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Friday, 12 October 2012

Kidney Disease, Nothing Funny about that

There are all kinds of horrible diseases in this world.  Large, far reaching diseases like cancer and AIDS.  These are so prevalent in todays society that it would be difficult to find someone who has NOT in some way been affected by it.  It is estimated by the World Heath Organization that 7.6 million+ people die worldwide ever year from cancer.  There are over 200 different types of cancer that the human body can be afflicted with, and there are only three different treatments.  Naturally because of the scope and scale of this disease, it gets lots of exposer.  Cancer research, treatment trials, fund raisers, Facebook slacktivism, celebrity spokespeople, etc.  It’s ubiquitous as far as diseases go.  You ask anyone to quickly name a disease, cancer will probably be their answer.  It deservers the attention it gets.

As deadly as it is, there is one disease that can overshadow even cancer’s far reaching grasp, and that would be the disease that YOU have.

Everyone no doubt has heard of Kidney disease, after all it’s mortality rate is quiet respectable at around 1.2 million deaths per year, worldwide.  The term “Kidney disease” is kind of a catch all for many distinct different afflictions that  just happen to target the kidneys.  Some can be immediately fatal, like acute kidney failure, some are simply extremely painful but otherwise harmless, like kidney stones.  The most common kind however, is chronic kidney disease.  It’s a slow, steady, inevitable march towards renal failure.  It’s insidiousness lies in the fact that someone can have a disease their whole life and not know it until it’s too late.  No symptoms, no side effects.

This is what I have, and as selfish as it may sound, to me, it is the most important disease.  To be more specific, I have polycystic kidney disorder, or PKD for short.  There are two versions of this disease, but by far the most common type is the autosomal dominant version.  It’s transmitted genetically from parent to child at an alarming rate of a 50% chance.  PKD is widely noted as being the most life-threatening genetically past on disorder.  Basically what happens is your kidneys start to grow cysts, usually this starts at a fairly young age.  Then, as you age you start to get cysts on your cysts.  Your kidneys start  to balloon out as you age, getting up to four or five times their original size.  From here there is a whole shopping list of symptoms that cab occur.  Oddly though, patients my experience some none or even all of them.  Nobody really knows why the extreme divergence.

These include mild to sever back and side pain, as well as headaches.  Urinary tract infections, hematuria, liver and pancreas cysts, abnormal heart valves, high blood pressure, kidney stones, aneurysms, exhaustion and diverticulosis.  Or course, in addition your kidneys can slowly start the grim march toward failure.  I say “can” because in some lucky people, the kidneys never do fail.  They can live a relatively normal healthy life.  Once again, nobody seems to have an answer as to why that is.  Noticing a trend?  Nobody seems to know much of anything about this disease, I’ve even got to doctors and had to explain to them what it was.
One side effect that you won’t read in any medical text or website is this.  If you have this disease, then it is very likely that several if not all of your family members do too.  This not only means you will not be getting a transplant from them, but you could potentially have to watch all of your loved ones slowly degrading into renal failure.  My Grandmother ultimately died from it when I was very young.  My mother has it, my sister has it, my brother has it, as well as a whole cavalcade of cousins, aunts, uncles, nieces and nephews. 

Every day I thank the anonymous person who sign up to donate their organs when they past.  That person gave my mother a kidney.  Such a simply thing, and yet if you were to do it, you will have a profound impact on someone’s life, even if you never know it.

Why am I writing this?  I feel like this is an intensely personal thing, more suited to private journal than a public blog.  I think maybe because I feel the need to shine some light on the disease, even though nobody reads this damn thing.  Possibly it’s because I am scared, terrified in fact.  I am one of the unlucky ones, I have been blesses with almost every nasty symptom that my kidneys can throw at me.  I’m scared, but I need to face up to it, I have no choice in the matter.  This is one way for me to face up to that fear.  Call it out publicly and say, “fuck you PKD!”  I think it’s a general rule that if your are crying as you are typing, your probably shouldn’t publish it, but you know, fuck it. 


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