Archive for the ‘organ donation’ Category

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

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

Monday, January 21st, 2008

…. says the Oregonian, because that stranger agrees to donate a kidney to the coach’s mother, who has PKD.

It’s called a “paired living donor exchange,” and it’s the coolest thing since Eli Manning’s performance yesterday.

— 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! — 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

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

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

Tuesday, November 13th, 2007

Two of my cyst-carrying brothers got an assist from a cystless brother last Tuesday, and I couldn’t be happier. This great guy got the new kidney he needed, which makes him, his wife, their sons, and my two oversized kidney brothers all very, very happy.

I can’t think of a better first post. Live renally, everyone!

— Kenny