Here's my story from South Carolina.

HouseOfDialysis

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Here's my story from South Carolina.

« on: April 18, 2011, 04:51:23 PM »

I was thinking back to the very first time I ever heard the words, "You have kidney disease and this will ultimately lead to failure of the organs in all likelihood." I think it was a good five minutes before I had an actual thought and not just seeing the white of being blindsided by something I should have seen coming. I had just heard my biopsy results and I had a confirmed diagnosis of Alport Syndrome(AS).

I had never heard of AS before but imagiine being in the prime of your life, just graduated with a college degree, newly married, thinking of starting a family, and then hearing that by age fifty, you may very well be deaf, possibly blind, and in complete kidney failure. At that moment, I went through every instance of life where I had done anything to deserve this sentence. What crime in my current or past life had I done to need these outcomes to balance for atonement? This did grow into a momentary depression for about a week. I remember being solemn to myself. I don't believe my wife noticed anything different about me at the time.I still had a Devil May Care attitude about it, but I suddenly had a new appreciation for life and that which I had grown up with already knowing about. My mother went into kidney failure in her forties. I watched maybe less attentative then I should have, as my mother was on hemodialysis for three years. Seeing her washed out after most of her treatments, I grew to despise the dialysis clinic. Being 10 years old and seeing your 40 year old mother having to go into a room with people who look like they are in God's Waiting Room caused more than trepidation in my young mind. My mother's fistula graft alone was something I couldn't even bring myself to look at. Twenty four years later, I look down at my very own fistula as a thing of wonder and assistance. It's funny how perspectives can change at the ends of a pair of 14 gauge needles.

In that one week, I ran scenarios through my head. How long I would live, what things I wanted to accomplish before two of my senses would fail me like my renal system would, and just what was life all about anyhow. Somewhere in that span of time, I compared and contrasted my condition with that of a cancer patient, someone with heart disease, brain tumors, and various other terminal ailments. Then, like a wet sack of hammers, it hit me like a rock thrown from in a glass house... We're all terminal.

To some that may come across as fatalistic or pessmisstic and not quite made for inspirational uplifting, but I find it quite the contrary. To my mind, it is quite a leveling and centering thought and an eye opening perspective. No matter even if I was the pinnacle of human health and physical conditioning, this mechanism that is my body will break down and decline in time, as does every living organism. We are finite manifestations of carbon that can not be destroyed as matter, but as sentient beings with a history relevant to other sentient beings we will no longer exist.

I am by no means embracing my end or that of others, I think it only heightens my appreciation for living not just my own life, but for the collective human will within us all. For those whose quality of life is lesser than our own, do they not take solace in their own lives? Is not a child with mental retardation, immobile except for by wheelchair, still able to laugh and smile at the world they live within? Can not a Stage IV cancer patient still impart a warm and compassionate embrace to someone who just learned they have a growth? My point is that nothing is a death sentence, because death isn't avoidable. We all will breathe a last breath, but I think I can speak for a at least a few billion folks in that we aren't ready to rush off to it. Life is a biological function, nothing more. But LIVING and EXPERIENCE are things that go beyond just mere existence. I am reluctant to quote that noted pop star, Tim McGraw, but he said it best when he sang with a twang, "Live like you were dying." It's often said that we'll never appreciate what we have until it's gone. I disagree. You'll cherish things much more when you KNOW they are going versus when they are actually gone.

I had a confirmed biopsy in 2004, fistula surgery in 2010, PD catheter installed in 2011 and started CAPD on February 21st, 2011. I am now moving towards CCPD next week and have been on the transplant list since June 2010. I have great support from my wife and my four year old son is walking smile factory. I'm blessed to say the least.

This may be one more lost voice in a cacophony of errands to run, bills to pay, and meme quizzes to take, but I can't help but to echo the call of Mr. McGraw. I encourage everyone, not just the ones with biological failures, to forgive, love, assist, and understand more each day to get the most out of others and ourselves. Life is too short to not live it, because we will all come to the end of our lines. Be sure you leave a few good marks on the world. Start today!

Love and Hope,
HouseOfDialysis


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Diagnosed with Alport Syndrome in 2004.
AV fistula surgery June 9th, 2010.
PD Catheter surgery February 7th, 2011.
Began CAPD on February 21st, 2011.
Began CCPD on April 29th, 2011.
On Transplant List since June 2010.

willowtreewren

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