Kidney Disease and Living

Over forty years ago, my stepfather went to work with what he thought was the end of a bout of 'flu, and collapsed. He spent two days in a semi coma, then was flown to another hospital where they discovered that his kidneys had totally failed.

End stage renal disease - kidney failure - isn't something one wants to think about, but sometimes you don't have a choice. Life comes at you like a roaring lion and you face it - or die.

It's better to be kept alive with a machine than to die young; it was a huge machine, installed in a bedroom at home. My mother took classes to "put him on" the machine and "take him off." Three days a week, he stayed in his room nearly all day. First, getting ready, then six hours hooked up to the machine, then getting off and cleaning everything up for the next time. The smell of blood and bleach always seemed to hang in the air in his room. I hated the smell. It reminded me of his frailty and it scared me.

I panicked when the doctor told me matter of factly that my kidneys were slowing down. I could only remember that room and my stepfather, pale and tired after an all day session. I thought of his many trips to the hospital, sometimes needing quick attention; other times, signing himself in for surgery for yet another stint. His veins collapsed, one by one, from the needles used to transfer his blood back and forth from the machine to his body and were replaced by bovine veins - first in each of his arms, then in his legs.

He wasted away to a thin shadow of what he used to be. Another machine provided oxygen for him at home. When he went outside, he trundled a tank of oxygen behind him on a small dolly. Over twenty years, he lived this way, until his heart gave out.

This was not what I wanted to look forward to. There was so much I wanted to do, to see, to try, to live...

I'm still here to to tell you that if you have, or someone you love has, end stage renal disease, it's not the end of the world. Medicine has made some wonderful changes since my father was on hemodialysis. There is now peritoneal dialysis, in some ways much easier and done at home without having to replumb and rebuild a room for it.

And there is now the internet. The internet offers support in many ways we couldn't even dream about then, not the least of which are forums where you can connect with other kidney patients. You can learn what to expect, physically as well as emotionally and you'll learn that life goes on.

I have a feeling that Daddy would have cried for relief to find someone else who knew what he was going through.

My kidneys haven't failed yet and I may die of something else first. I can hope so, strange as that sounds. Yes, there's support. Yes, there have been major improvements in the treatment of this disease, but there is no cure.

None. Yet.