Do What You Can – and Keep Smiling
This is a guest post.
When a disease kills a number of your family members, and threatens your life and the lives of others you love, the disease is asking you a question: What are you going to do about me?
Many possible answers present themselves:
(1) Try to enjoy your life without thinking about the disease, and hope it doesn’t kill you or anyone else.
(2) Become obsessed with the disease, letting its looming threat drain your joy.
(3) Keep your mouth shut, hoping that your silence can prevent people from feeling sorry for you / worrying for you / declining to hire you / declining to date you.
(4) Fight back, without losing your smile and sense of humor.
At 19 I learned that in addition to height and an interest in reading, I had also inherited polycystic kidney disease from my father. Cysts, or pockets of fluid, grow on and throughout both kidneys of people with PKD, often causing high blood pressure, aneurysms and renal failure by the mid-40s or early 50s.
My grandfather, great-grandfather and great-great-grandfather had all dropped dead of heart attacks in their mid-40s. (My father had died at 42, though not of PKD; he drowned.) I am now 41. For many years I tried not to think about PKD. I definitely didn’t talk about it. I hoped that science would advance in time to save me and my siblings.
Then my first cousin died at 35. A great guy, Mike was just five months older than I was. We had grown up together. PKD gave him high blood pressure and an aneurysm, and when he died he left two young children and many other shocked relatives behind. I decided I couldn’t wait for science: I had to give science a hand. I wanted to help fund the research that would cure PKD, saving not just me, but two of my siblings, my cousin, their kids, and the other 600,000 Americans — one in every 500 people you see — who have PKD.
Doing this makes me feel good. I’m glad to know that my small contribution is much better than nothing. It lightens my burden to meet others who are also fighting PKD. And raising money to fight PKD has also taught me interesting things about people I wouldn’t otherwise have learned. Some close friends whose help I expected have given nothing, while many people I knew much less well have given a great deal, blowing me away with their generosity. I’ve heard similar things from other fundraisers. People are funny.
If you’d like to help, too, please check out my music video at www.kennythekidney.com.
If it makes you smile at least once, please pass it on to a friend or two.
And if you can afford it, please click the “Donate” button and donate $5 or more to help cure PKD. (Sadly, donations under $5 cost more to process than they’re worth.) If you enter your middle name as “Lyved,” I’ll be able to tell Andrew that you heard about me on his site — and that’ll make Andrew feel good, too.
Thank you!
Best,
Kenny the Kidney
Article photo by Two Hawk’s Eye
9 Responses to “Do What You Can – and Keep Smiling”
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I hope that everyone who can afford it will please consider giving a small donation to fight the war against PKD as I did. Or at least, please spread the word about PKD and Kenny The Kidney.
Thank you!
-Andrew
Thanks so much for publishing Kenny the Kidney’s story. Sadly, it mirrors the lives of 12.5 million men, women, and children worldwide who suffer from PKD….I too battle PKD and fear that I might have inadvertently passed this life=threatening disease on to one or both of our daughters. I discovered accidentally that I had this 10 years ago after being hospitalized for a kidney infection that came out of nowhere. In a bizarre twist of fate, I also learned that I have zero family history of PKD and that my disease is the result of a random genetic mutation. This occurs in approximately 15% of all cases. I suppose the message very plainly is this….it was lurking inside of me, can it be lurking inside of you or one of your loved ones too? Please help us eradicate this disease by contributing whatever you can to the Walk For PKD today. Your thoughtfulness will be greatly appreciated.
Hi Karyn,
You’re welcome. Thanks for writing in. I haven’t heard much about PKD even though it affects so many people. So I’m glad to share information about it and how to fight it.
Please keep up the fight!
-Andrew
[...] site. And now it's up. Check it out, and if you like it, please leave a comment thanking Andrew: Do What You Can – and Keep Smiling Thank you, Andrew, for your time and the space on your blog! Best, Kenny Posted on August [...]
I thought I would write in as well and say thank you for letting “Kenny” post here. Two of my three sons have PKD as well but the recessive form, ARPKD. My husband and I carry the gene for the disease and unknowingly passed it on to our boys. It is much rarer than the form “Kenny” has but just as devastating. So again thank you for having “Kenny” be a guest here and helping to raise awareness of this disease.
Hi Michele,
You’re very welcome! I created Lyved to allow different voices to be heard and it was great to have “Kenny” write about PKD and the fight against it.
Thanks for stopping by and writing in!
-Andrew
I know! I’m late to the game, but thank you for helping get the word out about PKD. I have to children, ages 10 and 7, who have ARPKD. One has had a transplant and one will on September 29th.
Spreading the word is one thing we can do! So, thanks again!
Hi Julia – you’re very welcome! I’m glad to spread the word about PKD. I didn’t know about it so I know there’s many more out there like me.
-Andrew
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