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.

Monday, February 28, 2011

Riding the Wave

So, I've tried to take this month and recouperate as best I can.  I guess that I was much more ill than I let on - I have that problem.  I tend to solider on and power through things without really letting on how bad I'm doing.  After I got my blood transfusion, I started to feel much better.

I'm still having a lot of problems with my bowel disease; I'm still having bleeding and such.  My GI doctor is stymied, and he wants to refer me to Mt. Sinai Hospital for a second opinion.  I know I'm going to get smacked for this by my wife, but I really don't hold out hope that they'll be able to do anything for me or tell me anything that the doctors I've seen haven't told me.  To really treat this, I need a functioning kidney that can regulate the fluid level in my body... dialysis is literally killing me - ripping apart my insides.

I've also been on dialysis now for four years.  That's four straight years.  Four years of my young life.  That's an entire trip through college.  (If you're not me.  I stuck around that bad boy for a few more years than I should have!) 

I mean, a lot of wonderful things happened in those four years - I managed to get married to a girl I'm just crazy about, and I got to play a lot of music, make a movie with my family.... I've managed to live as well as I can in those four years.  But it's been four years of being on that waiting list - the ache of hoping I get a kidney.  It's so morbid, when you have the thought in the back of your head "I hope someone died today and donated their organs - and I'm a match....."  I used to hold my phone a lot, waiting for "that" call.  I don't any more. 

Well, I hope I feel better.  I think Spring will do me good, and it's right around the corner.  So much to do, so little energy to do it with..... sigh.



  1. I've been thinking about you Steve. Hope you are feeling better. Soon the nice weather will be here and hopefully that will help you feel a little better. Just wanted you to know there are people out there that care :)

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