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