Organizations, businesses join to raise money for kids with kidney disease

Battling kidney disease

Organizations, businesses join to raise money for kids with kidney disease

BY BRIAN PASSEY • bpassey@thespectrum.com •
May 10, 2010

Kidney disease can drastically alter the lives of
those who struggle with it. At its most extreme
stage, the disease requires dialysis treatments a few
times a week for hours at a time to replicate the job
normally done by functioning kidneys.

That why a few local organizations and businesses
have joined together to sponsor a Poker Run this
Saturday to raise money a camp for children with
kidney disease.

Sue Musto, a local representative for the Utah Kidney
Foundation, says it helps the children feel normal
because they are around others who face the same
challenges.

There are a variety of factors that can lead to kidney
disease, says Dr. Carlos Mercado, medical director
at Liberty Dialysis Center in St. George. The most
common causes are diabetes or hypertension.

Less common are infections that may limit or
eliminate kidney function. That's what happened to
Jeane Taylor.

It began with a simple ovarian cyst but the resulting
complications almost killed Jeane.

The cyst became so heavy it tore a tube connected
to the ovary, preventing blood flow to the organ.
Soon an infection was releasing toxins into her
bloodstream.

"My body just started shutting down," Jeane says.

Doctors administered a medication that saved
Jeane's life by continuing the blood flow to her vital
organs, but complications led to the amputation of
her fingers and lower legs.

The drug also limited the blood flow to her kidneys.
She says her doctors though she would regain the
use of her kidneys but they eventually shut down
and in January of 2009 she began hemodialysis, the

most common form of dialysis where blood is
removed from the patient, moved through a filter
where it is cleaned of toxins and waste products,
then returned to the patient's body.

"I was scared to death finding out my wife was going
to have to go on dialysis," says Jeane's husband,
Tony.

At first the dialysis was difficult for her. She would
become nauseated and vomit. Now after more than a
year on dialysis she mostly just feels run-down after
treatments.

Jeane remained hospitalized in Salt Lake City for
most of 2009 and even stayed up north with her
parents for a time after she was released while she
attended various follow-up appointments with
doctors. She only recently returned to her family in
St. George where she is the mother of two young
boys, ages 5 and 7.

"They are my heroes through all of this, honestly,"
she says of her boys.

They didn't even care the first time they saw her
hands without fingers.

"They thought it was kind of cool that she would get
a robot hand and robot leg," Tony says.

Jeane has been using prosthetic legs to walk and
recently five students from Brigham Young
Advertisement

University fashioned a prosthetic hand-like device
that allows her to clamp down on objects like
utensils so she can eat.

Tony and Jeane say the boys did struggle somewhat
with a sense of abandonment as their mother was in
the hospital and their father often traveled to be with
her while they stayed with family members.

Yet the boys bonded and learned to look out for
each other.

"They really think about each other now," Tony says.

It's one of the many blessings the family has found
among the challenges.

"There's a lot to live for," Jeane says. "We're pretty
happy now."

Peritoneal dialysis

Life is about to become much easier for the Taylor
family..

Up until last week, Jeane and Tony were still waking
early every Monday, Wednesday and Friday to travel
to Liberty Dialysis Center for her hemodialysis
treatments. The early morning trips prevented Tony
from starting his work as an elevator and escalator
repairman until later in the day, meaning he arrived
home from work later.

Because Jeane is slowly relearning how to do
everyday tasks like cooking and cleaning without
her fingers and lower legs, many of those
responsibilities have fallen to Tony as well.

"She still does a lot but it takes her about four times
as long to do anything," he says.

On Thursday, though, the couple went to Liberty
Dialysis to be trained for peritoneal dialysis, which
utilizes an abdominal catheter to insert a solution
that cleans the blood inside the body nightly while
the patient sleeps.

"It replicates the kidney function," says Erma Rainey,
a register nurse at Liberty Dialysis.

Richard Eaton, manager at Liberty Dialysis, says

peritoneal dialysis is also gentler on the heart.
However some people are unable to do this type of
dialysis because of surgeries or infections. Others
simply don't want to have to worry about doing it
nightly.

For Tony, however, it's easier on him to learn how
to operate the machinery for his wife.

"This way we'll be able to put her on at night and I'll
be able to take her off in the morning and head to
work," he says. "She doesn't even have to wake up."

They would have made the switch from hemodialysis
to peritoneal dialysis earlier but Tony says they
were trying to save one of his wife's remaining feet.
Eventually it had to be amputated as well and now
she is in good enough health that they are able to
do the nightly dialysis.

From Tony's point of view, his wife has come a long
way from when doctors were telling him she
probably wouldn't make it and nurses avoided
talking to him because they didn't know what to say.

"You're just grateful for every little moment because
it can change so quickly," he says. "I thought I was
going to be raising two little boys as a single dad."

Treatment and prevention

While a blood infection like Jeane faced may not be
avoided. Mercado says there are steps people can
take to ward off kidney disease or to catch it in the
early stages before it worsens.
Advertisement

"Awareness, awareness, awareness!" he emphasizes.

Most people don't even think about their kidneys
until they have a problem with them. Yet many are
likely in the first of the five stages of kidney disease
and don't even realize it, Mercado says.

It is important to have regular doctor's visits. If
detected early, Mercado says it is possible patients
will never face dialysis or the need for a kidney
transplant.

It's also important to maintain a healthy blood
pressure and to avoid the excess uses of anti-
inflammatory medications.

Besides the problems of kidney disease itself,
Mercado says it can also affect other organs like the
heart.

If kidney disease reaches the final stage, dialysis is
necessary. However, dialysis is more like patching
up the problem rather than fixing it.

"Our goal is to keep them on dialysis as a bridge
until we're able to get them a kidney," Mercado says.
"We have a high rate of transplants here."

That's the stage Jeane has arrived at. She's ready for
a transplant but she still has to find a donor to
match her. Many family members and friends are
willing to donate a kidney to her but they still have
to determine if any of them are a match. If not, she'll
be added to a list of those waiting for a transplant.

Until that time, Jeane is simply enjoying the silver
linings to the dark clouds of the last 17 months.
Tony admires his wife's outlook.

"I'd like to think I would be as strong as she was but
I don't know that I would," he says.

Among the blessings were the BYU students who
spent so much time developing the prosthetic hand
for her.

Jeane says she also treasures the relationships she's
developed with the staff at Liberty Dialysis, calling
them "genuine."

The Taylors say the ordeal has helped them to be
grateful for everything they have. They see things
differently now.

"We are probably actually happier than 90 percent of
the population that has money and all of their
appendages," Jeane says. "This has actually been a
tremendous blessing in our lives."

Those are the same kind of feelings the Youth
Transplant Camp is designed to bring to the
children ages 8 to 17 who attend it. That's why
Liberty Dialysis Center and Zion Harley-Davidson
are among those sponsoring the Poker Run event
this Saturday to benefit the camp.

"They never turn any kid away," Musto says. "There's
no camp like it throughout the United States."

All motorcycles or cars are welcome to join.
Registration is from 9 to 10:30 a.m. Saturday at Zion
Harley-Davidson, 2345 N. Coral Canyon Blvd.,
Washington City. There will be live music at noon
and a drawing with prizes.

Advertisement

If You Go

What: Poker Run to benefit Youth Transplant Kamp.

When: Saturday; registration from 9 to 10:30 a.m.

Where: Zion Harley-Davidson, 2345 N. Coral Canyon
Blvd., Washington City.

For More Information: Call 673-5100 or visit www.
zionhd.com.