Having a life

It's hard to have any kind of social life when you're on dialysis.

The treatment itself takes up a good amount of time, depending on when you do (either in-center, three times a week - 4-5 hour treatments, or at home 5-6 days a week 3-4 hour treatments) and then you're not always gauranteed to feel great after the treatment, so you may spend a lot of time just resting.

I've been lucky; I've tried to keep an active life.  I'm not as active as some on dialysis - I've read about some crazy folks who still go globe trotting, climbing mountains and such.  God Bless em, I don't know how they do it!  But I'm still fairly active.  I went to school for a while while I was on dialysis, and I worked part-time - mostly doing odd-jobs for people.  I run a video game company, and we make adventure games in our spare time - it's a hobby site, but we put in a lot of work to our products, and the team is comprised of people from all over the Globe.  I play guitar in a band, and I still manage to get out and play a gig or two.  I even got my friends and family together this summer to shoot a little comedy movie - we had a crew, costumes, a script.... it was a lot of fun.  Whenever we can, my wife and I go up to my family's camp in the Adirondack - it's nice to get away, if only for a day or two, and enjoy the woods.  We even did dialysis up there once, which was a crazy experience.  Doing dialysis in a cabin in the middle of the woods was a very zen-like experience. 

I'd say that keeping busy keeps my mind focused and on the good things in my life - but it does, at times, make me realize how limited I am.  You get a taste for being on the move and doing things, and you wish you could do more only to remember you're tied to a machine with a three foot freakin' tube. 

I can't for the freedom that a transplant will someday provide me with - I don't think you'll be able to stop me from going and going!

~Steve

Alone out here

Sometimes it can be lonely out here in the world of dialysis.

Before I was sick, I was a really active and social kind of guy.  I was out most every night, doing something interesting and hanging out with many different groups of friends. 

Then suddenly you become chronically ill, and everything changes - and inevitably, you lose a lot of those "friends" you had.  It's funny, often when you're young, you KNOW that the "friends" you have are really more aquaintances and that the relationships and bonds you form are fleeting - but it becomes painfully obvious how true that is when the chips are down.

I did "loose" a few friends when I got sick.  I don't blame them, really - it's hard to be a friend to someone on dialysis at times.  People don't understand kidney disease, either.  People also want to hear "Yeah, I was sick but now I'm better...." and that's something you don't hear with kidney failure.  I can't tell you how many times I've been asked "So, how much longer do you have to do dialysis?"   And I always have to answer with something slightly morbid like "Until I die."  It's the truth, though.  This is it for me.

And yeah, I think that's hard for friends to take - and for family.  I know that it's hard for some members of my extended family.  There's a bit of an "ostrich with it's head in the sand" syndrome with them.  Everyone's aware, but often times I feel like they pretend it's not.  And sometimes that hurts.  I can't blame them - everyone's got their own issues, and I try to remain as concerned for theirs as I'd want them to be for mine.  But sometimes I want to scream "I'm sick as hell!  You have no idea how bad I feel day to day!"  I'm sick of hearing "You look good, what have you been doing?" 

"Not eating because I feel like crap!" 

or hearing whispers of "He doesn't look so bad......"  Yeah. That's because anytime you see me in public, it's when I feel decent enough to drag my carcass out of my house and off my chair.  And even then, I run out of steam real quick.  These days even more so - I feel like I'm moving through molasses every time I'm out and about.  I have trouble concentrating at times, because I'm just focused on staying conscious - sometimes I feel like I'm ignoring people, but I'm not.  I'm just wiped out.  Chances are, if you haven't seen or hung with me in a while, it's not because I've been doing anything awesome.  It's mostly because I've been doing nothing but sleeping or reading at home.

I am sick.  I'm also trying to live the best life that I can.  And, I do - I've still done some awesome and incredible things in spite of my lack of general health.  But every now and then, I need a little compassion and understanding.  Then again, I think everyone needs that -  I suppose that's where "the golden rule" comes in. 


