Archive for the ‘cysts’ Category

Sunday, November 14th, 2010

There’s been a flurry of very kind coverage lately of my quest to help cure PKD. Here are a few highlights:

** Kim Carollo wrote a great story that ran on the homepage of ABCnews.com.

** For the second year in a row, Andrew Galasetti invited me to write a guest post about PKD for Lyved.

** Merlyn Seeley and Diane Ursu of Examiner.com each wrote very nice stories about PKD and me; I’ve linked their stories to their names.

** And in much more important news, another molecular compound was found to have great potential for treating PKD. Pioglitazone is already approved for the treatment of diabetes, which means the path to testing it in humans should be shorter than if it were a brand-new compound.

So we’ve had a great couple of months. On October 9th I brought my manager’s wife and daughter, Victoria and Genevieve, to the Connecticut Walk for PKD, where we met a number of wonderful people, including the dynamic coordinator Jaime Lazarus and a rugby player who told us that when he needed a kidney transplant, he told his team, and received more than 20 serious offers within a week. He ended up matching with a teammate, who went ahead with the donation. I also met Kristen Neary, the leader of Helen’s Team. Kristen lost her infant daughter, Helen Grace, to ARPKD in 2002, and Helen’s Team walks every year to fight the disease that took her away. This year alone, Helen’s Team raised more than $9,500 to fight PKD. Some people just plain rock.

On October 23rd my manager was in Chicago for a PKD Foundation board meeting, but he flew back that night so we could all be ready for the TriState Walk for PKD. It was a gorgeous day. I met a young woman named Abby who played pro basketball in Australia and Sweden and now lives in southern New Jersey. She saw the article about me in ABC News, passed it around her family, and traveled up for the Walk, determined to do more to fight the disease that has debilitated her relatives the way it has mine. I also saw a bunch of old friends there — Louis Collier and his wife Maria, Richard Roth, Matthew Fulgieri, Robin Strachan, Rich Mauch, Florence O’Berg, and many, many more.

I was particularly honored to meet Kristin Krittman, whose daughter Brooke, born with ARPKD, died just three hours after being born. Kristin and her husband decided to help make sure future parents won’t have to go through the pain they endured, and their team, Brooke’s Bunch, has raised more than $16,000 so far.

If you ever start to forget why we do these Walks — why it matters to do all we can to cure this disease — just look at this picture of Brooke, and imagine what her life might have been like if we had known what to do to keep her alive. Count all the specialists Julia Roberts has gone to see to help her two kids with ARPKD, Gage and Quinnlin.

For all the Kristen Nearys and Julia Robertses and Kristin Krittmans out there who raise money for this Walk to help future parents, thank you. And to all of my donors over the years, thank you.

Because of you, our future is brighter. And because you know us, our future is part of your own future. So when you help us, you also help yourself. We’re cool with that.

You can still support me through December 31st! Please do!

— Kenny

Wednesday, September 8th, 2010

All around the country, we’re gearing up for the 2010 Walk for PKD. I’ll be at the one in Connecticut on October 9th, and then the one in New York City on October 24th. And my manager’s old friend Alexis Ohanian, cofounder of Reddit and of the delightful uncorporation known as Breadpig, is inviting people to help us out. Thank you, Alexis!

Please help Alexis help us raise the money we need to cure PKD. Check out my fundraising page — see me in costume, holding my manager’s baby girl — and donate today!

Friday, October 2nd, 2009

Last Saturday I was thrilled to attend the Hudson Valley Walk for PKD in Bedford Hills. What a wonderful place. The Walk was so well organized — thank you, Sam Friedlander, Heidi Cambareri, and many, many others — that everyone could relax and just have fun. Plenty of food came from Shop-Rite and Whole Foods. And as always at a PKD event, there was plenty of bottled water.

Of course we weren’t there just to have fun – but to help cure PKD. And Hudson Valley certainly did its part, bringing in more than $60,000 by the day of the Walk – and still counting!

At center is Luke Sclater-Booth, a young boy dealing with ARPKD, the brutal recessive form of PKD. At right is Stuart, Luke’s dad. Stuart donated a kidney to Luke a couple of years ago. Luke’s team, led by his mom Kirsten, helped raise more than $9,000 for research.

This Imperial Stormtrooper donated a kidney to a friend back in April. Did I feel jealous when some of the kids were more eager to talk to him than to me? You bet. Would I have made the same choice, if I was 10? You bet I would. Who doesn’t love a stormtrooper?

This motorcycle club came together to support one of their own: The woman in the white T-shirt. And in so doing, they made PKD, for just a few moments, seem cool.

Even idyllic Bedford Hills, NY, is not exempt from profiling.

Heidi Cambareri, at left, put on the Hudson Valley Walk for five years before passing the torch this year. Heidi and my manager’s wife, Victoria Brazell (center, great with child), are just two of the many wonderful people who came out to Walk for PKD. Thanks, everyone!! We’ll see some of you in Manhattan on October 25th!  – Kenny

Wednesday, June 24th, 2009

I spent most of Sunday, June 14th walking around the World Science Festival Street Fair in Manhattan’s Washington Square Park, amid the only sun most of us have seen all month.

