Winter and Cabin Fever.

Ever since I was diagnosed with ESRD, Winters have been hard on me.  It's funny; before I got sick, I was the dude who still wore his cargo shorts in winter.  I didn't mind the cold - but with the severe anemia I suffer from, the cold just stops me dead in my tracks.  I really tend to hibernate.   I don't like to leave the house unless I have to, and I'm usually bundled up in a few blankets around the house!

So I try to use the winter to indulge all the projects I like to do indoors - I've spent some time trying to keep up with my writing, and working on some ideas for short films I want to shoot later in the year.  I also run a small independent company that makes video games, so that eats up a lot of my time.

But still, you get cabin fever - especially when you do dialysis in your own home.  I'm waiting with such anticipation for the spring and warmer weather.

On the health front, in the next month, I think  we're going to start applying to other centers for transplants.  I think a fresh start in a new center is what I need.  Hopefully we can get the ball rolling on a transplant for me.  I desperately need one.  It's getting so much harder, day to day - I read stories about people dying while on the waiting list for organs, and I get really scared that I could become one of those statistics.  It scares me because I've got so much more living to do - I've got so many things left to do.... I don't want to get off the train while I'm just sitting around, waiting.

I know it sounds morbid, but it is a real fact and concern in my life.  I really am one of those people who's waiting for an organ, or I will die.  That's a hard fact to live with, but it also motivates the hell out of me to stay alive!

~Steve

The Cost of Dialysis

I've been on dialysis since 2003, and yet in all those years, I'm still amazed at the cost of treatment.

We do get decent health care for ESRD in our country, thankfully - but this disease is no joke.  ESRD is an automatic qualifier for Medicare, and most patients can get Medicaid as well.  I get an itemized list, however, every month from my Medicare service provider, and it's amazing the cost that goes into keeping me alive.

Here's a sample of some costs.

9/01/10-9/29/10

Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26
Dialysis Procedure                              $1,259.26

Claim Total                $55,945.40


Syringe w/o needle(A4657)                      $41.99
Syringe w/o needle(A4657)                      $41.99
Syringe w/o needle(A4657)                      $41.99
Syringe w/o needle(A4657)                      $41.99
Syringe w/o needle(A4657)                      $41.99  251.94
Syringe w/o needle(A4657)                      $41.99
Epoetin Alfa (EPOGEN) 100 units ESRD (q4081)    $7,372.00
Epoetin Alfa (EPOGEN) 100 units ESRD (q4081)    $7,372.00
Epoetin Alfa (EPOGEN) 100 units ESRD (q4081)    $7,372.00
Epoetin Alfa (EPOGEN) 100 units ESRD (q4081)    $7,372.00
Epoetin Alfa (EPOGEN) 100 units ESRD (q4081)    $7,372.00
Epoetin Alfa (EPOGEN) 100 units ESRD (q4081)    $7,372.00


Claim Total - $44,483.94


10/01/10 - 10/31/10

Neprology Associates of Syracuse - 1.0 ESRD home pt, office visit                              $425.00



That's just an average month of dialysis costs.  I am exteremly anemic, and the Epogen helps build my redblood cells and keeps me from getting tired.  I'm on a lot of it, and as you can see - it's VERY expensive.

People with ESRD are lucky enough to get decent care here, but there are still fights and arguments over it all the time.  Arguments over quality of life, the quality of lives saved.  I can tell you one thing, at least for me - I don't take all this health care for granted.   I'm going to live through this, and be the best and most productive member of society I can be.  So, to those of you who work hard, pay taxes and bitch about having to pay for other people's health care, remember - there are people out there who are (trying) to be decent citizens, and we DO appreciate the hard work and sacrafice you contribute to help keep us alive.  If you ever feel bad about it, and you're friends with me, know that in a way you're helping me.


~Steve

Wait, cancel that.....

Well, we're not going to Florida this week.

Too many snafus with setting up dialysis care while I'm there - so we're postponing the trip until we can organize it up better.  Such are the pitfalls of being on dialysis and wanting to travel.

In other news, I'm feeling much better lately, and it looks like my red-blood cell count is rising.  So, still good news on the horizon.

Soon, though. we'll taste that Florida Sun.....


~Steve

Getting Ready To Travel

Well, the wife and I are going to Orlando, FL, next week.  We're getting ready for the trip - and there's a lot of work that goes into it when you're on dialysis.

I've not traveled so far while on dialysis, or been on a plane in years!  Making sure we get the machine and all the supplies there is weighing heavily on my mind, but I'm taking it one step at a time.  I gotta admit, it's causing me some anxiety - I'm the kind of person who likes to make sure all the details are taken care of.  But I'm excited at the proposition of adventure.


I really long for the time where if we want to go away, we just pack and go! 


~Steve

First Night

January 1st.

2003 - the first day I ever did dialysis.  I was in the ICU.... they had just put a "port" in my chest, and hooked me up to this weird looking machine next to my bed.  Soon, the tubes from my chest ran red with my blood, and I was on my way to having clean blood for the first time in a long time.

It took me a few days to recover, but I bounced back pretty hard.  I was out of the hospital in less than a week, and I remember I went to a local bar, and sang "Stayin' Alive" at Karaoke.  I was determined to be strong, do the treatments, and live through it.

It's been a long time.  Eight years.  I spent the first year on dialysis, and then thankfully had a transplant for three.  The last four years, I've spent on dialysis.

And I have to say: it's hard.  And it's been getting harder.  I have to admit that.   The thing about this disease is that it's constant.  There's really no respite.  I have days where I feel better, but my feeling better is probably like your average Joe's miserable day.  It was much easier in those earlier days to power through things, but I really have no reserves left.  Everyday is a struggle - and for many people on dialysis, it's like this.

I think that many dialysis and ESRD patients get frustrated at the lack of knowledge about our disease and the treatment.  Many people don't understand dialysis, or the nature of kidney disease - a lot of people look on it like diabetes - you take a shot or something and you're better.  You "do" dialysis and you're better.  Doesn't work like that.  And sometimes, even I have to remember that.

My last eight years have been interesting - so many people have come into my life and become a part of all of this.  Many have given their time and resources to keep me alive, and for that - I'm overwhelmed.   In a good way.  I just marvel at all the people that come together to ensure my well being - friends, family and medical professionals.  I'm lucky.  I have a giant network of awesome people that keep me alive and bolster me when I need it.  Many ESRD patients don't.

I hope, in the future, I can do my part to bring some kind of positive attention to the plight of ESRD and kidney dialysis patients.  But for now, I'm struggling to make it day to day.

Thanks to all who make my life as great as it is.  I'll see you 'round these parts.

Happy New Year.


~Steve