I'm not even sure where I should begin. So much has happened in the last few months since my last post.
The holidays have come and gone. Thanksgiving was spent with family celebrating and eating yummy food. Christmas, however, was germ stricken. Parker started getting sick around the 19th of December and eventually ended up in the hospital. Not until we opened our gifts, though. Since we were a little under the weather, we spent Christmas Day at home, just us. It was actually quite relaxing. I'm thinking of starting this as our new tradition!
Just a few days after Christmas, Parker's cough took a turn for the worse. We found out that it was actually RSV. His oxygen levels were dipping into the 80's and we ended up having to spend a few days in the hospital with a nasal cannula, just to give him an extra boost to breathe.
While he was having such a hard time breathing, we had an even harder time getting him to eat. When he would suck the bottle, he was getting even less oxygen. So, we decided to put an NG feeding tube in to give him some relief.
He tolerated the feeding tube really well, so we left it in. At this point, we were still getting grief from his kidney team to get more calories in him, so this tube made his renal team happy.
Just a few weeks later, Parker ended up getting peritonitis- infection of the dialysis area. This means another hospital stay with antibiotics via dialysis.
While we were in the hospital, Parker learned all kinds of new tricks. He learned to pull himself to stand; therefore, we had to raise the rails all the way up on his crib-or "prison" like we call it.
He learned to clap. He now claps along to music and especially loves clapping for himself. Even when he is being fussed.
Once we were home and germ free for a while, his weight picked up significantly. He is now a whopping 10 kg-the required weight for transplant! We meet with the head transplant nephrologist, Dr. Veheskari on March 27th. Hopefully, he will get the ball rolling on testing.
We found out today that his spleen is enlarged. We knew that his liver and spleen would be involved eventually. It's actually part of this disease called CHF-Chronic Hepatic Fibrosis- that comes with ARPKD. The trick is they cannot tell you when the liver will deteriorate, or how bad it will be. Each case is different. The good news is that Parker's liver looks great other than being really big. We just have to monitor his spleen for now and see how fast it progresses.
Overall, we are doing really well. He is happy, usually healthy, and growing-both physically and developmentally. His therapists are proud of his progress and we are beyond ecstatic. He crawls, scoots, pulls up on furniture, and walks around holding onto the furniture.
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.
By Corina Knoll, Los Angeles Times
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.
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!
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.
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!
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.
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.