What a renal blast. Here are a couple of highlights:

Me and Digit, a character from the PBS show Cyberchase.

Standing with two kids who kept pushing into my fabric, saying, "Squishie!", giggling, and running away.

Standing with three happy fans

Standing with three more happy fans

Hello from the Washington Square Park Arch

Thumbs up with Sid the Science Kid (also from PBS's Cyberchase)

With a friendly World Science Festival staffer

In front of the World Science Festival logo. Thanks, WSF - and particularly Peter Downing and Susan Magnano - for inviting me back this year! You do wonderful work, and I had a great time!

Friday, August 1st, 2008

My manager’s Google alert, which sends him each week a list of stories around the world that contain the phrase “polycystic kidney disease,” told him a few months ago about a novel whose main character has PKD. Guardedly curious, he found a used copy on Amazon for cheap. Before long we were both enjoying the book on many levels — I reading it when he was busy, and vice versa.

One of the functions of art is to convey the feeling that someone else has felt what we have felt — that we’re not alone in our fear, our anger, our lust, our sadness, or whatever feelings make us feel out of step with the expressions we see on the faces of the people around us. And one of the things that’s difficult about PKD is that so few people have ever heard of it. It can be lonely, having cysts. (And lonelier still being a giant kidney with cysts. It’s rare for me even to run into a giant kidney without cysts.)

What a pleasure, then, to read a clever, thoughtful, poignant novel whose narrator is dealing with the same cysts that trouble me. His mother died young of PKD, as many of my manager’s relatives have done. The narrator’s trips to dialysis; the annoying and sometimes desperate attention he has to pay to his diet; his constant awareness of the shortage of kidneys for those who need them; his upset feelings that so few of his friends are willing to donate their organs even after their deaths; the dark impulses he feels as he watches a motorcyclist and imagines him falling, dying, giving up at last the kidney the narrator so desperately needs: for a person with PKD, to read “The Waters of Thirst” is to feel understood.
And understood in a way that is actually fun. For the novel contains a multitude of pleasures. The narrative voice is consistently funny, often causing this reader to smile and sometimes laugh out loud at tidbits that had nothing to do with PKD. The narrator, a young gay Londoner during the late 1980s or early 1990s, meshes intimations of PKD-borne mortality with those same intimations delivered then by AIDS — and eventually, surprisingly, folds them together. Both diseases waste people’s energy and can take people when they’re quite young — too young, in the popular imagination, to die. Of course there’s no such thing as too young to die, but young deaths hurt us more, scare us more and cause more grief than the deaths of those old enough to have had many turns at the plate. Years ago my manager visited a man once a week for nine months as that man died of AIDS, and will never forget the way the virus destroyed him. Nor will he forget watching people he loved his whole life die of PKD.

The brilliance of Mars-Jones is his refusal either to avoid the facts of early death or to hammer them too hard. Throughout the very funny descriptions of gay porn, the eggshell-thin etiquette of dinner parties, and the dissolution of the narrator’s relationship with the loyal and likeable Terry, humor is never more than a phrase away. Here’s Mars-Jones on those motorcyclists (being British, he splits the word “motorcyclists” in two. As Mark Twain nearly said, foreigners always pronounce better than they spell):

“I mean, every vehicle is a potential accident, I realise that, but motor cyclists really are organ donors-in-waiting. A dab of grease or a handful of gravel, and a motor bike just wants a good lie down. … As time went by, I found my eyes were drawn to the rear contours of bikers’ leather jackets. The handbook recommended wearing a jacket with an extra panel of padding at waist level. It was for kidney protection. My immediate reaction was, oh yes, protect those kidneys. We don’t want anything to happen to them.”

Regardless of his motives, I wholeheartedly approve of the narrator’s urge to protect the kidneys of total strangers. I do wish more people felt as he does.

American humans are not nearly as familiar with the name Adam Mars-Jones as they should be. “The Waters of Thirst” is a marvelous book. My biases are obvious, but whether your kidneys make too many cysts or just the right number, if you’re not afraid to read descriptions of gay porn — a recurring and consistently hilarious theme — then by all means read this book. (If you can find a copy, that is: Amazon and B&N offer only used copies. That’s a real shame. This book should certainly still be in print. It’s a masterpiece.) — Kenny

Friday, February 8th, 2008

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.

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

Saturday, January 19th, 2008

… with a book. OK! Magazine reports that “Entertainment Tonight” fashion maven Steven “Cojo” Cojocaru, who appeared on “Oprah” to talk about his shock at learning that his kidneys look like me, has written a book called “Glamour, Interrupted” to describe his cystic troubles.

Cojo tells his “Entertainment Tonight” interviewer, “I want to bring awareness to kidney disease.”

Sounds great, Cojo. We’d love to have your help. Maybe I can meet up with you on your next trip to New York. I’ll help you sell some books, man! It’ll give the press one more reason to cover the event! Drop me a line! kenny@kennythekidney.com — Let’s work together, Cojo!

— 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

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