Archive for the ‘generosity’ Category

Friday, April 11th, 2008

Surgeons at Johns Hopkins performed the nation’s first-ever 6-way kidney transplant. Six donors, six recipients. Amazing.

Gotta love those Hopkins docs. Favorite line: “Johns Hopkins has performed 52 paired kidney exchanges, said the network. Hopkins pioneered the first triple swap in 2003 and the first five-way swap in 2006.”

The article said that “a national system to bring mismatched pairs together ‘could add about 2,000 additional transplants a year, which would be a huge boost.’ ”

I’ll say it would! All I can think of is those six kidneys in new homes, with new neighbors. Having left their healthy sibling behind — in charge of the old homestead for the first time — the transplanted ones are off to take on new responsibility, and are now filtering blood for those who couldn’t do it on their own. It’s so gratifying to feel needed. If I had eyes, they’d be moist …

— Kenny

Wednesday, April 2nd, 2008

A fellow PKD volunteer, Amy Epstein, has done a wonderful thing. Starbucks is soliciting community-building ideas, so she suggested a penny for PKD research.

Why Starbucks? ‘Cause one of their renal baristas donated a kidney to a customer, a woman with PKD. Wow.

Please help us nurture this relationship with Starbucks. Here’s how:

1. Click on this link. It’ll take you to Amy’s proposed campaign in the “Building Community” section of
2. Where it says “Sign In”, please create an account.  Make up a User Name, Password, email address (you can make up a new one for each account) and screen name.
3. The next page offers you the option to “Vote” so please click on the “Vote”.
4. The page after that offers you a search box in which you should type in “PKD”.
5. The page after that shows the name of the campaign: How about “A Penny to Fight PKD” Campaign.  Click on it.
6. Finally, on this page, click on the check mark “VOTE”.  It will add 10 points to our voting score.   Scroll down and add your comments.

Join us! And please lemme know if you add your vote. I’d love to thank you publicly — or privately, if you prefer.

— Kenny

Monday, March 31st, 2008

A big shout-out to the wonderful Michele Miller, whose blog WonderBranding teaches businesspeople everywhere how to market to women. And I’d call her wonderful even if she didn’t say such nice things about me.

— Kenny

Friday, March 28th, 2008

Had to pass on this link, showing my friend, the renal Karyn Waxman, putting herself out there to tell Greater Memphis — and now you — all about PKD.

Go, Karyn!

Monday, February 18th, 2008

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

Monday, February 11th, 2008

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

Friday, February 8th, 2008

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

Thursday, January 31st, 2008

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

Thursday, January 24th, 2008

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

Wednesday, January 23rd, 2008

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