Had A Bad Day

We had an "incident" on dialysis last night.  It's the first time anything like this has happened with our NxStage machine, but it can happen to anyone.

Apparently, there was a small tear or break in one of the lines on the cartridge for the machine.   I didn't notice it, but about an hour into treatment, I took note that I felt "weird".  Just off - I can't fully explain, but I felt more tired and off.... like I'd been punched by an angry man in a rubber room for an hour.  I looked over at the machine, and everything looked normal - but I noticed one of the readouts on the computer screen was really low.  The machine tracks the pressures in my venous, arterial and effluent (waste) lines.  My effluent line's pressure was really oddly low, and I told Jordan.  We scrambled to find the problem, and we noticed the tray underneath the machine was filled with fluid.... it had been leaking dialysate.  Jordan immediately took me off the machine, but I was feeling wonky..... and my arms and legs were cramping like you wouldn't believe.  I couldn't even operate my fingers on my right hand, they were just frozen in this rictus of pain.   When I stood, I got really dizzy and lightheaded.... AND I had to use the bathroom.

We found a small leak in the cartridge later, and called my doctor.  It turns out that the machine had taken off almost 5 kg in one hour.  Normally, I take of 1.6 kg an hour.  I lost over 10 pounds of water weight in an hour.  It'll do you in.  My doctor told me to rest, and if I felt any worse or crashed to go to the ER.  I had several glasses of water, and laid down to sleep.  Eventually, I fell asleep, and so did poor Jordan, who was more keyed up than I was.  She was worried about all that COULD have gone worse in the situation.

It was a hard reminder to us that dialysis is some serious shit.

We do it so often, and so effortlessly,  sometimes I forget that it's an involved medical procedure and it always has the potential to turn sour quickly.  The NxStage machine has as many safety features as you can get, but sometimes it'll still get away from you.  You have to be vigilant every time you use it.  Dialysis isn't some simple procedure you just do - like taking a pill or getting a shot.  It's deadly serious business.

So, hopefully today's treatment fares better.   I've got a trip to Florida to get ready for!


~Steve

I'm Going To Disney World!

Being on dialysis makes traveling harder than normal.  Also, being as broke as I am due to the lack of ability to work keeps me pretty grounded at home.  I haven't been out of the state in years - also, I haven't flown anywhere in over 15!

My wife and I often talked about how after I got a transplant and went back to work, we'd take a vacation somewhere.  She often talked about the times she'd been to Walt Disney World in Florida and I mentioned how I'd never been, and I'd always wanted to go.  It became our little secret goal - we'd talk, and giggle about it, just to keep our spirits boyued for that far-off future.

When everything seemed to fall apart in the last few months, with my health declining and the Transplant Clinic rejecting my father-in-law's offer of a donor kidney, I began to get depressed.  My wife, being the awesome girl she is, took notice and started to look into finding deals so that we could afford a trip to Florida.  She saved and sacked away a little money, and found some decent deals - and VOILA - she surprised me by telling me she was taking me to Florida.   She'd already talked to my dialysis center, NxStage (The company that makes my machine and supplies) and looked into traveling with a dialysis machine.  Yeah, it's a little more work, but we're going to do it.

I could use a get-away.  Sometimes, the monotony of being sick and being home really wears on you.  Perhaps this getaway will recharge the old batteries, and give me strength to renew my fight.  I'm really holding on rough here these days.  It's getting harder and harder just to exist.

So, I hope the weather is at least a little sunny and warm.  We're still working on putting together some more money for the trip - my wife works so hard, so a vacation would be good for her too.  Worrying about your finances is something you do in spades when you're sick - but sometimes, you just need to take a break!  And while there's no break from dialysis, at least I'll be doing it somewhere else... and maybe I can go sit in a "Lazy River" when I'm done.


~Steve

Merry Christmas

Merry Christmas, folks.  I wish you and yours could experience the wonder and joy that is love - I know I've got it in spades from my family.

Here's to a wonderous new year - for you, and for me.  I hope this is the year I get a transplant and it works well.   Thanks to all that have read my blog this year - writing it has been a joy so far, and I'll continue to do so until I feel I've nothing left to say.  Which means you're stuck with me FOREVER.


~Steve

I have no mouth and I must scream

So.... I had a meeting with the colo-rectal surgeon today.

They can't do anything for me.  Surgery on what is ailing me is ineffective.... basically, I have to live with this until it heals itself or it devolves into a full on rectal prolapse.  The way they normally treat this?  Have you drink lots of fluid and increase fiber.  I'm on a fluid restriction because of my kidney disease.

So basically, the only way to treat this is to get me a kidney transplant.

It's all so frustating.

