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, October 8, 2011

The Guilt

Having had my new kidney for about two months now, I've really come to love and appreciate the simple ability to urinate again.  When you've been on dialysis for a long time, you forget what it's like.  Seriously.  It seems like such a basic (and slightly disgusting) part of life, but when the ability is gone..... you forget.

It's amazing.  Really.  And I feel great everytime I do it.

Yet, there is a sense of guilt in me - for my former comrades in dialysis.  The ones still stuck in the chair.  Still stuck with the needles.  Still stuck with the PD cath's. 

I wish you could all feel what I'm feeling. 

Kidney disease - dialysis - is horrible.  It's absolutely, soul drainingly awful.  You're just.... lingering.  Waiting... either for a miracle or for the final curtain.  Seriously.  Sounds morbid, but that's it.  And the shame of it is that most people really do not understand how diabilitating the disease is.  A lot of people think you just "go do dialysis" and you're all better.  It's just a machine keeping you hobbling along until the next treatment.  It never ends.  People languish for years - becoming former shadows of themselves.  And it's not just adults - there are CHILDREN on dialysis.  That thought breaks my heart.

So, yeah, I feel some guilt that I was given the luck of the draw, and I have a chance at a better life.  A transplant isn't a cure; as I've said.  It's just another form of treatment - a much, much better one.  But it's not a cure.

We need to support the sciences that will unlock keys to not only reverse nephrotic damage and heal the nephrons in the kidneys, but also sciences that would allow doctors and scientists to regrow kidneys for people.  Someday, probably long after I've sailed off this planet, they will be able to simply solve these problems.  But the work has to be done.  There's too many people suffering.

I don't know just what to do yet.  But I'll found out.  I will find out how I, and others, can support the promotion of kidney research.  I will find out how we can support the patients who are on now, and maybe ease their burden some.  I want to live my new life to the fullest for myself and my family - but I also feel that I need to give back, and help others find some peace.  Otherwise, I'd feel unworthy of the gift I've been given.


~Steve

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