Saturday, October 20, 2012

From the perspective of someone who has been there...

This article has me in emotion overload. I do not know whether to feel hopeful that its possible for an individual to receive so many life saving kidneys, or saddened by the way his life made him feel. I will let you read and see for yourself.


Living on the kindness — and four kidneys — of donors
















Irfan Khan / Los Angeles Times

David Trujillo shows a self-portrait. Trujillo, 29, was diagnosed after birth with renal dysplasia — his kidneys were too small. “David’s unlucky,” his surgeon said. “But he’s also lucky,” referring to his four transplants.

David Trujillo's torso is a web of scars. Shunts in his arms, hoses in his stomach, garish gashes left from biopsies and scalpel incisions. In the summer when he goes shirtless, people often stare. Sometimes, to lighten the mood, he'll say he was bitten by a shark.

In reality, his body tells the tale of multiple bouts of kidney failure. David recently received yet another transplant. No. 4. He is 29 years old.

According to the United Network for Organ Sharing, only about 150 people since 1988 have received four kidney donations. That's out of more than 326,000 total kidney transplants.
In the year leading up to his latest surgery, David would visit a San Dimas dialysis center to have toxins removed from his blood. Four hours a day. Three times a week. The treatments left him weak and drained. He lost 40 pounds.

His operation Sept. 26 took eight hours — twice as long as normal because of extensive scar tissue left from previous surgeries. A full recovery is not expected for three more months. For the time being, David is fatigued, his body is sore, and it's difficult to walk.

Still, he knows he is fortunate. His fourth kidney came by way of a brother. His father, an uncle and an aunt have each donated kidneys in the past.

"David's unlucky," his surgeon said. "But he's also lucky."

At just one month old, David was diagnosed with renal dysplasia. His kidneys were too small to function and the doctor told Danny and Maria Trujillo to call their pastor.

But a different physician suggested the two look into UCLA's division of pediatric nephrology, which had started a program for infants. Soon David was undergoing dialysis every night via a machine next to his crib at home.

As a toddler, he hated being pricked with needles and put up a fight whenever it came to doctor's visits, pushing and screaming as his parents dragged him to the car.

"He would cry, I would cry, my husband would cry," Maria, 52, recalled. "David would ask, 'Why, why why?' "

Then David started saying in a small voice that he'd rather not live anymore.

"That still hurts," said Danny, 54. "I told the doctor, 'My son's telling me he wants to die. We need to do something different.' "

Nearly 4 by then, David was old enough for a transplant, but the wait time was up to 10 years in California. And he was O blood type, which meant finding a match could be even more difficult.
His father offered his own.

Doctors had to crack Danny's ribs to remove the organ, but the surgery went well. When the kidney began to shut down after 10 years, Danny talked futilely of donating his other one.

David's uncle, Art Trujillo, was 26 at the time. He usually saw David only on holidays, but he didn't hesitate to take a blood and tissue compatibility test.

"It seemed like a small thing — just, 'Here you go, get it done, give him a chance,' " said Art, now a 44-year-old phone technician living in Apple Valley.

Art's donated kidney lasted for eight years.

In 2003, it was Yolanda Trujillo who asked to donate. An aunt by marriage, something told her she held David's third kidney. My heart says it's me, she insisted.

The La Puente resident was on vacation in Mexico when she got the call. She was a match. Excited, she spread the news.

"Everybody looked at me like, 'Are you crazy? A kidney's a big part of your body,' " recalled Yolanda, now 57. "I'm like, 'We just need one.' "

By the time David needed a fourth transplant, most of his family members and friends had taken the required tests.

His 25-year-old brother Dustin, too young in the past, would donate this time.

But a month before the surgery, doctors deemed the brothers incompatible. David's body had developed antibodies to Dustin that drugs wouldn't knock down. The downside of transplants is that for every one received, the body makes it more difficult to find a match for the next.

Instead, Dustin took part in UCLA's kidney exchange program, donating to a stranger. In turn, one was given to David. Both surgeries were performed the same day.

The younger brother, who works at a motorcycle repair shop, shrugs when people ask him about such sacrifice. "For us, family is always first."

