Gifts....

I'm one of the lucky ones.  I've survived a decent amount of time with End Stage Renal Failure.  Mostly because I was young, and other than my kidney problems, I was strong and healthy.  But a big reason is that I'm one of those ones who's already had a transplant.

My first transplant was my miracle.  My gift - and it came from my father.

I, luckily, come from a really great family.  I've always grown up with two loving and supporting parents, two awesome brothers, both sets of Grandparents, a bunch of excellent Aunts and Uncles, and a bevvy of cousins who are not only my relatives, but also some of my best friends in the whole world.  Family has always been a constant, and a deep part of who I am.  However, I always felt like the "oddball" out.  I'm sure a lot of people feel that way in their families, but I've always had a interesting relationship with my parents.  I can only imagine what it was like to have to deal with the child version of me.  I was a stubborn, day-dreaming and lazy kind of kid who was always described as "not living up to his potential."  My father and brothers were atheletes, and quite into sports and such.   I wasn't interested in that, much prefering books, fantasty, movies, comics, computers and video games.  I played "little league" sports for our local town association - and, boy, did I suck at every sport I attempted.  And I mean I sucked.  My Dad was very involved, coaching several teams, and the poor guy usually had the fine task of corraling me into trying to pay attention during practices for these sports.  In basketball, I usually just tried to sit on the bench as best I could - one time, when I went in, I got the ball on a breakaway, and unusually took off down the court.  Huffing and puffing as much as my chubby little body could, I ran down to the net, unguarded - and I went in for the layup shot, just like in practice.  I dribbled (poorly) and finally lifted the ball into the air.  It sailed in a beautiful arc, through the air - I gasped - I was, wow, actually going to score!  The ball glided through space, inching ever towards the elusive round hoop, and suddenly.... it got stuck.  Right between the hoop and the backboard.  It just stuck there.  They had to get another ball to throw at it to unstick it. 

Only me.

Other sports were much the same.  I was the only kid to ever strike out in T-ball.  I once got a penalty kick in Soccer, and took a running free kick at the ball, missed, slipped on the grass and fell ass over tea-kettle, completely missing the ball.  Everytime I got up to bat in baseball, the damn pitcher hit me.  I was hit by more pitches than any other kid in the league. 

So, I gave up on the sports by the time I was 11.  I mean, it was a nice way to hang out with my friends on weekends, but the humiliation I put myself (and my friends) through just wasn't worth it.  My Dad kinda scratched his head on this one.  My other brothers were really good at the sports they enjoyed, but there was weird old Steve.  So when my father gave me a guitar, it was something we could really bond over.

Some of my earliest memories of life are of my father and his guitar.  I think I knew all the words to "American Pie" before I knew "The Star Spangled Banner".  I can still picture him around the campfire at his folks camp on DeRutyer Lake, playing old folk songs on his 12 string guitar.  The highlight of the night, for me, was always when we sang "American Pie". 

So when I was about 9 or 10, my Dad gave me a little starter guitar.  I had a few lessons from a place out in Manlius, but I wasn't so interested at the time.  I learned a few chords, and the guitar sat in my room.  However, when I was about 12 and my teen years were fast approaching, rock music became REALLY cool - and playing guitar became an obsession.  I started to pick out tunes on the little old guitar - songs I grew up with and the popular stuff of the day.  The first song I ever learned was "Horse With No Name."  My Dad's friend, Rick Fralick, taught it to me on the front steps of the Hunting Camp at my family's land in the Adirnondacks.  My Dad taught me a few songs that he knew too - some Led Zepplin, some Cream, Clapton, CSN.... and I played them all.  Badly.  Really badly.  My friends used to make fun of me, constantly trying to pick out these songs.... I remember, I spent a whole summer teaching myself "Under The Bridge" by the Red Hot Chilli Peppers, and I proudly played it for my friends who said "What the hell was THAT supposed to be?"

But for some reason, I stuck with guitar.  And I got better.  My Dad, always wanting to encourage me, bought me a little starter electric guitar kit.  It was a cheap "Les Paul Copy" and a small little practice amp, but it was my BABY.  I had an electric guitar!  I started jamming with guys from school, and I played in a lot of bad garage bands.  Playing guitar became my release - my passion.  I loved sitting down with it, and figuring out how to play songs.  I found that I could listen to songs, and learn how to play them.  I took Music Theory classes to learn how to properly read and write music, so I could find the rhyme and reason behind why I did what did.  In retrospect, almost 20 years later, it was the best thing I could have ever done. 

I spent the rest of my adult life playing guitar - and I've played with all kinds of amazing people.  I've been in several incredible bands, and I've even "toured" a little, and played in many different cities.  It's brought me close to so many people, and it's even how I met my wife.  The gift of my guitar... my music... from my father.  Through all of our differences and fights over the years, I've always treasured that in my heart.