~Steve

Getting Engaged, and Dialysis Comes Home....

So, four months into my brand new relationship,  I had to return to dialysis.  I headed back to the clinic I went to before my first transplant, and began treatment three times a week.  The In-Center treatments would last four hours, and I'd be there for about five every other day - and I was usually wiped out after each treatment.  I would come home and take a nap for at least a couple hours after each session.  So, yeah, it was a bit of a stress on our relationship - but as I talked about in previous entries, we worked through it and came out even stronger because of it.

A little over a year back on dialysis, I knew I was going to ask Jordan to marry me.  We'd casually talked about it - which, I learned, is something you just don't do to a girl because they get very, very excited at the proposition.  Finally gathering up some courage, I took her father aside one night when we were visiting her parents and I announced my intentions.  It's funny; you think of those big moments in your life - your first drive on your own in a car, a graduation, moving out, asking your girlfriend's father for her hand in marriage - and when you get there, you're still nervous as hell.  David, Jordan's father, just smiled and welcomed me with open arms.  He even gave me his family heirloom ring to use as an engagement ring.  It's a beautiful diamond ring - much nicer than anything I could afford at the time.  I kept that ring in a box in my pocket for a couple of months, showing it to anyone I could.

"LOOK!" I would exclaim as I quickly whipped the ring out of my pocket. 

I can't tell you how many times Jordan and I were hanging out, and I had the ring on me and I was dying to give it to her and ask her.  But I wanted a "right time" to ask her.  I didn't want to do something really grand and cliched - it's not my style.  But I did want it to be special, sentimental and a moment we'd both remember. 

We had planned a weekend trip to New York City to see some of Jordan's friends.  She had gone to school in Queens and had a plethora of good friends down there who were dying to see her.  Traveling on dialysis is tricky, so I made plans to do dialysis very early on Friday morning, and we'd leave for the city in the afternoon.  That morning, I woke up early, and went off to dialysis.  I came home several hours later, and Jordan was still in bed sleeping.  I went into her room, and I took a knee next to her bed, and rubbed her hand until she woke up.  She groggily opened her eyes, and I kissed her gently and told her how much I loved her.  She smiled, and we talked about how excited we were for the trip.   I reached into my pocket, and I asked her "the question".  Without hesitiation, a resounding yes sprang from her lips.... and she kissed me furiously.  I slipped the ring on her finger, and we went off to New York to celebrate.  We had a great trip - our first together as an engaged couple.

We spent the next year planning the wedding, which is an amazingly ardouous task, let me tell you.  Many times I got in trouble for providing this response to many a question regarding the wedding.

"I don't care, I'm a dude."

Guys, a bit of advice, even though that makes sense to us, never say that to your fiancee.  I'm lucky I didn't get punched in the face.

As we approached the wedding day, I was offered a chance to visit the home dialysis unit at my center.  They had started a home hemo-dialysis program using a machine called NxStage System One.  Jordan, being a nurse at the VA hospital, was very interested in doing the program.  So, we signed up for it and jumped in head first into the world of home hemo-dialysis.

It's pretty amazing to be able to do dialysis at home - but it's a complex system.  We had to go in for training for several weeks - which was very taxing on the wife, as she would work 12 hour over-night shifts at the hospital, and then come in center for another four or five hours to train with me.  The poor girl didn't get much sleep during this period - but we were quick learners, being that we both had decent medical knowledge and training before hand. 

Having our own small dialysis machine was great - but it also meant another amazing thing - we could take it on a honeymoon.... which meant we could actually get away to enjoy one!

~Steve

Your request is denied.

Well, today we got the disheartening news:  there's too much protein in my father-in-law's urine, and they won't allow him to donate a kidney to me.

It seems like this is hard for some people to wrap their minds around.  I got a lot of "Yeah, but I thought he was a match?".

He is.  He is a match - however, there's other factors - like the potential health risks to the donor - that have to be considered.  Too much protein may suggest compromised kidney function on his part, so donating may put his health at risk. 