I'm resigned to the fact that I have to live being sick and usless more of the time - but it still sucks, because I have so much ambition in my heart.  The mind yearns but the flesh is weak.... sigh.  Just another hump for us to get over.

I try and count my blessings, and I have so many - but sometimes, it's hard.  And sometimes, like now, I just want to scream.   But after the scream, what do I do then?  What I always do.  Keep moving on.

But for now, I think some light screaming is in order.

AGGGGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHHHH.


~Steve

Living With Dialysis:Outside Myself

I came across a great article about dialysis - it's history and it's ties with Medicare and Medicaid.  (It's located here, if you're interested - http://www.propublica.org/article/in-dialysis-life-saving-care-at-great-risk-and-cost )  The article was really informative, and it actually referenced Bill Peckham and his blog, Dialysis at the Sharp End of The Needle.  Bill's been kind enough to talk about my blog on his site - a link to his site is over on my links section at the right.

Aside from the interesting information, the article shared several stories of people's experiences with dialysis - some good, and some horrible.  It really makes me appreciate my experiences with dialysis.  I haven't had any major bad "blow outs", but I've had a few rough treatments in my day.  I've found that doing home hemodialysis has been the best for me - I get more treatments that are consistently better - I rarely have a treatment where I bottom out at the end of treatment.  Sometimes in center, I'd be so worn out after treatment that I'd need a several hour nap after doing four hours of dialysis!  I think lately I've been feeling so horrible because of my severe bowel distress - with my upcoming bowel resection surgery, I think I'll be feeling a lot better.   Hopefully at least a little more, just to be able to increase my activity level.  I'm usually a real "up and at 'em" kind of guy, and I've been sidelined for months now.  It's depressing the hell out of me! 

Anyway, I do enjoy reading other people's stories and experiences with dialysis - it's a large world, filled with all kinds of people from all walks of life.  After the article, there's a comment section that's filled with stories from people on dialysis - and a lot of them are inspiring.  One from one woman who was on dialysis in 1978 at age 20.... she ended up getting a transplant and having kids... leading a good life.  That's what I look forward to.   Dialysis is hard, and a life on it can truly suck, but it doesn't mean that it's over.  I have to have the hope that I can make it through, get a new transplant, and start leading a life of better quality.  So it's nice to read stories like hers.

I hope that anything I share on here can have a similar effect on others - maybe my words and my story will add to someone else's stores of hope that keep them going.  At least, I wish that in my heart.


~Steve

Gettin' graphic for the holidays

Okay.  I'm about to get nasty and graphic here while discussing what happened to me this weekend.  So, if you're faint of heart or just don't wanna hear gory details, you might want to sit this one out.

That said, it's not that it's all lascivious or something, but it does have to do with my butt.  Well, inside my butt.

Last week, I woke up from a mid-day nap to find I urgently had to go to the bathroom.  I mean, urgently - when I got to the toilet to make nice-nice with the bowl, I found that instead of feces, I expelled an unholy amount of blood and blood clots.  Large chunks of solid, coagulated blood.   This had happened to me before; before I saw my GI doctor, I'd have incidents where I'd pass blood and blood clots - it turns out that the mass inside me really, REALLY likes to bleed.... it had been under control for months, but for some reason, it acted up again.  I had the one incident, and then it stopped.... so I breathed easy, and chalked it up to it getting irritated for a moment.

However, late Thursday night - it started again - and it didn't stop until I checked myself into the hospital at Noon on Friday.

I was throwing out blood and blood clots like I was a production assistant on The Texas Chainsaw Massacre.  Seriously, I think if any normal person saw the amount of blood that came out of my body, they'd cry and pass out.  I'm so blase about it - I didn't even FEEL bad...... I got up and cleaned the kitchen Friday morning before I decided to go to my dialysis center to have the test my hemotocrit levels.  I figured that with such massive blood loss, I might need a transfusion and that my H&H levels (red blood cells) would be severely low.  Again, I bucked the odds by NOT having low blood pressure (in fact, it was high) and my H&H was lower than a normal persons, it was still right around where it has been for me for a while.  I managed to save most of the blood clots I had expelled - this is where my life is nasty and sucks - I scooped them out and put them in a plastic bag.  They filled up almost half the bag - when the nurses saw my ass bag o' blood, they often turned about as pale as I was.

So, my wife and I went to the ER, checked me in - by the time I got to the ER, I started feeling mildly dizzy.  Nothing too bad, though, which was odd.  I was more in a state of mild panic, though - just because I wanted answers.  They gave me some "protonics" and my bleeding stopped, and I waited to see the GI doctor.  I knew he was busy that day - apparently that Friday was everyone's Butt Emergency Day, so I spent most of the afternoon just sleeping in the ER bed, with my ever vigilant wife by my side.   Finally, a jovial dude of a doctor popped his head in - his amazing mane of chest hair popped out over his slightly unbuttoned shirt.  I called him "Dr. Disco".  He was pretty awesome, though - and he told me that I had a prolapsed rectum, and that I'd need surgery to repair it.  No colostomy, which made me happy.