So, when it was I was at the bleakest point in my life - where it seemed my father and I would never see eye to eye, and all we did was argue - I was struck down with my disease.  Without question or hesitiation, the man demanded to give me his kidney. 

And I mean demanded - there was never any question.  I hemmed and hawed about getting a transplant - I was just getting used to dialysis, and I still kind of held on to the early foolish notion that it was a temporary thing.  But my Dad insisted - he tested, was a match, and he was going to donate.

Not every kid gets lucky enough to have parents that give gifts.  Hell, I know a lot of kids who's parents didn't give a shit about them.  And that's really awful.  But here I was... blessed with parents who would give all, and I spent years battling them at every turn.  When you realize how spoiled you can be and how ingreatful you are sometimes, it humbles you.  It focuses you. 

I'm not perfect now - but you bet every damn cent you own that I'm the most thankful boy out there.  The world doesn't owe you shit, and it'll throw you down into the pit quicker than you can blink.  I'm so thankful for the ones who love me - and are willing to give gifts.

A couple of years after the transplant, my Dad's family had a family reunion out at the camp on DeRutyer Lake - where I'd spent many a night as a child around the campfire, listening to my Dad and Uncle play songs on their guitars.  Everyone was gathered around, and someone handed me a guitar.  Now it was my turn to play - and one of the little girls asked me if I could play "Puff The Magic Dragon".  I'd never played the song before, but my hands found their way to the fret board and the chords poured out of me, as if it were the most natural thing in the world.  As we all started to sing, I knew I knew the song because I had a part of my Dad inside me.  And it wasn't just the kidney.

~Steve

Being sick on TOP of being sick...,.

I have had a nasty run with the cold/flu for the past two weeks.  It's had me so rundown - and that's such a problem when you've already got a chronic condition like End Stage Renal Disease.  Being sick and on dialysis?  It's the worst.  You think you're rundown already, and even simple things are tough - but then throw in the rigors of fighting off a virus and a cold?  Whew.  I feel like I ran the gauntlet.  I'm feeling better today, but it seems like such a slow recovery.  I lost my voice during this - twice.  It started to come back and then it went away all over again.  I actually sounded like Harvey Fiersstein for a while there. (He played Robin William's brother in  Mrs. Doubtfire, for those who are wondering.  Really gravelly voice.)  Also, I suffer from some kind of IBD (Inflammatory Bowel Disease) like Crohn's Disease - I developed it after I was on dialysis.  My gastroenterologist isn't quite sure what it is.   I had one colonoscopy (yay.) and discovered it wasn't cancer. (yay.)   But he still doesn't know what's wrong up in there; he says 12 cm of my colon looks like a warzone.  I've seen pictures.  It looks like Darfur for a bit in there, and then - fine.  Clean as a whistle.  Leave it to me to be some anomaly.    But it REALLY messes with me - I'm constantly using the bathroom, which leads me to be practically a shut in on days when it flares up.   It's been flaring up this past week.  I've had the triple whammy of Dialysis, Cold/Flu/, IBD flare up.  My life is AWESOME.

And, yeah, I gotta admit - I've been really down because of it.   It feels so dark some days - like my body's just given up, and I've got nothing left.  You really start to feel your place in the universe - small, cold, alone.  You end up not being able to sleep at night - and my wife works overnight shifts at the hospital - I'm alone, feeling like I'm one foot in the grave and helpless to get out.

Yep.  It's pretty bleak sometimes.

But then that moment of clarity breaks in, almost like the dawn.  It's muddled at first; I'm still feeling rundown and awful - like I'll never get any respite from it all, but then, it slowly ebbs away a little.  And I go on - and then I remember who I am..... I'm not small.  I'm not cold.  I'm not alone.  Sure, a few things may be going wrong now - but, dammit, I'm tough.  And dammit, I want LIFE.  I want it all.  Sure, there's some bad things to it - but there's good too.  I'll still feel the sun on my face, and the embrace of my family, a kiss from my wife and a laugh with my friends.   I want these things.... I have these things, and sometimes I'm just going to have to suffer in between.

It's not always easy to rally yourself - and lord knows my rallies only bolster me so much.  But they keep me going, and that's what's important.  Besides, I always have some kind of soundtrack playing in my head, and if it keeps me going, I'll spin "Glory, Glory Hallelujah" in the old mental jukebox if I need it.

~Steve

Enjoying the little things....

It was a nice, mild Fall day out today - so I took my dog for a walk.  About seven months ago, my wife and I got a little Boston Terrier for her birthday.  We named her Abby - and she's been our pride and joy since we got her.  Having a pet has been theraputic for me.  She's sweet, loyal and fun - and she's very loving.  When I do dialysis, she sits on the couch on the opposite side of the room, just watching me sometimes.  She knows not to come near the machine or me when I'm on it - it's like some kind of weird sixth sense, because she never makes any attempts to jump into my lap when I'm dialyzing.  As soon as Jordan takes out the needles, she jumps into my lap, licks my face, then curls up in my lap to keep me company.

