Archive for the ‘kidney’ Category

Thursday, October 16th, 2008

Profitable insurance companies aren’t stupid. They know that the best way to remain profitable is to deny coverage to people who might actually need it. For health insurance, that means people with preexisting conditions — that is, up to 13 percent of America.

Americans with chronic health conditions who lose their health insurance face bankruptcy. Bankrupt, they can’t even take care of themselves, let alone their children, or future generations of unborn children. They’ll die sooner than they need to, and they won’t be able to provide the next generation with the education or values they hold dear. I live in great fear that this will happen to me. And I know I have a lot of company.

This year’s winner of the Nobel Memorial Prize in Economics, Paul Krugman, pointed out in an October 6 column that deregulating the insurance industry would jeopardize health coverage for those with preexisting conditions.  As Krugman explained, under McCain’s plan, “the people losing insurance would be those who need it most: lower-income workers who wouldn’t be able to afford individual insurance even with the tax credit, and Americans with health problems whom insurance companies won’t cover.”

Right now that certainly means PKD, but it also means cancer cases that are in remission, old sports injuries, being 20 pounds over- or underweight, and even having acne — almost anything at all. In the near future, pre-existing conditions will knock out even more people, as genetic research uncovers predisposition for all manner of conditions whose chromosomal links are now unknown.

Deregulating insurance companies means exposing millions of hardworking Americans to bankruptcy and early death. It’s bad policy, and we should oppose it with every fiber of our kidneys.

Even if you oppose abortion, you should support Obama. Obama’s approach to health care will best ensure Americans’ ability to take care of their children. He’s the real pro-life candidate. — Kenny

Wednesday, September 3rd, 2008

Check out this offer from PKD Foundation board member Gary DeGrande, a renal human who’s always looking for new ways to raise money for PKD research:

“We’re offering two weeks in our cozy country cottage home near Paris and one week in a four-bedroom luxury home in the Dominican Republic to the highest bidder. These homes provide unique vacation opportunities and have been donated, so all of the winning bid goes directly to the PKD Foundation. Both homes are listed on the popular VacationRentalByOwner website, so check them out at : ID 131432 for the French home and ID 148384 for the Dominican Republic home.

“The opening bid for each home is $1000, with subsequent bids at $500 increments. The referenced websites contain lots of  info and photos; for further details and to place a bid, contact Gary at or call 651 653 3958.  Please feel free to spread the word to your traveling friends. Thanks for your help.”

I’d go myself, but the presence of a giant kidney might upset the neighbors. So you should go in my place, & tell me how it was! — Kenny

Monday, September 1st, 2008

My manager’s working to get the word out about the annual Walk for PKD. The Walk is a critical source of the funding that will one day cure me of these pesky cysts, and free up my 26 million brothers and sisters all over the world, restoring them to comfortable function. I’ll be Walking in Manhattan with a number of interested humans on Saturday morning, October 18th. Join us!

Please support us by clicking right here.

Thank you!!  — Kenny

Saturday, August 16th, 2008

For his 40th birthday this year, my manager’s fiancée gave him something he’d always wanted: The chance to parachute out of a plane. So the two of them drove up to The Ranch with their friends Halley and Pin-Bo a few weeks back, and leapt out of an airplane. He says it was scarier than he’d imagined it would be to sit in an ascending airplane, looking at an open door, with a plan to jump out of that door. And Bill had no chute of his own; he was attached in four places to his tandem instructor, John. Here’s what they looked like a second or so before they rolled out:

And here’s what they looked like a few seconds later:

And a few seconds after that:

He says he had a blast, and felt a wave of gratitude and yes, even affection for his tandem instructor once they landed. After all, he had depended on this stranger for his life, and the stranger had taken good care of him.

He says it was an amazing experience to fall out of the sky for some 60 seconds, longer than he’d ever fallen before in his life.

I’ll take his word for it. If God wanted kidneys to fly, She’d have given us wings. — Kenny

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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

Wednesday, June 4th, 2008

I spent a chunk of Saturday at the street fair of the first-ever World Science Festival, talking with kids and their parents about PKD.

