So when people are diagnosed with pretty much anything, the first reaction of most is probably fear. That scale of that fear is generally commensurate with the seriousness of the diagnosis.
When I was diagnosed with PolyCystic Kidney Disease (PKD) it was basically an afterthought. You see, I was 25 years old and visiting my urologist because my right testicle had grown to the size of a medium tropical fruit in a really short time. And while on one hand that was impressive to a 25 year old, it was also probably not great news biologically.
Turns out, after testing, that my urologist told me and my dad that I had testicular cancer and needed to take care of that asap. “And, by the way, you also have Polycystic Kidney disease,” he mentioned.
Those unfortunate enough to have heard a cancer diagnosis can attest that you don’t hear much else the doctor says after the “C” word. Oh sure, I physically “heard” that I also had something call Polycystic Kidney Disease, but did it register? — Um – no – not really. He probably briefly mentioned what it was and that it would be something I would not have to worry about or deal with for a long time. I think I may remember something like that – or not, but our attention quickly turned back to the cancer.
So we focussed on the cancer that day and all the hazy, scary, mind numbing days afterward until the cancer was defeated (yay) and put in the trash heap where all cancer should ultimately go to die.
And sometime after the years of great post cancer check-ups and, eventually, the adrenaline rush of being told I was the victor over cancer — somewhere amid that growing, learning and discovering of the mid-twenties — it occurred to me to ask my doctor once again about this Poly Cycstic Kidney thingee that another doctor had brought up to me so many months and years earlier.
And I learned about it – enough to know I had to check it with blood tests once a year. I learned that eventually, barring a cure, in my 50s or 60s I might need a kidney transplant. Well, ok, I could deal with that because when you are 29, your 60s are about as difficult to conceive of as life on Mars. So I shoved it to the back of my mind and paid attention to living my life – a wise decision I support to this day.
Eventually as my kidney function numbers showed signs of a strain, my urologist visits turned into nephrologist visits – first annually, then bi-annually, now three times yearly. I will freely admit that I hit a pothole after tuning 50 – realizing that I had arrived here in my 50s and there still was not a cure for this thing. I felt like I had just been diagnosed with something I had in reality for my entire life. I became somewhat fearful which is not a state conducive to progress and accomplishment.
With intense reflection and some education, I began finding a way home from fear. I came to see that, while this disease is something that must be addressed, kidney transplant is not science fiction. It is performed successfully daily across the country. This PKD is truly something that can be managed with transplant, medications and monitoring over a rewarding, successful life.
But, the key to making it all work is the replacement kidney so, after decades of good and not so good times (like everyone else) that fact brings me right here. My “key to making it all work” is, somewhat, all of you – not necessarily you being a donor to me (though that would not be a bad thing at all), but on you helping me search for a donor by spreading the word. I need you to share this website and my story on social media, bring it up at work and play, in clubs and organizations, post something in your business or business website, shout it from the rooftops if you feel the desire.
My medical professionals have assured me that donors come from the strangest places sometimes. One person wore a tee shirt that said he needed a kidney on his trip to DisneyWorld, and wouldn’t you know it, someone contacted him and donated (I guess it truly is the happiest place on Earth).
And know that everything you do is greatly appreciated!