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Kaylee's Fight Takes Next Step Save Email Print
Reporter: Melissa Brunner
Email Address: melissa.brunner@wibw.com

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Good news about a Topeka teen who underwent a kidney transplant Wednesday. Kaylee Clausen's mother Debbie says there already are signs her new kidney is functioning.

The Seaman High School graduate was born with a condition attacking her kidneys called Alport's Syndrome. She held on to attend graduation and finish the softball season. But the sun coming up Wednesday signaled the dawn of a new life for the 18-year old.

Kaylee's dad, Don, summed up the feelings.

"Just kinda nervous," he said.

Kaylee woke up at Children's Mercy Hospital in Kansas City a bit apprehensive, but broke into a smile and a wave when she spotted the woman in the hospital bed across the hall. It was family friend Lori Jensen, who would be giving one of her kidneys to Kaylee.

"I'm excited," Lori said before heading to surgery. "I can't wait to wake up and ask Kaylee how she's feeling. It's just one of those things that's the right thing to do. I haven't been nervous at all."

For young Kaylee, though, it wa a different story. The hours before surgery brought a roller coaster of tears followed by nervous laughs. Kaylee said she was nervous and excited at the same time. What's she looking forward to most? Getting back to normal, she said.

Just before 7:30 am, it's time for Lori to head to the operating room. She smiles as she's wheeled out of her room.

"It'll be OK," she says as she gets a hug and a "thank you" from Debbie, then Don. "Where's Kaylee?" she asked as they started to wheel away. Debbie pulled back the curtain so they could exchange parting waves.

"Lori's a great person," Don said. "She said she'd do anything to make Kaylee better."

More than an hour later, it's Kaylee's turn. A crowd of about a dozen people followed her for the elevator ride down to the operating room.

"It's emotional," Don said. "Anything could go wrong. It's one of those things that you don't really want to be here, but it is what it is. This is the best thing for her is to get a kidney to give her her life back."

Saying goodbye at the operating room door isn't easy.

"Terrible," Debbie described it. "I know she's okay, but it's hard. She'll be healthy, though."

"We're getting her the transplant before she becomes very ill due to kidney failure," said Dr. Bradley Warady, a nephrologist at Children's Mercy.

Dr. Warady is helping lead a nationwide study on why the kidneys go bad in children with Kaylee's and other conditions. He says the goal is to understand what causes kidney failure to progress in the hopes of devising new treatments so kids like Kaylee don't need transplants or dialysis. Right now, he says, kidney transplants in children are relatively rare - Children's Mercy only does about 15 a year. However, he says, kidney problems in adults are rising and there's a fear that the damage could begin in childhood. He says the rising obesity problem gives rise to more diabetes, and one complication of diabetes is kidney problems.

Back in the waiting room, just before 10:30 am, Lori's husband Ryan delivers the first big piece of news.

"Kaylee's kidney is out and ready for Kaylee," he says.

"You mean Lori's kidney?" Don asks.

"It's Kaylee's kidney now," Ryan responds.

Lori was a big piece of the puzzle for Kaylee. Without a living donor, Kaylee would go on a waiting list, possibly needing dialysis until a kidney could be found. Dr. Warady says skipping dialysis and going straight to transplant is preferred to prevent complications dialysis can bring.

"The living donors help bridge the gap for people waiting, especially for kidneys," says Ginny Woods, RN, organ procurement coordinator for Stormont-Vail HealthCare.

Right now, there is no national databank for people wanting to donate a kidney to someone they don't know, but Woods said with more people becoming informed about living donations, the Midwest Transplant Network recently starting its own registry of willing living donors.

With 92,000 people waiting for transplants, she says, organ donors are heros. "They change people's lives."

As they pass the time listening to music, reading, sewing and talking, Kaylee's family and friends can't wait for that to be true. Those who aren't here in person send their thoughts through a prayer pager, which goes off regularly throughout the day.

An hour after Lori's kidney is out, another update - surgeons are sewing the organ into Kaylee. By 1:30 pm, Kaylee is out of surgery and in recovery. When Dr. Warady comes to brief Debbie and Don, her immediate question is, "When can I see her?"

Relief sets in, but the worries won't end until they get to see Kaylee's face. That wait, it would turn out, was just beginning.

"I want to see her, to talk to her, to know she's okay," Don said.

The minutes become hours. The pager goes off while the prayers continue. Toes start to tap, someone absently tosses a stress ball from hand to hand. Finally, just after 5 pm, more than nine hours after it all started, the reunion they've been waiting for. A bed rolls out from behind a closed door and a nurse proclaims, "She's been asking for you all!"

The crowd that followed her to the OR, once again surrounds her as she's wheeled into the PICU, the first steps on the road to a new life.

"She doesn't know what it's like to feel good, and she'll feel good," Don said.

Kaylee will be stay at Children's Mercy at least the next week. Lori will be out in three to five days.

Both Children's Mercy and Stormont-Vail recently earned national medals of honor for their efforts in gaining consent of organ donors.

If you'd like more information on being an organ donor in life or death, contact the Midwest Transplant Network at www.mwob.org.

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Posted by: Frank Location: Topeka on Jul 13, 2008 at 05:07 AM
that's great news for Kaylee and I know kidney transplants have come a long ways since the 80's(when my mom had her's)but this will be a lifetime battle for Kaylee.no 2 kidneys are the same and so everyday there will be anti-rejection medicine to take and there's no guarntee the kidney will last a lifetime.my mother's lasted almost 20 years before it gave out.strict diet and monitoring will prolong the kidney but it will eventually fail as this young woman grows into a older woman in her 40's probabley.I pray newer medicine and tests will prolong her life much longer then it did my mother's.mayo clinic in Rochester Minn. is the best around,don't hesitate to go there if needed later in life if the kidney becomes a issue. good luck and god's speed young lady. :)

Posted by: ROBYNN Location: KANSAS CITY, MO on Jun 27, 2007 at 02:35 PM
What an inspirational story! My father and sister suffer from the same disease. My father has already had a transplant from a live donor. We pray that my sister is as lucky!

Posted by: Kathy Location: Dunlap, Illinois on Jun 9, 2007 at 07:04 AM
Great article. My daughter age 23 suffers from the same disease. I will be donating a kidney to her in August.

Melissa's Links
Capper Foundation Easter Seals
Find information on this Topeka organization helping children with disabilities. Plus, they have their own eBay auction as a fundraiser - I'm a bit of an eBay addict!
http://capper.easterseals.com
American Cancer Society
An excellent source of information for people who have cancer or who have loved ones with cancer. I go here often when researching health stories related to cancer.
http://www.cancer.org
Kansas Legislature
Includes legislative agendas, a way to track bills, contact information for all the legislators and more. A resource I use often.
http://www.kslegislature.org