I think it's pretty awesome.

So, when I'm feeling well and feisty, I love it when I can take her for a walk.  It's funny how just the simple act of walking my dog makes me feel so free - it's the little bouts of normalcy and routine that make you remember that you aren't just some patient and that you're alive.  It stinks, because the moments are much further and farther between these days.  Some days, I can only lie on the couch as Abby takes a nap on my stomach.  But at least she's there.

~Steve

What it's like....

Sometimes I think people have this image of dialysis as being this minor little procedure I do, and the am done with it.

It's actually, for me, a pretty involved process.  Because I do it at home, I have to prepare all my supplies prior to treatment - laying out protective "chucks", gauze, tape, needles, alcohol prep pads, sterilization pads, etc.  I draw up 4.5 mls of heparin, a blood thinner, into a syringe - which is an easy process, but you do have to maintain sterile technique while opening packages for the syringe, needles, etc. I lay all that out, and then I grab a 1000 ml bag of saline solution and I hang that on a hanger above my NxStage machine.  The NxStage Machine uses "cartridges" that are placed in the front of the machine - you push several tubes into several slots, close the door, and then "spike" the saline bag with the lines off the cart.  You "prime" the machine, which runs the Saline through the lines, preparing the dialyzer for treatment.  It takes 15 minutes to prime.

In the beginning, we used "bags" of pre-mixed dialysate solution - this is what is pumped into the dialyzer during treatment, and it's this solution (with it's proper mixture of chemicals and minerals) that clean your blood through osmotic treatment. Now, though, I have a machine called a "PureFlow" which mixes up 60 liters of fluid per batch.  It takes seven hours to make a batch, so I have to make sure I make one well in advance of treatment.) I use between 20-25 liters a treatment.  With the 5 liter bags, I had to hang 4 or 5 at a time, and they were heavy - so the PureFlow is great.

When the cart is done priming, I have to snap and tap the lines to make sure no air is left in the lines.  You don't want an air embolism going into your blood stream, as it could travel to your heart and potentially kill you.  Yay.  I do live dangerously people.  So once I'm done snapping and tapping, I make the final line connections - connecting the PureFlow to the cartridge, and entering the treatment parameters on the front panel.

This is an involved process.  On a good day, I can do it in less than a half hour, but it usually takes me longer.

And then there's dialysis itself.

I'm often asked: does it hurt?  For me, the answer is no.  Besides the small amount of pain I feel when the needles pierce my skin, the actual treatment doesn't "hurt".  However, I am required to remain in one position for several hours - I cannot move much, for fear of dislodging the needles.  So I keep my arm and body very still.  You can't shift positions other than very subtly - this might not sound bad, but try, as an experiment, to NOT MOVE AT ALL the next time you watch TV.  No laying down, no shifting your weight, no getting up to pee or get a snack.... nothing - and hold your right arm completely immobile at your side on the arm rest.

I've had people say to me "Well, don't you just sit around and watch movies?"   Yes.  Yes, I do - but, like I said, it's not the relaxing, comfy movie-time we all love.  I'm used to it now, after four years, but it took some training to get me not to move - and several times early in my career as a dialysis patient, I "infiltrated" because I moved my arm too much.  That's where the needle comes out of the vessel, but it still under the skin - thus the machine is pumping blood under your skin, not in your vein, causing pain and swelling.  It's about as fun as a porcupine mud wrestling marathon.

Dialysis also requires the removal of all the excess fluid you accumulate - think about it, every time you drink a can of soda (355 ml) or a bottle of water (500 ml), you gain that much weight.  1000 ml = 1 liter and 1 liter of fluid weighs 2.2 lbs.  You can gain a lot in water weight if you drink too much and, like me, don't pee it out.  So dialysis removes that for me.  Sometimes, though, my "dry weight" will fluctuate.  (Dry weight is what your body should weigh with no fluid on it) and when that happens, sometimes I can take off too much water - which results in pretty awful cramps.  I can give myself a bolus of saline for those times, but even then, I'll feel like crap the rest of the day.

So, yeah, dialysis isn't some walk in the park, oh just go and do it while you watch TV event.... it sucks.  Sitting in a comfy chair and having a TV make it more bearable, but I would rather be NOT sitting in the chair and watching TV.  I'd rather be anywhere but there.

~Steve

Just a quick note....

Thanks to all who read - I've gotten a few private emails/notes about the blog, and I have it set now so that anyone can leave comments on the blog - you don't have to have an ID or a membership. 

Again, thanks for taking the time to listen to me - writing about this really helps me live with it, and I'm glad it's at least entertaining some and helping others.


~Steve

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