Anyway, the Trujillos said, kidney donation is not as scary as one might think. So far, those who have donated have experienced easy recoveries and feel just as healthy as before.

It is David who appears the most burdened by the gifts. This fourth one comes at a time when he finds himself changed — pensive and reflective.

"What do you give somebody," he asked, "who has given you a piece of him?"

Half of David's life has been spent in hospitals. Transplants gave him reprieve, stretches of time when he'd feel healthy and whole. But the slightest cold could mean an overnight stay because of possible kidney rejection. Then there were the experimental medicines, constant headaches, muscle pains, fits of vomiting.

His earliest memories are of drawing pictures of the nurses while sitting in bed, of his father rising from the cot beside him to pull on jeans and boots before heading out to work construction. His stay-at-home mother was chauffeur, fighting traffic on the 40-mile drive from their three-bedroom home in Covina to the UCLA hospital in Westwood. His three siblings were often watched by their grandmother. He only grew to 5 feet 4 inches. His brothers towered above him.

Kids made fun of his puffy cheeks and premature facial hair — the result of medication — and small stature. The taunts and names stung. He left seventh grade to be home-schooled for a year.

At 18, David tried to enlist in the Marines but didn't get past the medical exam. An attempt to take business courses at Citrus College in Glendora was short-lived as doctor's appointments caused him to miss too many days. His health also kept him from a steady job.

The perpetual illness began to make him bitter. Other people his age seemed so carefree.
He lashed out, began hanging with a crew concerned only with parties and raves and clubs. He dabbled in drugs, drank with his new friends, blew off doctor's appointments, missed taking medications. If he came home at all, he'd soon head back out again. None of it made him feel better about himself. And he was still sick.

Then one night he found himself at his parents' church. A Christian metal band performed. The members all looked like him — young with piercings and skin inked with tattoos.

"They looked like bad kids but were preaching the gospel. I was just looking at them like, man, I want to be like that," David said. "These guys found the peace and love that I wanted."

He called his mother, his words masked in tears, barely intelligible, and said he regretted shutting them out and he was done with his old life.

"After that, I never looked back."

He stays around the house now, mows the lawn, sketches in his room, tries to keep busy.
It's been a few years since that dark period, and David is thankful his family never reproached him, never made him feel unworthy of their donations.

He wishes he didn't require so much from them.

It helps that his girlfriend began driving him to dialysis and reminds him about his daily medications. Brittany Vis, 22, takes his condition in stride: "They say in sickness and in health," she said.

When being sick is a way of life, time becomes a peculiar thing. It can be slow and cruel, like a sentence that seems infinite.

But it can also race at a terrifying speed where a young man feels old, feels the pressure to take chances. It's why David once dived off a 90-foot cliff into a lake while visiting a friend in Tennessee. It's why he talks about attempting bungee jumping and sky diving once he's feeling up to it.

Mostly, though, David is eager to get married, have kids, create a family that echoes his own. But he worries about his girlfriend becoming a caretaker.

He hopes this kidney will hold out even longer than the last, keep him far from the dialysis room so he can spend time inspiring others to donate. He'd like to reach out to young donor recipients, tell them his story, hope they learn from his mistakes. He knows how chronically ill children can feel alone.

Although diagnosed with stage five renal failure, which means a total dependency on organ donation or dialysis, David sees a rich future.

His family has given him yet another chance at life. He is anxious to live it well.


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Thursday, October 18, 2012

Getting the ball rolling..

Today was Parker's dialysis clinic, which was a day long adventure at Children's Hospital. I'm always nervous when it comes to these appointments, because there is so much stress on his growth and lab values. Today, though, was a good day. Today we sat down with the transplant coordinator and signed consents to begin the transplant evaluation process! He gave us our "transplant packet" and went over everything with us and answered all of our questions. He is calling our insurance to get approval on getting the testing started. And next month we get to meet the transplant Nephrologist and transplant surgeon to discuss things further! For once, I am excited for our next appointment!

Once our insurance approves the evaluation process, we can start having potential donors tested. Once we find a match, and he reaches 10 kg, which is 22 lbs., he will be ready to get a new-slightly used-kidney!

I am one happy Momma today!


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Location:Big day!