So, now I have to have this bowel repair/resection surgery.  I'm actually excited about it, because I just want to move on.  Get this solved, hopefully feel a little better, and then get me a kidney!

~Steve

Miracles....

I can be a big cynic.  Anyone who knows me knows that I often have a wry comment for everything.  And if you really know cynics, you know beneath the cynicism beats the heart of a real softy.

The Holiday Season brings it out in me - the softy, I mean.  I guess I really believe in miracles.  I believe in the season.  I was watching a stupid ole TV show, and it was a Christmas episode, and of course, the "Christmas Miracle" came true in it - and I found myself quietly smiling and tearing up a little.  I mean, life doesn't always wrap up with a neat little bow in 30 perfect minutes, but I love the thought of miracles and redemption during the holidays.

Life is hard, and it's hard all year - I guess I really get sentimental when I think about getting that little boost at the end of the year.  I like talking to old friends I haven't spoken with in a while.  I love seeing my family, especially people I haven't seen in forever.  I love remembering friends and family who've passed on.  I love finding that little gift or thing that someone I love really wanted, and giving it to them for Christmas.  I love seeing the kids rip open their presents and the sheer joy they experience.  I love seeing people put aside their differences, and sharing a good moment.  I like eating the food!

I like feeling like I'm still part of something good - in a larger sense, I enjoy seeing people being good to one another, at least for a little while.  You know, I always used to wish for some kind of Christmas Miracle for myself - and, in my youth, of course the wishes were more selfish.  You know, wishing for "things" or "money" or whatever.  All that time, though, I was getting the miracle.  I was given the miracle of the Holiday Spirit, and the friends and family to deliver that to me.  It's still going on, thank God, even after all I've been through and that's probably the greatest miracle I could ask for.

~Steve

Waiting....

Tom Petty said it, "The Waiting is the hardest part...".  Of course, he was talking about waiting to "get some", but the point remains.... I spend a lot of time "waiting".  I think that's one of the most maddening things about all of this.  I'm just waiting.... waiting to get a new kidney, waiting to see my GI doctor to get my bowel problem resolved... it makes you feel kind of useless.

I try to fill up my time, though.  Working is hard - I know some people still work while on dialysis and others don't.  I feel so different day to day, it's hard to stay consistent enough to work a job efficiently.  Most of the work I do is part-time, and on an "as needed" basis for people.  I like it when I can get those jobs - mostly I work on them from home, but it makes me feel productive when I can help out.  When I'm not doing work for other people, I manage a retro-gaming "company" called Infamous Adventures.  We're working on several video games right now - old school "adventure" games, with a decidedly early 90's flavor.  It's a lot of fun - I work with people from all over the world and all walks of life.

So, yeah, keeping busy and feeling productive and useful is something that weights on my mind a lot.  Just one of those things, I imagine, that anyone who is chronically sick can identify with. 

~Steve

Welcome to December

Wow.  December rolls around again...

When I was young, I used to wait with anticipation the whole year for December... it was always such an exciting month.  Christmas was around the corner, and Christmas was a big deal for me and my family.  Growing up, I was lucky enough to be close with both sets of my grandparents.  My mother's parents lived just across town from us and my Dad's parents lived in the next town over.  The whole month would be spent planning on the gifts I'd get.  As a child, I remember buying cheap little trinkets from the weird sales they'd have at my elementary school - cheap little tool sets for Dad, and shockingly cheap jewelry for mom, or some other weird trinket.  They'd always have the guys come in during the month, and they'd be selling these cheap wares from giant metal cases.  I was always so excited to pick something out for my family members, in hopes that they'd like it.  I honestly had as much fun giving the gifts as getting them.  I always tried to get stuff for my brothers that I thought they'd like, but I do remember a couple of times pulling the ole "I got this for you, but I really like it..." move on my younger brother, Dave.    He was always a good sport about it - he was always just as into buying the little presents from the traveling cart as well.

