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Important NY Times story about widespread fear of genetic discrimination. Many people who have PKD worry about this. They avoid talking about it, avoid testing their kids for it, and avoid the studies that could someday save them — and could someday save the U.S. more than $2 billion a year.

So much great research is being done on so many diseases — but if people are afraid to join the studies, a lot of that research will be wasted.

Some 80 people who care about PKD are going to Washington, D.C., next week to ask their congresspersons to pass GINA, the Genetic Information Non-Discrimination Act. My manager will be among them. Please add your voice to ours.
— Kenny

Posted on February 25th, 2008 | Filed under genetic information | No Comments »

Check out this thoughtful young woman. Having discovered that she was born with four kidneys, she’s decided to donate two of the extras.
And it doesn’t hurt the story that she’s easy on the eyes.
— Kenny

Posted on February 18th, 2008 | Filed under generosity, kidney, organ donation | No Comments »

Leigh Reynolds had never heard of PKD until she took a job with the PKD Foundation a couple of years ago. As the National Walk Manager, though, she brings tremendous enthusiasm and all-around great spirit to the fight against PKD. My manager, Bill Brazell, has been lucky enough to see Leigh many times — at last year’s PKD Convention in Florida, at board meetings and at the 2007 PKD Walk in Albany, NY. Leigh has given a great deal of herself to this cause — and always with a big, warm smile. You always feel that she’s having fun.

A few short weeks ago, she gave something more: She donated one of her kidneys to one of the volunteers she was helping to manage. She’d met Dean Benigno, a realtor in Phoenix, when he became the volunteer coordinator there. Now he badly needed a kidney, because PKD had ravaged the ones he was born with. Leigh felt called to give him one of hers, if there was a match. Lo and behold, there was — and on January 17th, she gave her kidney to Dean.

From all 13.5 million of us who deal with PKD, Leigh — Thank you! You are a shining light in a troubled world. Thank you, thank you, thank you.

Wow. Kinda makes you wanna go out and do something nice for someone, doesn’t it? My manager says Leigh’s gift has already inspired new donations to the PKD Foundation. Feel free to join in — a few dollars is a lot easier than giving a kidney!

— Kenny

Posted on February 11th, 2008 | Filed under generosity, kidney, organ donation, PKD, renal | No Comments »

Maybe it’s because I get so thirsty, but the sight of dolphins playing in the ocean fills me with an almost nostalgic happiness. I want to be right down there with them, swimming for the fun of it, surfacing every so often for air and going right back under, darting in and out of the path of the big, lumbering boat.

My manager and I were in San Diego two Saturdays ago, along with my manager’s lovely fiancée. We went on a whale watch, and this is part of what we saw:

Why ‘almost nostalgic’? I don’t know. It’s as if, somewhere deep in my nephrons, my overgrown-kidney body knows what my conscious mind has long forgotten — that once, long ago, I too was a creature of the sea. I too was wrapped in the constant embrace of water that never let me go. I too communicated with glances and approaches and withdrawals and the occasional sonic blast rather than words. I too could live without thinking about cysts, or gravity, or hydration. I too could move like they can. And maybe I someday will again.

Posted on February 8th, 2008 | Filed under cysts, dolphins, kidney | No Comments »

In the movie “Blade Runner,” Roy Batty said it’s not an easy thing to meet your maker. He wouldn’t have said that if his maker had been Threadhead Corinne Leigh. She’s one of my makers, and she’s terrific. As I type this she’s doing cosmetic surgery on my cysts, and it doesn’t hurt a bit.

The equally renal Travis Donia (a college grad, and even cooler and cleverer now than he was at 15) is putting the finishing touches on this website. Soon we’ll invite friends to come check it out, and pass the word.

Wish us luck, cross your fingers, toss a kidney a prayer. We welcome blessings of all kinds as we wait with joyful hope. — Kenny

Posted on February 8th, 2008 | Filed under generosity, renal | No Comments »

Adam Quirk, the Great American Something, fearless filmer and renal editor of giant kidneys, told me recently that he and his friends had played Shotgun Golf over Thanksgiving. I hadn’t quite been able to picture it. Now I can. Wish I’d been there. I’m not much for the actual game of golf — my shape makes it hard to swing the clubs — but I like to blast golf balls with a shotgun the same as the next male kidney.

In other news, even giant kidneys have heard the 1967 Monkees single “Daydream Believer.” But there were things about it that made no sense to us. The beginning is weird: “Oh, I could hide ‘neath the wings of the bluebird as she sings / The six o’clock alarm would never ring.” Sounds nice, but what does it mean? How would hiding under a bird’s wings prevent an alarm clock from ringing?

A later lyric is weirder still: “You once thought of me as a white knight on his steed / Now you know how happy I can be.” With that ‘white knight’ stuff, the singer is setting us up for his beloved’s disappointment. Then he tells her that she now knows how happy he can be. Huh? Why should she care?

Well, thanks to, this particular giant kidney has gotten to the bottom of the mystery. I noticed in the obit for the late John Stewart that in addition to joining the Kingston Trio and singing “Gold” with Stevie Nicks in 1979, Stewart wrote “Daydream Believer.” Turns out he recorded his own acoustic version of the song four years after he sold it to the Monkees, and Rhapsody carries it. (You can hear it for free — about 14 songs down on Stewart’s list.)

