The Adventures of Kidney Boy

A Journal About Living With End Stage Renal Disease. Dialysis. Transplants. Love. Family. Friends. The Unsung Donor. This is my life, from the end of a needle to the bottom of a pill bottle.

Saturday, January 1, 2011

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

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