Archive for the ‘organ donation’ Category

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!

Thursday, March 5th, 2009

My manager was in our nation’s capital this week, asking the staffs of four senators and four representatives for a little more funding for PKD research, and a little help making more organs available to those who need them. Along with a number of old and new PKD friends from around the country, Bill met Iowa Sen. Charles Grassley (R) in person, and met the staff of Sens. Gillibrand (D-NY), Schumer (D-NY) and Harkin (D-Iowa), as well as the staffs of Edolphus Towns (D-Brooklyn), Paul Tonko (D-Upstate NY), Carolyn Maloney (D-NYC) and his old friend Tom Perriello (D-Charlottesville, VA & surrounding).

Each day, more than 16 Americans die while waiting for a kidney. We’re hoping to do something about that.

Thursday, January 8th, 2009

A Long Island doctor whose wife had an affair is asking her to return the kidney he gave her — or at least the cash equivalent — in everyone’s favorite kidney story of the day.

People are haggling over whether doctors would actually perform such a reverse transplant, whether it’s ethical, whether the spurned husband is crazy to make this request, blah blah blah. But I’ve looked at maybe fifty different versions of this story, reported all over — and I’m still waiting to find *one* that considers this sad story from the point of view of the kidney.

Come on, people. It’s a custody dispute. Shouldn’t someone at least *ask* the kidney where it wants to live?

I’m amazed I have to point this stuff out ….

— Kenny

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, 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, 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, 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

Tuesday, January 29th, 2008

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