleep well.  I haven't been eating well - not much of an appetite and when I do eat, it's usually junk.  I spent the holidays shaking and nursing a cold, feeling miserable the entire time.  I figure it'll pass.  It usually does.   

These kinds of colds happen all the time to people my age.  We shake them off and continue on.  But why is my vision getting blurry and dark?  I must have some kind of pink-eye infection. 

I have an appointment with my doctor on New Years Eve.  I've been seeing him for the last couple months, but he hasn't found anything wrong with me.  I think it's all in my head - or that maybe I just partied too much.  I mean, I didn't drink anymore than my friends.  Hell, I drank less than some of them.... and I stopped smoking pot because it made me feel so sick and dizzy every time I was near it.  My doctor tells me he needs a 24 hour urine collection, and hands me a giant orange container.  I, of course, ignore it - I mean, how am I supposed to collect my own piss and leave it in a jar, in my fridge, for a day?

I get to my doctor's office - explain that I feel awful and that I've lost my vision. My mother actually had to drive me into the appointment because I couldn't see.  She dropped me off, and told me she'd be back to pick me up in an hour.   They take my blood pressure - 220/180.  The numbers don't mean a thing to me.  I just want them to give me a pill, give me something for my eyes.  I'm told I need to go to the ER.  Now.

But it's New Years!  I've got a party to go to... my friends are expecting me....

I'm rushed out of the doctor's office by some over eager EMT's who strap me to a board.  They ask me if I want to be taken out the back, but I tell 'em to take me out through the waiting room.  Just to freak out the other patients.  I'm mildly annoyed by being put out like this.  I have places to go, and people to see.  Whatever.  I just know that my Mother will probably freak out because she'll get there and wait for a while before she asks about me and they say, "Oh, him?  They took him to the emergency room."  (This was just slightly before everyone and their brother had cell phones. Now, a quick text "MOM!  LOL!  ER!  C-U THERE! LOL!")

What a way to start New Years.  I'm still mildly annoyed as we rocket down the local highway.  I see the roadsigns for 690 West speed off behind us as I stare out the back of the ambulance.  The EMT says he has to put a line in my arm.  I wince.  I hate needles.  (Hah!  Funny now....)  I get to the hospital, and I'm dumped in the ER.

My own memory of what happened here is fuzzy.  I remember them doing a lot of manual tests - taking blood pressures, pressing on my soft tissues, checking my vision with little flashlights.  A lot of people came in and asked me all kinds of questions.  Oddly normal questions like "What is my name?"  and "Who is the president?" A whole barrage of them.  I answered all of them coherently and lucidly, which I later found had baffled them because apparently someone in my condition is usually suffering from stages of dementia and isn't lucid.  They threw me in an MRI for a couple hours, found nothing and then came back in the room to tell me "We didn't find anything."  It took an ultrasound on my mid-section and back for them realize my kidneys were totally atrophied.

"Your kidneys are atrophied, Steven.  They're not working."

"Oh, good, okay.  Let's get this fixed.  Gimme a pill, I'll get some rest...."

"No, you don't understand.  Your kidneys are dead.  You'll require dialysis or you'll die."

"Ech.  Dialysis?  Don't old people who are dying do that?"

"You ARE dying.  If you don't enter dialysis treatments now, you'll be dead in a matter of days, maybe hours."

My world dropped out below me.  You can hear heavy words like that, but they don't always hit you right.  Especially when you're 24 and have the whole world before you.  I took it about as well as one might think.

"Oh FUDGE."

Except, as we all know, I didn't use the fudge word.  And, at first, I refused dialysis treatments.

"Let me die!"  I declared, being extremely undramatic.

This sent my family into a state of immediate panic.  My folks and brothers are such good people - I'll never forget how distressed they all sounded when I said that.  My older brother, Alex, though, came in alone, and grabbed me and said, "Don't do this.  You tell your niece she has to grow up without her uncle.  You tell that baby that."  He was crying, by stoic.  And, I thought of his baby daughter, Eva - my niece.  She wasn not yet a year old and had been the light of my family's life.  I wanted to be around to watch her grow up.  I had to be.  I'l always be thankful to Eva for saving my life - and to this day when I see her, I can't help but think of that and be glad that I'm still here to be silly for her.  I love that little girl dearly.

I had them tell the doctor that I'd have the vas-catheter put in my chest and I'd start dialysis in the morning.  Thus began the rest of my life - as a patient with End Stage Renal Disease and my career as a dialysis patient.


~Steve

The Adventures of Kidney Boy

My name is Steve.

I have End Stage Renal Disease.

ESRD is a pretty nasty condition. I'd love to be able to rattle off some kind of statistic like "Kidney Disease affects 1 out of every 100 people you know...." but off the top of my head, I don't really know any stats like that. I'm actually a pretty ordinary, average dude. I was until I was twenty-four, I thought. That's when my ordeal with all of this began. I was probably suffering from the effects of kidney disease for most of my life, but it wasn't until I almost died on New Years Eve in 2002 that I was actually diagnosed.

My story... well, I suppose it's interesting to me because it's my life. I'd like to write about it, share my history, trials and tribulations, and maybe offer some insight and hope into the disease for those who have it, or those who are affected by it. I'll be posting entries here in the coming months to tell me story, and offer you insight into what's happening with my life now as I am a dialysis patient waiting for a kidney transplant.

Feel free to ask any questions. I'll try to answer them the best I can.


~Steve

aka

Kidney Boy