I was happy to meet Miss Frizzle:

She was right near the Magic School Bus:

Also happy to meet Digit, of PBS’s Cyberchase:

And to spend a little quality time with my manager’s fiancée (please don’t tell him!):

We also saw two cool discussions — one on the origins of the universe (“Echoes from the Beginning”), and one on What It Means to Be Human. After the “Human” one (sounds like it’s easier being a kidney), I got to shake the hand of the renal Francis Collins, and thank him for his steadfast support of the Genetic Information Non-Discrimination Act, which passed recently with his help. Dr. Collins has been a great ally for PKD over the years. So has Alan Alda, who I tried but failed to greet.

Many thanks to organizers Brian Greene and Tracy Day, and producers Susan Magnano and Peter Downing, for inviting me to stop by. A great time was had by all kidneys and most humans. — Kenny

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

Saturday, April 5th, 2008

As it ran in the Albany Times-Union two weeks ago. Posting it here in case it ever becomes hard to find there. Thought you might like to see what one family has lost to PKD, and yet how they’ve been able to keep love and joy alive. My manager considers himself lucky to have known his uncle for as long as he did:

Brazell, Richard C. SCOTIA Richard C. (Dick) Brazell, 64, of Cambridge Manor Drive, Scotia, died of a short sudden illness, Thursday, March 13, 2008 in Orlando, Fla. Born June 30, 1943 in Schenectady, N.Y., son of Ann Brazell and the late William T. Brazell. He was a graduate of Siena College and was employed by the Amica Insurance Co., with a 30 year career in underwriting. He was a U.S. Army veteran during the Vietnam Era. Dick loved and was loved by many. To know him was to love him. He had a zest for life and fun. Worldly accomplishments weren’t his thing, but helping others was. He was the “solution” man and many considered him their mentor. Affectionately known as Poppy, he avidly followed the grandchildren’s sports activities near and far over the years-most recently JT’s, Drew’s and Carter’s hockey, Devin’s dance and Jackie’s and Kaitlyn’s soccer. In the past, it was Jimmy’s baseball, David’s bowling and Sarah’s basketball and softball, not to mention friends’ kid’s sports. Golfing with his friends and family was special and he once had a hole in one. And there was fishing with the grandchildren and friends. Dick always made time for everyone doing what he could to help in a situation and was blessed with the gift of wisdom which he generously shared. Despite his many health issues over the years, Dick carried on, never complaining. He cherished his recovery life and leaned on his loving family and friends in his times of trial and sorrow. He will be greatly missed. Mr. Brazell married his wife, Margaret, April 26, 1975. Besides his wife and mother, he is survived by a daughter, Tracy (Jay) Rafferty; stepchildren, James (Sharon) McCullough, Margaret (Peter) Marshall, Marybeth (Michael) McLear, Michael (Wendy) McCullough; grandchildren, Carter and Devin Brazell, JT and Drew Rafferty, Jimmy and Sarah McCullough, David McLear, Jackie and Kaitlyn McCullough. Also survived by several sisters-in-law and brothers-in-law; several nieces, nephews and cousins. He was predeceased by his brother, William T. Brazell Jr. and his son, Michael J. Brazell. Calling hours will be Monday, March 24, 4-8 p.m. at DeMarco-Stone Funeral Home, 1605 Helderberg Avenue, Rotterdam. Services will be at 9:15 Tuesday morning from the funeral home thence to Saint Joseph’s Church, Scotia for a Mass of Christian Burial at 10 a.m. Interment in Most Holy Redeemer Cemetery. In lieu of flowers, it is requested that memorial donations in his name be made to PKD Foundation, 9221 Ward Parkway Suite 400, Kansas City, MO 64114-3367.

Wednesday, March 12th, 2008

I feel like it’s Christmas and my birthday, all rolled up into one! It’s World Kidney Day tomorrow, and I’m going to try to get in front of a camera at the Today Show. Wish me luck!

— Kenny

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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