Hearing his 1971 version is a revelation. The song begins not with an “Oh,” but with an “If”: “If I could hide ‘neath the wings of the bluebird as she sings / the six o’clock alarm would never ring.” He’s saying he would do something to stop that infernal alarm clock from annoying people. I’m not clear *how* he would kill the alarm from beneath those wings — but at least we’re dealing with an if-then statement, rather than an obvious non-sequitur. Maybe he means that if he lived under a bird’s wings, no alarm could reach him. Who knows.

And a second item that had barely registered as odd becomes clearer. Davy Jones of the Monkees sang, “My shavin’ razor’s cold, and it stings.” Stewart, though, sang, “My shavin’ razor’s old, and it stings.” Of course. Cold razors don’t sting. Old ones do. Who added the ‘c’ to a perfectly good ‘old’?

The third issue is, if possible, even more important. Here’s the white-knight lyric in Stewart’s version: “You once thought of me as a white knight on his steed / Now you know how funky I can be …” You can hear him smiling as he sings it. He knows he’s not everything she wanted him to be, but what can he do? Most men are doomed to disappoint our lovers, and while that disappointment can be sad, it can also be a little funny. We’re only human.

The Monkees didn’t like the “funky.” Or someone who controlled them didn’t. (A commenter named Garrett on this page says the TV show’s producers were unfamiliar with the word “funky,” thought it might be dirty, and changed it.) Somebody made the song safer, or thought they did — but in the process he or she (probably ‘he’) robbed it of its meaning, as well as an important part of Stewart’s gentle humor. (Sadly, Rhapsody doesn’t carry the Anne Murray cover, which was the first version I heard. I can’t check how she handled it.) Later in Stewart’s version, the singer continues to play with his phrasing — ‘Daydream deceiver and an old closet queen’ — and you can hear him laughing.

There’s no ‘closet queen’ in the Monkees’ version. No deceiver. And no funkiness, either. It’s still a fun song, obviously — it hit number one, and it took the Beatles’ “Hello, Goodbye” to displace it. But it had lost something I was glad to get back, and am glad to share with you. — Kenny

Posted on January 31st, 2008 | Filed under generosity, kidney, renal | No Comments »

This is a horrific story. Doctors, police, elderly men taking advantage of young laborers, threatening them, anesthetizing them, stealing a kidney, then giving no post-operative care. Donating a kidney is hard enough with good care — without it, it’s gotta be horrendous.

Well, just try to get me, you cystic Dr. “Amit Kumar,” or whatever your current name is. Sure, it’s easy for you to pick on kidneys the size of a fist. But I’d like to see how brave you are when the kidney is taller than you!

I hate bullies ….

— Kenny

Posted on January 29th, 2008 | Filed under cystic, kidney, organ donation | No Comments »

My manager took a course at Gotham Writers Workshop with this writer a few years back, and says he’s thrilled to see Charles getting this kind of recognition. A glowing profile in the Sunday NY Times Magazine, written by Chip McGrath, who used to edit the NYT Book Review? What else could you ask for? Bill says no one’s worked harder at his writing than Charles Bock, through a lot of years when he had to wonder why he kept going. Bill hopes everyone runs out to buy Bock’s new novel, “Beautiful Children” . It hits stores tomorrow.

Bill and his fiancée spent Thursday through Sunday with the rest of the PKD Foundation board of trustees in San Diego. He says it can be tiring to sit in hotel conference rooms for hours on end, but he always comes away energized by his contact with a diverse group of smart, interesting, renally committed people who are doing everything they can to cure PKD. Thanks, board! And congrats, Charles!

— Kenny

Posted on January 28th, 2008 | Filed under kidney, PKD, renal | No Comments »

Let’s hope this new technique holds up — it promises to end a lot of kidney-recipient suffering. Great story of a renal doctor persevering. — Kenny

Posted on January 24th, 2008 | Filed under generosity, kidney, organ donation, PKD, renal | No Comments »

There are two major forms of PKD: Autosomal Dominant, or ADPKD, and Autosomal Recessive, or ARPKD. The Dominant kind is much more common, affecting 1 in every 500 people — that’s the kind I have, and the kind that runs in my manager’s family. My manager, Bill Brazell, knew for most of his life that he might have it, and when he was a freshman in college he asked a doctor to check him for it. When someone with ADPKD has children, each child has a 50-50 chance of inheriting PKD.

The Recessive form is serious much earlier — killing some of its heirs before they reach the age of one month — and much more rare, affecting just 1 child in 20,000. Because two recessive genes must come together to cause this disease, ARPKD parents usually have never heard of PKD, and have no idea that they carry its gene. If you can remember Punnett squares from high school biology, you’ll know that first, each parent needs to carry the recessive gene (quite rare in itself), and second, that each of those parents’ children will have just a one-in-four chance of combining those two recessive genes.

Julia and Julian Roberts, who live in Atlanta, have a son and a daughter named Gage and Quinn — and both of these cute kids have ARPKD. There’s also an eye disorder in the mix. A terrific lady, Julia chronicles her daily trials in a renal blog, telling readers what it’s like to look for — and find — adults willing to donate a kidney to save your kids’ lives. Check it out. — Kenny

Posted on January 23rd, 2008 | Filed under cysts, generosity, kidney, organ donation, PKD, renal | No Comments »

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