Archive for the ‘renal’ Category

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

Tuesday, January 22nd, 2008

The U.K. struggles with its lack of organ donors

… as a pair of renal Carnegie-Mellon computer scientists develop a terrific new algorithm to help donors who don’t match their desired recipients find people they do match — so they can keep paying forward the generous deed of donating their kidneys.

This matters so much to people with PKD because it’s not just they, themselves, who will need a new kidney. PKD runs in families, so, as the article from the U.K. shows (toward the bottom), they need to worry about where the next generation will get one. As the waiting list gets longer and longer, people really need systems like the one created at Carnegie-Mellon. — Kenny

Sunday, January 6th, 2008

Travis Donia is such a renal guy that he made sure the word “renal” was defined in the urban dictionary. That just rocks. He made sure “cystic” was there, too. ‘Cause you can’t have the good without the bad; can’t have the supreme without the dehydrated.

And Sharon Flood is renal for a whole other reason — well, *two* whole other reasons: ‘Cause she’s throwing a fancy kidney party just before giving her brother her kidney. What a supremely renal gal!

This kindly man feels uncomfortable because he needed both kidneys of a two-year-old in order to live. But that’s the way the organ shortage works. As Jeff Goldblum said in “Jurassic Park,” life, uh … finds a way.

Finally tonight: Matt Fulgieri’s story has run in Canada, India, and the legendary Russian newspaper Pravda. “Pravda” is Russian for “truth,” and “Izvestia,” which used to be the other major newspaper there, is Russian for “news.” In the former Soviet Union, Russians used to joke that there was no pravda in “Izvestia,” and no izvestia in “Pravda.” Now there’s a Fulgieri in “Pravda,” and that’s some good Izvestia …. — Kenny

Monday, December 24th, 2007

My manager, Bill Brazell, considers himself lucky to work for this guy, and was pleased to see him get this recognition in the S.F. Chronicle today. Brazell says Battelle deserves it; says he consistently sees further ahead than the rest of us, and treats his employees well as he takes them along for the ride. Ok, fine. I’ll give a renal human a little credit.

And I’m also happy for this story, all about a little boy with PKD who got to drop a ceremonial first puck and — even more fun — ride the Zamboni at a hockey match. — Kenny

Sunday, December 23rd, 2007

Matt Fulgieri is doing cystic kidneys and their owners a renal favor by getting the word out about his donation. Even if you’re not a kidney, it’s a great story: The guy who booked Matt’s wedding five years ago just gave him his kidney. What a marvelous gift Mr. Rick Bellando has given — not only to Matt, but, as Matt notes, Matt’s sons, wife, and everyone who knows them both. The ripple effect of a gift like this is dramatic: everyone who hears about it is moved. How could you not be? They knew each other just five years. They’re not related. Rick has three kids of his own. He could have decided the risk to them wasn’t worth it. But as he read a story to one of his daughters, he said, “I kept thinking about his little boys, and how unfair it was to them.”

So he gave Matt a kidney. The gift is so fantastic and amazing that this kidney has no other words for it. Fantastic. Amazing. Rinse. Repeat.

See how cool kidneys are? Unlike hearts, stomachs and almost everything else, we know how to share.

Nothing wrong with those other organs, of course. We all need each other.

I’m just saying.

Thank you, Rick, and all kidney donors everywhere. — Kenny

Monday, December 17th, 2007

… So said this lovely nurse in Scotland.

Ain’t it something how this nurse — who’s already given so much of her time to sick people — didn’t burn out, didn’t become hardened, but became even more compassionate? She had to fight off those friends of hers who wanted to stop her. And what a wonderful gift she’s given to a retired carpenter who grew up in the shadow of PKD, and had no one to turn to. (Quite often, people with PKD have a hard time finding a donor, because their relatives — the most obvious potential donors — are carrying the cysts, too.)

Happy holidays, Nurse Ryder, you renal gal, you!

— Kenny

Sunday, December 16th, 2007

Technorati, and feeling a bit like Steve Martin in “The Jerk.”

