I started this blog in spring of ‘09 before embarking on a ridiculous relay that involved 2 vans carrying 12 people who ran 199 miles nonstop through the night, fog and rain (feel free to start at the oldest post to relive it blow by stinky blow). And now it seems appropriate to bring this back to the surface as I begin yet another running journey…my first full marathon, but more on that later.
This past December I was officially diagnosed with Polycycstic Kidney Disease (PKD). Although the news was devastating it did not come as a shock. The fact that I have this autosomal-dominate disease means I got it from a parent that has it, in this case, my mother. The best thing about this diagnosis is I’ve had had a first row seat to see exactly what it entails so I kind of know the drill, it’s also the worst thing too. I have no desire to face the physical, emotional and mental challenges my mother faced as a result of PKD, but unfortunately it’s not in my cards, I drew the short end of the genetic stick. So what does it mean for me? Well, that I may lose kidney function as the cysts replace once healthy kidney tissue until I need dialysis or a full kidney transplant to survive. You know what? That sucks. Yes, I know there are worse diseases out there and I should be thankful that I don’t have it worse. And you know what? I am thankful, but it still sucks.
When I first found out that I’ve likely got some serious physical issues on my horizon. I went through all sorts of stages of denial, depression and anger. But most of all I wanted to fight it. I wanted some sort of treatment or therapy that was going to change the outcome, but guess what? There isn’t any. Currently, PKD is untreatable and incurable. So what to do with all that energy I have to fight and conquer? Run. So that’s what I’m going to do. I’m going to run the California International Marathon in December, and I’m going to run it in support of the PKD Foundation (www.pkdcure.org, @PKDFoundation). Why? Because I can right now, and because bringing awareness to this disease to help find a cure is the only way I can fight.
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I'm glad to see you writing again
ReplyDeleteKick ass and take names! You make us all proud.
ReplyDeleteEmily, I'm very sorry and understand. I, too, have PKD! I admire your boldness and willingness to fight.
ReplyDeleteThere are some ways to slow down the growth of the cysts and extend the life of the kidneys. Knowledge is power. I stuck my head in the sand for years and didn't want to think about the condition and rarely talked about it. Your post encouraged me to be more open. Thank you for writing!
Like you, I work hard and play hard and won't give up the obsession to "fight and conquer."
So, let's do a bike ride in support of the PKD Foundation!
I'm 38 now, and I've known I've had PKD since the age of 18, when my mom (who had PKD) made me have an ultrasound on my kidneys. They found a few cysts and my mom was more upset than me! Like you, I also had to watch my mom suffer through PKD, until her passing at the age of 64. My grandmother died at the age of 48 from PKD and my uncle also passed from complications of PKD before the age of 60. Sometimes I wish I could claim ignorance, but like you, as long as I am healthy, I want to do as much as I can NOW! Cheers to you!
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