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.

Thursday, September 30, 2010

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.


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