Things are going to start happening to me now …. renal things ….
— Kenny

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Sunday, December 16th, 2007

Some kidneys refuse to read the NY Times; they say it’s biased toward livers. Could be; I’ve noticed a lot of stories about alcohol. Anyway, those kidneys, and the humans who agree with them, will today miss a terrific story by Sally Satel, called “Desperately Seeking a Kidney.”

Dr. Satel, a psychiatrist who does some work for the American Enterprise Institute (which also employs Ayaan Hirsi Ali — much to my surprise, I suddenly find myself rooting for two players at the AEI), gave a marvelously honest and thorough description of her own feelings as she searched for an unrelated kidney donor — and of the complicated emotions felt by many recipients and donors. It’s a great read. Really gives us kidneys our due. Kenny gives it two nephrons up.

— Kenny

Saturday, December 1st, 2007

Ray Lindenberg and the good workers of SOS (Select Office Suites) have been extremely generous to PKD research over the past 15 months. When my manager, Bill Brazell, moved into 116 W. 23rd Street as an employee of Federated Media in September 2006, he waited a few days before asking Ray, the SOS manager, if SOS ever donated money to charity. “Let me see what I can do,” said Ray. He came back to Bill a few days later with an envelope holding $520 in cash.

A few months later, Ray suggested a White Elephant Sale for PKD. Bill wasn’t even sure what a White Elephant Sale was, but the next thing he knew, his colleagues at the other 95 small companies that rent space on his floor were bringing in old books, ash trays, boom boxes, watches, and in one case, a very valuable pair of crystal glasses. Once he got it, Bill brought a few things, too. Ray organized the sale, and Bertha and other SOS employees staffed it. In just a few days, the sale brought in $1,300 even as it increased awareness of PKD.

As the 2007 Walk for PKD approached, Bill was reluctant to ask Ray for more help. But he thought of his relatives, and asked Ray if SOS might please help with the Walk. Again Ray passed the hat, and this time came back with $810.

So in the past 15 months, Ray and SOS have raised more than $2,600 for PKD. And Ray would like to do more. What a great guy! His support means so much to Bill and to everyone who’s dealing with PKD, which Ray referred to last night as SOS’s “malady of choice.” Heh. Awesome. We’ll take it. Thank you, Ray, and thank you, everyone at SOS.

The photo above depicts me thanking them last night, at the annual SOS Holiday Party (photographed by the intrepid John Schneider). Ray is behind me and to the right as you look at the picture, near the microwave. Also in the photo are Brian Mattlin from Mattlin Mandell; a great guy named Kenny (great name, too), who used to work the night shift at SOS before moving to North Carolina, but came back for the party; and Lee Mandell, also of Mattlin Mandell.

Also at last night’s party I was able to thank Travis Donia and Liz Copic for their support on the web site and in general, and Halley Hopkins and Pin-Bo Tsai. Halley encouraged Rob Czar and Corinne Leigh to make my outfit, and Travis made this site. Thanks, guys! I would literally be nothing without you. — Kenny

Tuesday, November 27th, 2007

One of the most renal people of our time, or any time, is Ayaan Hirsi Ali. The guy who killed filmmaker Theo Van Gogh planted a note on Van Gogh’s body that said Hirsi Ali was next. And death threats continue to come in from all over — all to stop her from speaking her mind.

The Dutch government encouraged Ms. Hirsi Ali to run for parliament, promising her a security detail if she did so. Now they’ve announced they plan to stop paying for it. Amsterdam is a great town for a giant kidney — they tolerate everyone. But this stance dims my enthusiasm for the Netherlands.

Filling the void, the great writer Sam Harris has started a fund to pay for Ms. Hirsi Ali’s security. My manager, Bill, who had the honor of shaking Ms. Hirsi Ali’s hand after a debate at the New York Public Library, is contributing ten bucks a month, and wishes he could give more. If you care about the status of women in the Muslim world (i.e., the entire world), or just don’t think people should be told to shut up under threat of death, then please help Ms. Hirsi Ali stay alive.

The cysts that pop out of my cherry-colored skin are important, of course. But so is the life of Ayaan Hirsi Ali. — Kenny