My Mother's parents house always seemed so huge to me - it was this older place over on the far side of Minoa, and I always thought there was so many cool little nooks and crannies to the place.  I mean, the place had three bathrooms, which fascinated me!  But it also seemed so huge because it was always filled with people - my Mother is one of nine siblings... and they all have kids.  There were so many of us - and growing up, there always seemed to be more.  There was always some new baby every Christmas!  We would all gather downstairs, where there'd always be a big tree near the fireplace - and man, it always SPARKLED with the shear amount of presents underneath it.  My grandparents always got every one of us grandkids something for the holidays.  Not an easy feat!  I loved seeing that room all decorated for the holidays - and I recall that there was an old piano in the corner that I used to love to bang on.   It's fun, because the house is still in the family - my Aunt and Uncle bought the place, and now they still host the holidays there every year.  It's a little slice of nostalgia and holiday cheer - and, all of sudden, we're all grown up, and now it's getting to the point where there's new babies showing up at Christmas every year..... and my grandparents still get every grandkid a little gift.

After we'd go to my Mother's parents, we'd go over to my Father's parents.  My Dad is one of five, so the gatherings were pretty big over there.  The age spread between the cousins was pretty big too - my oldest cousins were almost a decade older than me and I always thought they were so cool.  They were already rockin', hip teenagers when I was a little kid, so I always looked forward to seeing them.  My Grandfather was an old, stoic city cop, who could come off as gruff, but was so tender around the holidays.  He loved having his family over - I can still see him, sitting in his recliner, with just the biggest smile on his face.  He always decorated the house in the same old ornaments - including this giant plastic Santa Claus head that was mounted on the wall behind the tree.  I'll always remember that.  (My Aunt Mary Lou still has it!)  I remember sitting in their little kitchen; they always had Ginger Ale on hand, and I always drank a ton of from these glasses with diamond shaped dimples on it.  To this day, when I drink Ginger Ale, I think of sitting in the kitchen with my Grandma as she prepared all kinds of food.  I'd also hang out in their main foyer, where she'd always set up a Christmas Village.  As we got older, my grandfather set up a room in the basement, where I'd hang out with my cousins Conor and Casey.  I miss that house, and the holidays we spent there as children.  My grandfather passed away in 1998, and shortly after, my Grandmother moved into a brand new house with my Uncle Joe and Aunt Mary Lou, who now host the holidays in their home.  My grandmother still put up all the old decorations: the Santa Head, The Village.... those will always make me think of her.   She passed away a few years ago now,. and though it's sad, I always use the holidays to remember and cherish them - they really loved their family so much, and they loved Christmastime.  I think it was their enthusiasm that really stuck with me, because I have a real sentimental place in my heart for the holidays to this day.


Now that I'm married, I have a new tradition of spending Christmas Day with my in-laws, and I couldn't have married into a more perfect family - they love the holiday as much as I do.  Spending the day with them is so joyous and fun; it makes me giggle, honestly, how perfect it feels.  And I have a wife who loves the season as much as I do to.  We spent the weekend going out, together, to find a Christmas Tree.  We ended up at this really neat little farm out in the country, where we rode a wagon out to the field, and Jordan found and cut down a tree herself!  We've spent the last two days decorating it - and I woke up this morning, turned on the lights, and sat in the darkness of the morning, just staring at the soft lights of my tree.... and being thankful for the good things that I have.




Here's hoping for a new kidney, so I can enjoy many more years of this.  I've still got a lot of sharing of the season to do for years to come.

~Steve

Living in trying times with all this hanging over your head....

Living with kidney failure is a hard thing.  I'm not going to lie; I'm also not going to lie and say that it doesn't lead to some kind of depression, either.  I'd venture to say that most people out there with ESRD (and on dialysis) suffer from some kind of depression - I'd venture to say that a lot of people out there suffer from crippling depression.

I know I do - or I can have bouts of it, for sure.  It's hard to keep your head above water about life when you feel so awful all the time.  The mental weight of feeling "bad" can really bring you down, even when other things in your life are great.  In my case, my life outside of my disease is great - I've a great wife, family, hobbies and job opportunities.  I've got a lot to be thankful for, especially in these trying times.   But the sense of futility about my condition, and the level of exhaustion, frustration and devestation I feel from day to day will just put me in the crapper. 

You just have to do the best you can - and really make efforts to keep your head above water.  I think a little amount of depression about the condition is normal - and good!  You'd have to be inhuman to not be sad or upset about not having kidney function and feeling bad all the time.  There's just nothing good about that.  But I don't think sitting around and having a giant pity party is a good thing, either.  I know some patients who just wallow in the misery, and succumb to the darkness totally - cursing the disease, cursing everyone around them for not understanding the disease, cursing the doctors who try to treat them, cursing the nurses who care for them.   I'm glad I'm not like that - I don't know how anyone considers that living, let alone surviving.  They probably don't, which is why they're so angry and sad.  The truth is, though, you're still in charge of how you live, even if everything isn't working right, and everything sucks. 

