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!

Tuesday, September 18, 2012

Being sick..

Is absolutely no fun! I hate to see my "punkin" feeling miserable. We spent the day at the pediatrician's office and Parker has an ear infection, bronchitis, and sinusitis. He received a shot while we were there, an antibiotic, and is starting breathing treatments. This is the first time he truly has symptoms of an illness. He had the flu in March, but only had fever and fatigue. This time we have the snotty nose, congestion, cough, and rattle in his chest. His poor ear looks like it's about to be pulled off in the mean time.

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Sunday, September 16, 2012

Our first PKD Foundation Walk

Today we participated in our first PKD Foundation walk. Going into this event, I was really excited. Although it was over 2 hours away, we still had plenty of family and friends who planned to join us. We stayed nearby in a hotel room for convenience and around 10:30 a.m. people started arriving to meet us. This is where the story goes downhill. As people arrived at Fountainbleau State Park, they noticed a sign that read "Park Closed". A little confused, friends started to venture out, wondering if they were in the wrong location. They weren't. One member of our team found a park ranger, who told us that the walk was cancelled and someone should have been at the gate to inform us. When Jason and I got to the park, we were greeted by three frazzled volunteers. They were not aware of the situation either. Apparently, it was someone higher up in the foundation's responsibility to communicate with the park. This person, however, conveniently forgot to communicate to the participants that the event would not take place. The volunteers were in a frenzy trying to figure out the best way to handle the situation. Angry and embarrassed would be an understatement to how they felt. You could definitely tell. Vehicles were steadily rolling into the drive way and they had no answers. The volunteers came through the best that they could given the circumstances. They did registration off of the tailgate of a truck and found a bike trail for us to walk on. The bike trail was definitely lacking. It smelled like a dump and was extremely narrow- especially when bikers were coming through- but we all came together and walked for a cause, and that's what really mattered.

Yesterday, I was fuming about this situation. I believe that the PKD Foundation's actions were extremely unprofessional. Those who are higher up in the organization didn't even have the gall to show up and handle the situation themselves. The poor volunteers, who were just as unaware as us, were thrown to the dogs. We had over 30 family and friends drive 2 hours to walk down a stinky bike trail. For that, I am truly sorry. I have intentions of contacting the foundation and becoming more involved. My hope is that next year there will be a family friendly event with entertainment for both adults and kids, food, and activities. This walk could have been so much more, but instead it was disappointing.
To the volunteers, thank you for your efforts. You made the best of the situation that you could. To our family and friends, we are extremely sorry that it was such a let down. We are so thankful that you all support us, though. Y'all are AMAZING! Oh and thanks for the pictures Kandace! Lol
Oh, and to Team Alexander the Great.. You guys rock! It was great to see so much support for your family. Hopefully next year will be better! It was so nice meeting you all and look forward to keeping in touch!

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Saturday, September 15, 2012

Nasty, rotten kidneys

Yesterday was officially one year since Parker had his nasty, rotten kidneys taken out. That day was one of the scariest days of the whole process. During birth, I was unusually calm. I don't know how to describe it, other than I knew he would be okay. But, surgery was out of my hands. He was in the hands of a complete stranger that I had only met for 10 minutes. I believe those 5 hours were the longest of my life. If I spoke 2 sentences in that time, that's a lot. I do believe, however, that the surgery saved his life. I believe that surgery is the reason he is doing so well now. So, thank you to Dr. Roth for saving my baby.
Just to give you an idea of exactly how nasty and rotten his kidneys were, here's a picture of them after surgery.

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Good days..

One of the last blogs that I wrote mentioned that Parker was getting an NG feeding tube. He did. It was a long, thin tube going through his nose and into his stomach. He ate by mouth during the day and was connected to a machine, that gave him continuous feeds, at night. This didn't last long. As always, Parker had another plan. He pulled it out twice in the middle of the night. The continuous feeds were too much for him to handle.

Right after he pulled it out the last time, Hurricane Isaac hit. There was so much going on that the tube was the least of my worries. We never put it back in and he is eating just fine.

We went to clinic on September 11th and his team was ecstatic with his growth. He's pretty much back on the chart for length (68cm) and weight (8.07 kg which is roughly 18 lbs) we are going to start growth hormone shots to give him that extra boost, but they are no longer pushing a feeding tube. They have seen that he can eat on his own.

The best part of all is that they said we can start talking to the transplant team! They didn't give us any precise details of when or who, but we are hoping that we will get more info at our next clinic, which is in October.

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Monday, August 27, 2012

My baby is ONE!