And it's heartbreaking.  Not just for me - don't get me wrong, I'm sad about this, but I'm used to failure and disapointment.   You're talking to a dude who lost his kidneys at age 24 - I've been alive seven years after that, and I've learned that the world will just crap on you sometimes.  Like, take the biggest, most awful dump you've ever seen - right on your head.  It will crush your hopes and dreams without even offering a courtesy wipe.  I've been there before.  I'm used to it.  I pick myself up, and keep moving forward.

But I know how much this upsets my family, and that breaks my heart.  My Father-in-Law worked so hard to be able to donate to me - and now this.  I don't want him to feel his work is in vain, because I couldn't make it without the love and support of my family.  My parents have been amazing through all of this, and my in-laws took me in as one of their own, and have loved me so honestly since I have been with their daughter - that's worth more than all the gold in the world.

I'm trying to keep a tough front, and I'm trying not to scream - but I am human, and I am so sorely disapointed.  But I will keep moving on, and we will find a way to get me a transplant - and get me a better life.

Thanks for listening.

~Steve

Living with a fistula

Not me.  My chest hair is way more awesome.

So, specifically, I do a form of dialysis called hemo-dialysis.  There's actually two major kinds of kidney dialysis that people tend to do in the United States.  Hemo, which I'm on, and peritoneal dialysis.  With hemo dialysis, an access is placed in your body which allows a dialysis machine to be attached to your body, and a small amount of your blood is cycled out, cleaned and has water/waste removed, and sent back to the body.  The process takes about four hours for most people - sometimes more, sometimes less.  Most people do this three times a week - and while the treatment itself lasts four hours, the whole process takes longer.  There's about a half-hour of prep before the treatment - cleaning your access site, getting the supplies ready, and having the needles put in.  Then there's post treatment - you have to have your blood returned, and the needles removed - and then you have to apply pressure bandages to stop the bleeding from where the needles were.  That can take up to half hour - then, I like to wait around for a while to gain my bearings as you can get a little dizzy, loopy and tired after treatment.  Doing dialysis isn't just something you "do" and then get on with it.  It takes up your day, and can ruin the whole thing.  I think a lot of times when I tell people I know "Oh, I have to do dialysis..." they think it's like taking a pill and moving on.  It's not - not at all.

As far as hemo-dialysis accesses go, most people either have a port, which is a plastic tube, attached to their chest and it goes into your jugular vein.   When I first when on dialysis, in an emergency situation, I had one of these in my chest.  It was a bit awkward, and the speed at which the dialysis machine could run wasn't that fast.  Eventually, I had an artereo-venous fistula put in my right arm.  Basically, it's where my vein and artery were surgically attached to each other to make one large vessel that could handle the use of the large needles needed for dialysis.  (15 guage needles.)

 It takes a bit for the vessel to mature, but once mine did - boy, did it mature.  Mine's very healthy, though.  I'm lucky.  Some people's don't last very long, they develop aneurysms and they're rendered useless.  I've had mine for almost seven years, and it's still going strong.  I can achieve high blood speeds on my dialysis machine, so I get good treatments quite often.  But living with this is hard -  I have to be careful with it - I can't lift heavy objects with the arm any more, and I if that ever gets cut.... I'd bleed out in an instant.

I've never done peritoneal dialysis, but from what I understand, a catheter is placed in your "stomach" where the peritoneal cavity in your body acts as a filter - dialysis fluid is added, and the blood is filtered in there, and then cycled out.  Sounded a little too gross for me. 

So, I live with this giant sausage of an access port on my arm, and it kind of gets in the way a bit.  My arm can ache from it, and I try to wear long sleeves a lot to cover it.  It's kind of unsightly, but my wife (God bless her) is very kind about it and often says "You should be proud of your fistula!  It works amazingly well and it keeps you alive!"  She's got such a great attitude about things, even when I'm ornery about it.  (On any given day I complain about the thing: how I hate how it looks, feels, etc.)

~Steve

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