So, yeah, I know I'm going to have days, hell I'll have weeks, where I'm a grumpy gus and kind of a downer.  But I look at the big picture, and I think that overall, I handle it all pretty well.  I've got hope for the future, and that's what keeps me going.  My family is amazingly supportive, and I'm lucky as hell for that.

~Steve

Finding a Center

I'm currently enrolled in the Transplant Program at University Hospital in the Upstate Medical Center here in Syracuse, NY.   I live in Syracuse, and all of my family does too.  So, I thought it was important to get enrolled in a transplant program here, in my hometown. 


However, after almost four years on the waiting list, I've been looking into going to a larger, out of state center.  My wife has been gung-ho about the idea, researching all kinds of transplant centers all over the country.  We've been mostly looking at places on the East Coast, so we can stay relatively close to home - but there's some centers out there doing amazing work.  And I'm excited about the prospect of working with one of them - my chances of getting a transplant are much greater at some of these places, and I've been waiting so long - too long, I feel, and I really, really want to try another transplant so I can move forward with my life.

Traveling for health care is a scary prospect, though.  So much to consider - travel expenses, living in another city for a short period of time - my wife has a career here in town, all our family is here.  But people do this all the time - I'm excited, because I think I can put those fears under a blanket, finally, and go for it.  I've got this fire burning in my soul - a passion for life that just can't be quenched, and even though it's severely stifled by the dialysis, I'm still burning to be a better person, a healthier person.... and it's that passion for life that makes one face their fears, put them aside, and do what's right by them.  I haven't always been the best at facing up to what scares me - an ostrich with his head in the sand, perhaps.  But I've gotten better because of my illness - I've learned how to face what I once thought was the unfaceable.  But, man, I couldn't do this alone. 

People often attribute "strength" to their mate in times of trouble - and in the past, I admit the cynical part of me would scoff at this at times.  I just didn't believe that some people were sincere about it.  I felt like "I owe it all to my love...." was bandied about, like a bottle of ketchup at a Fourth of July Barbecue.... but I can honestly say, for me, now - that I don't think I'd have to courage to try and leave home for treatment if I didn't have Jordan.   I'm so unbelievably lucky - having someone not only stand by you during something as maddening as all this, but to be encouraging, supportive and loving... that doesn't come around often enough in this life.  I'm so glad she clung to me when she found me, and I'm glad I bonded to her.  She helps me find my center.... and now, heh, she's helping me find A center....

So, we're still looking now, and trying to decide - but I'm excited about the prospect of working with some other doctors and centers - many of them are very excited to work with a patient like me.  Which makes you feel good, because as a chronic patient, sometimes you feel more like you're a number and somebody's meal ticket than a sick person.

So, here's to the holidays - and the hope and joy that come with them.  I know I'm filled with a new hope this season, and here's to hoping that your holidays are filled with, well, at least good tidings.  I know sometimes that third helping of mashed potatoes is never the "awesome" idea it seemed to be when you scooped them.


~Steve

Wondering who I'll be....

One way they measure kidney function is your output of Creatinine.  In a nutshell, creatinine is a waste product produced by your muscles from any activity.  It's filtered out through your kidneys - it's one of the wastes that you produce and pee out.  So, when you're in End Stage Renal Failure, you don't pee it out and it builds up in your system.  The typical human ranges for serum creatinine are 0.5 to 1.0 mg/dL  for women and 0.7 to 1.2 mg/dL for men. While a baseline serum creatinine of 2.0 mg/dL may indicate normal kidney function in a male body builder, a serum creatinine of 1.2 mg/dL can indicate several renal impairement in an elderly woman. 

So, I often read stories on the net, at other transplant blogs/forums/sites, where recent transplant recipients talk about having a creatinine of 1.1 and how great they feel.  I get a bit wistful; my creatine was around there with my first transplant, and I remember feeling great.  After the procedure that damaged my transplant, my creatine in my damaged kidney hovered between 3 and 3.5.  Not great, but enough to keep me off dialysis.  They say that ever number you go up with creatinine is 100x worse than the last.  (4 is 100 times worse than 3, etc.)  Basically, what one person would clear out of their system in an hour of filtration at 1.1, I'd take 3 to clear out at three.  So, I was still a little rough around the edges, suffering from kidney impairment, but at least I wasn't on dialysis.

My creatinine, normally, has been hovering between 11-13 since I've been on dialysis.  Everyday.  I live with an 11 creatinine.  It's no wonder I feel like crap most of the time.  I dream of the day I have a 1.1 creatinine.  To not feel so tired and rundown....ah.... it's a dream.  I dream of my transplant. 