Well, technically I am two hours post birthday, but it's been a hectic day. I cannot even begin to believe that an entire year has passed by already. It is crazy to see how his physical features have changed and adapted so that he is the perfect mixture of Jason and I. He looks completely different now, compared to then. His personality is so energetic and happy already, and they say that his energy level will be through the roof after transplant, so say a prayer for us. I still remember that night like it just happened. I can tell you each and every detail like it was yesterday. Okay, so I can tell you most of them. Don't forget that I was drugged at one point. I remember beginning to panic, because I never heard him cry. My panic was a tad delayed, but at this point I was so out of it I could barely lift my head. My poor husband struggled to keep it together, but he did. He was so strong and supportive. He just looked at me and said "He will." Seconds later, Dr. Robichaux was screaming, "Did you hear that? It's him! He's breathing on his own!" Although I could barely hear Parker, those words were the next best thing. Jason went to see him and when he came back he was pale and withdrawn. All of the color was washed from his face and I didn't even worry. I thought that it was because they brought him on the "other side" of the curtain. He has been known to pass out at the thought of medical procedures, so I figured seeing it was too much for him. Little did I know, it was because Parker's chest was caving in with every breath. Jason didn't share this with me until later. He let me go to sleep believing that everything was going to be okay. I was mad about this at first, but I thank him for it now. I just hate that he had to worry alone.

Forty days later, we brought home our miracle. He has come leaps and bounds since that day. He is the best thing that has ever happened to us. I wouldn't change one decision we have made. I am so lucky to have found the resources and doctors that saved him on that day. And people say social media is useless! It helped to save my son! Thank you to Lindsey for your blog! Thank you to my fellow kidney momma's for pointing me in the right direction! Thank you to EVERYONE for the prayers! We are eternally grateful!

Tuesday, August 21, 2012

Feeding tube Part 2

Yesterday we were admitted for Parker to get an NG tube. It's a feeding tube that hangs from his nose. He had one in the NICU so you may remember the pictures. He eats well on his own normally, but sometimes his dialysis wears him out and we have trouble getting all of his calories in. We are so close to transplant that hopefully this will be the boost we need to get there by the end of the year.

This stay,by far, was the most miserable. My child is the happiest baby I know most days. Well, not any more. He is cranky and irritable non-stop. He spent 5 hours yesterday screaming bloody murder. It was-well, still is-rough on all of us.

Last picture tube free

There are actually 4 nurses holding him down.. One is hiding.

Daddy took me for a cruise to try and cheer me up.

My new accessory.

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Friday, July 27, 2012

Getting so big

Wearing my hat like daddy does.
So close, yet so far..
Sitting up like a big boy!
Standing on my own two feet!
Oh so tired!
Two big teeth!
Hey, give me that phone!

My cool guy shades..
My first mohawk..

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One year ago...

A major lesson we have learned  in this household is just how quickly life can throw you a curve ball. Last year on July 22, we went in for a routine ultrasound to check on our healthy baby boy. With excitement and impatience, we sat in the waiting room ready to see Parker again. It had been 7 long weeks since our last ultrasound, and Jason was at work for that one. Just three hours later we were sitting in a very strange waiting room in New Orleans waiting to see a doctor we had never met. This doctor would later tell us that our son would not live. He said those words with such certainty, and in that instant it felt like our whole world had come crumbling down. I can replay each and every moment of that day like I was an outsider looking in. Jason immediately lost it and cried for hours while I became a zombie, literally. I felt all of the color rush out of my skin. I couldn't form sentences, or put one foot in front of the other. Jason practically drug me out of the hospital because I could not move. In the days that followed, I didn't want to leave my bed, while Jason did more household chores than ever before because he couldn't sit still. When I was weak he was strong and vice-versa.

This year on July 22, we spent the day alone with our son. Our miracle baby. We played with toys, watched cartoons, and even had a visit from the tickle monster. I sat in awe of my son, who smiles and laughs more than most healthy children. He has brown hair and hazel brown eyes. He has my chin and his daddy's dimples. He can sit on his own. He can stand with assistance. He can kneel to play with toys. He has two bottom teeth. His favorite cartoon is Mickey Mouse.

He's spent 50+ days in the hospital and I cannot count how many times he's been stuck with needles. He takes medicine every morning and every night and will for the rest of his life. He needs a hero to give him a kidney. But most importantly, he is ALIVE.

So much has happened in the last year, but we count our blessings each and every day. We have a very long road ahead of us, but Parker is a fighter.  

Friday, June 8, 2012

Making the best of the hospital

So many toys!

My morning Mickey Mouse time!

Yucky weather..

Playing airplane with daddy!

Who took my milk?!

Finally asleep. He screamed to eat until he was hoarse!

Shhhh aunt sandy helped me out with that nasty IV! Don't tell the nurse!

I'm bailing out!
I've had a long day..

I missed my chair so much !

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