I think about what kind of person I'd be with a 1.1 creatinine..... how much stuff I'd get done!  I get upset, because I feel like I don't get much done... but I look back on my year, and all I've done despite being on dialysis and having a creatinine level of 11.....
    -  I shot a commercial
    -  I produced a video for the VA Nurses Week
    -  I performed with my band at the Taste of Syracuse
    -  I wrote, directed, shot, and edited a short movie with the help of my family
    -  I managed to get away to camp a couple of times in the summer
    -  I helped my wife remodel the kitchen.

I mean, these are just a few great things I got to do this year.  I can only imagine.... and hope, that I'm still some kind of go-getter when I'm feeling better.

So, I'm gonna keep dreaming of that transplant, and that creatinine level of 1.1..... it seems like such a sweet dream.  Oh, and don't worry friends, I'm still dreaming of peeing all over the great white northern woods when I get my new kidney.  Don't worry about that dream!


~Steve

Shoving a camera up my rear.... or, "My Colonoscopy, Part II".

So, last week, I had another colonoscopy.

I've been having digestive and elimination troubles ever since I went back on dialysis; the first time I was on dialysis in 2003, I had these problems too - but after I got a transplant, they went away.

However, this time, being on dialysis for almost four years has complicated things, and I've developed some kind of irritable bowel disease. It's rather unpleasent; it makes me feel awful all the time, and it's really begun to affect my life in the past six months.  Add the complications from this condition in with being on dialysis and you've got one worn out and useless Steve.

So, a few months back, I got myself a GI doctor - who's just awesome.  I really dig this guy's morbid sense of humor and his clinical work is second to none.  So, a while back, we had a colonoscopy, which I've talked about before - the anesthesiologist messed up, and Steve almost ended up a pile of goo on the table, if not for the intervention of his quick thinking and beautiful wife, Jordan.  Jordan used her super-keen senses of nursing power to determine that my Oxygen saturations were less than optimal, and basically saved my life.  Make sure you buy her a lollipop if you ever meet her.  Anyway, during that colonoscopy, we took a biopsy of the mass he found and thankfully, it wasn't cancer.  But it was still huge, bleeding, and blocking..... just an awful confusing mess.  So, we put me on some medicine to try and shrink it - and I went on my way for a few months.

So cue last week, when I had a follow up colonoscopy.  The mass was only 12 cm inside my old butticus, so we decided I didn't need sedation this time.  That's right folks.  I went, prison style, into my own colonoscopy - watching on screen as a camera invaded my holiest of holeys.  It was an.... experience for sure.  I was glad they used lube, even though it was a little cold.  Anyway, the doc determined that the mass hadn't shrunk or gotten any better from the prednisone and asacol treatment we'd been giving it.  So, it looks like I might have to go in for some colo-rectal surgery to have this removed.

AWESOME.

I mean, great... I just want this resolved.  I don't want this complicating my chances on getting a transplant.

And speaking of that.... ever get the feeling that people are plotting against you?  Sometimes, I feel like the transplant department I'm registered with doesn't have my back.   But that's a rant for another time.

Anyway, I've got pictures of my colonoscopy!   The first two are pictures of above and below the mass.... clean, healthy colon.  In fact, the doc called in Pristine.  But, man.... the rest.... that's what makes me so logy, tired and awful.  This thing gets inflamed, bleeds, makes me tired.... blocks me up.... ugh.

Fun.  I always love trips to the doctor that comes with photos!  Especially ones that look like a weird cave....

Anyway, I'm just glad that we're getting this taken care of.  One more thing to get me on the road to recovery.  Now, after this, we get me a kidney and.... man.... I think I can finally start to take on the world again.

I daydream a lot about being healthy.  It's the dreams that keep me sane in these hard times.   It's the laughs that keep me focused, and it's the friends that keep me from sinking.

Whew

So, the procedure went fine yesterday.  Whew.  No complication.  Gotta admit, I was psyching myself out on this one. 


I'll post more of an update later - just a note to let you know I'm fine!


~Steve

Keeping it light....

A salesman walking along the beach found a bottle. When he rubbed it, lo and behold, a genie appeared.

“I will grant you three wishes,” announced the genie. “But since Satan still hates me, for every wish you make, your rival gets the wish as well — only double.”

The salesman thought about this for a while. “For my first wish, I would like ten million dollars,” he announced.

Instantly the genie gave him a Swiss bank account number and assured the man that $10,000,000 had been deposited. “But your rival has just received $20,000,000,” the genie said.

“I’ve always wanted a Ferrari,” the salesman said.

Instantly a Ferrari appeared. “But your rival has just received two Ferrari's,” the genie said. “And what is your last wish?”

“Well,” said the salesman, “I’ve always wanted to donate a kidney for transplant.”

---------------------------------------

This made me chuckle.  I'm a bundle of nerves today.  Procedure tomorrow.  Just have a weird feeling.

~Steve

Fears

I have to go to the hospital in couple days for a minor procedure.  It's no big deal, really; I've had it done before - though last time I did, it was performed in an outpatient center and something went horribly wrong and I ended up being rushed to the hospital in an ambulance.  If it wasn't for the quick thinking of my wife, who's a nurse and asked to be in the room, I would have coded out.  Instead, I woke up from the procedure coughing out massive amounts of frothy blood.  When asked how I felt, in the midst of throwing blood all over the room, I calmly said "I think I can feel the effects of the medicine starting to abate."  Always trying to impress, I am.

So, this time, my doctor is doing the procedure in the hospital to ensure that if anything goes wrong, I'm in the best place for emergency treatment.  That's what it's like with me; I have so many co-morbidity's, that simple procedures can become life-threatening situations.  I'm used to that feeling now; the first time I really encountered it was back when I had my first transplant, and I had to go in for a "minor procedure" that I would "be out for the weekend."  I spent almost two months in the hospital after that one and almost completely lost my transplanted kidney.

So, since then, I have always been a little scared when I have to have something done.  It's normal for anyone to feel nervous about medical procedures.  Medicine and surgery is a pretty amazing thing; it's come so far in the last 100 years - it used to be such a barbarous practice.  It's amazing what they can do now - and it's amazing what the body can endure.  But it's funny; sometimes people endure the most horrific and difficult situations and they come through clean, and other times it's just a slight, little mistake that kills them.

I've survived some pretty crazy and intense situations.  I used to feel so bad all the time, I thought I was just some kind of weakling.  Turns out, I'm actually pretty strong - I kept myself going through things that either slowed down or killed other people.  So, on one hand - I'm pretty proud of the constitution I've had for a long time. 

Still,  I get scared.   I'm not the most afraid of the procedure going wrong; sometimes shit happens, they say.  What I'm scared about is what I won't get a chance to accomplish.  There's always something more to do in life - and the thought of not being able to achieve goals that I dream about, still, scares me more than anything else.  I'm scared of leaving people behind - leaving them behind without letting them know, honestly, how much they meant to me.  And it's not just "saying" it - it's the things I do for them.  I still have a lot to do for people to show them how much I love them and how much they mean to me.  The fear of not being able to do that is palpable for me.  And, in the days before the "procedure", these thoughts consume me.

It's not enough that we say we love each other - although that's an amazing thing, and a good start - we have to live that way as well.  Our actions must speak as loud as our words - and this is often the hardest maxim to live up to in life.  But it's wanting that - wanting the better - that keeps me going and keeps me strong in the face of these hard times.

So, I'm waiting for the date - trying not to let the fear wash over me, but also keeping in focus what's important to me. 

~Steve

Frustration....

I can't speak for everyone on dialysis, but I know for me a big part of being a dialysis patient is dealing with frustration.

Life, in general, is full of frustration but you add in the complexities of living with ESRD and being on dialysis and you've got a giant heaping bowl of frustration that you have to swallow every day. 

Sometimes, what people don't understand about the disease is what's really frustrating.  When I talk to people, a lot of times they say "What did you do?" when I tell them I have kidney failure.  Or they imply that I drank and drugged my way to lost kidneys.  Sometimes, there's a lot of judgement.  Or people will often come up to you with some kind of holistic miracle cure - I've been offered so many snake oil pills and teas that will make you "feel better" but they don't realize that my kidneys are DEAD and unless you have some kind of medicine made from the blood of Jesus, you're not going to revive my dead kidneys.  In fact, because I have no kidneys to filter out anything from my blood, if I took these herbal supplements or drank this strange tea, it would just stay in my blood and toxify me.  Yay. 

Or, my favorite, is when I say I'm still on dialysis and people say "Oh, you still have to do that?"   Dialysis is rarely a temporary thing.  In extreme cases, it can be - when people have some kind of acute renal shut down, but when your kidneys have atrophied and died, you're having some kind of renal replacement therapy for the rest of your life.  It's dialysis or die, baby!

Or, of course, there is the transplant.  But, again, highly misunderstood.  A transplant isn't a miracle cure, but rather another form of treatment.  When I had my first transplant, I often heard this...."Oh, but you're better now, right?"

"Oh, but your better now right?"  is the nails on the chalkboard that ESRD patients have to deal with.  People have this innate need for people to fully recover when they get sick.  I can't blame them - part of it's love and concern for the patient, and part of it's concern for their own health and mortality.  I suppose when you're "healthy", the thought of being "sick" is one the most mortifying concepts.  I know it was for me before I got diagnosed.  But seriously, in my chats with dialysis patients, a phrase we hate to hear is "Oh, but you're better now, right??"

Yes, frustration and being misunderstood.  Also, frustration at the waiting.  Sometimes being on dialysis feels like waiting to die.  You're attached to this giant friggin machine, it spins your blood and fluids and pumps it back into you.  Basically, you're this cyborg who can't move for hours on end, and you feel useless as shit when you're done.  That's frustrating, especially when you're trying to live a life!  And it's never ending.... you don't get a break.  You don't get to say.... "Ah!  A week off!  I'm going to go dancing!"  It's relentless, it's monotonous and it never changes. 

I feel like I wait by the phone, too - though I honestly don't look for the "call" any more.  But part of me hopes that every time my phone rings, it's someone to say "we've got a kidney.... get to the hospital...."  It reminds me of the Greek Myth of Tantalus.... always sitting neck deep in a pool of water, but when I try to reach out to get a drink of water - it all recedes.


How do I deal with frustration?  Heh.  Writing helps.  Telling jokes.  Playing my guitar.  Listening to my wife.  I'm lucky - I have the most amazing partner in this.  Not everyone's so lucky. 

~Steve

Vacation

One of the reasons my wife and I decided to switch to doing home hemodialysis was that we could, potentially, take the machine out of the house and on vacation with us.  With our wedding and honeymoon looming, we thought this would be a great option.  Normally, traveling on dialysis includes setting up dialysis at another dialysis center, local to the location of your vacation - and going to a strange center is always a little weird.  But if we could do it ourselves, in the comfort of our own room, we'd have more time together and a bit more freedom.

So, as I wrote about earlier, we set off and trained to use the NxStage System One.  It's been pretty awesome - but one of the best things was we took it on our honeymoon.

We were lucky enough to have our honeymoon out on Lake George, NY - at this glorious hotel called "The Sagamore".  It's one of those old-time revival hotels that's on a huge sprawling manor.... it's quite amazing.  The Today Show was actually up broadcasting live from there the day we checked in.  The Hotel had just been renovated, and it was beautiful.  We were actually one of the first people to stay in the new rooms in the new wing.  The hotel was very accommodating to our needs - storing all my dialysis supplies in a little closet in the hall.  There was quite a few boxes of Dialysate Fluid needed for treatment -  I used 25 Liters a treatment, and they came in 5L bags, so I'd need three every treatment.  Two came in a box and the company sent WAY more than we needed!  But, we had a little table in our room to hold the machine, and I was able to lie on the bed, and get diaylized.  We'd spend the time watching TV, hanging out and ordering room service.  All things considered, if you have to do dialysis, it wasn't a bad way to spend it.

Now, the previous fall, I had a chance to co-produce and co-direct a Public Service Announcement for Reel Productions of Albany, NY.  I worked with a great guy named Joe Bashant, who had come up with an anti-drinking and driving spot.  We spent two days filming - one in Albany and one in a morgue in Pittsfield, MA - and had a good time doing it.  We finished the commercial, Joe edited it, and worked on getting it shown nationally!  My first national commercial.  I was very excited, and a few weeks prior, Joe told me it would start airing.  I was constantly searching for it on TV, but I never found it.  Then, on my honeymoon, we were watching TV - the FX network as I recall, and suddenly - it came on!  Jordan said, "Look!  It's your commercial!"  It was a fun and surreal moment, for sure - one I'd probably have missed if we didn't have to stay in the room and do dialysis.  So, I always look at that as a good thing.

We had an amazing time on our trip.  Lake George is gorgeous in the summer, and it's nestled right in the Adirondack Mountains of New York, which is one of my favorite places on Earth.  My family has a bit of land on the Western Border - and at the end of the week of our Honeymoon, my family's annual "Clambake" was to take place.  So, we loaded up our car, bid adieu to the Sagamore - and drove across the Adirondack Park to get to camp.  We hopped on Rt. 28, and had a great trip.  In fact, I recommend that anyone take a trip across 28 from around Lake George to Old Forge.  It's just amazing.

We got to camp, and celebrated not only our recent marriage with the family, but just the general old good times of the Clambake.  We even did a session of dialysis in my parents cabin in the woods.  My father had built a solar powered battery system (with a backup generator) that allowed us to power the NxStage Machine.  Jordan and I did dialysis in the woods.  It was pretty surreal!

All in all, I'd say the NxStage Machine is pretty awesome.  Doing dialysis at home does require a lot of work on your behalf, but I like the feeling of being active in my own care.  I at least feel like I have something to do with keeping myself alive, rather than just showing up at a center saying "take care of me!!!".

The NxStage System One

The Sagamore Hotel

Jordan and I, riding in a horse carriage on our honeymoon.

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

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