Healthy Kidneys, Healthy Lives
Seattle Children's Nephrology team takes an innovative approach to providing teens with chronic kidney disease what they need to live the lives they choose.
Charlie Hanafin, 18, meets with transplant coordinator Marian Sinkey every month. “Before
we ever talk about my labs, we catch up,” he says. “Marian wants to know what's going on in my life.”
High school senior Charlie Hanafin is
on the go most days keeping his grade
point average high, training with the
golf team to win state, filling out college
applications, leading the cheering
section for his school’s basketball team
and spending time with friends.
But no matter where he is or what
he’s doing, Charlie is reminded of his
most important priority every 12 hours.
His cell phone beeps at 7 a.m. and
7 p.m. with the text message, “It’s time
to take your meds,” set up by Seattle
Children’s pharmacist Hyacinth Wilson.
Ongoing support like this is a key
ingredient in Charlie’s health and
success since a new kidney – donated
by his dad and transplanted at Children’s – saved his life four years ago.
Making the kidney last
Through their research, Drs. Jodi Smith and Joseph Flynn are improving national standards of
practice for kidney transplant and hypertension, respectively.
The name of the game for transplant
recipients like Charlie is tricking
their immune systems to accept the
organ. It takes a delicate balance of
immunosuppressive medications:
too little medication and the body
rejects the kidney; too much, and
viruses can damage the organ.
Pediatric kidney specialists
Drs. Jodi Smith and Ruth McDonald
study both sides of this see-saw
with an eye toward extending the
life of transplanted kidneys as long
as possible.
“If we’re doing our job right,
Charlie’s immune system should not
notice that his dad’s kidney is there,”
explains Smith.
Research improves lives
With funding from the National
Institutes of Health (NIH), Smith and
McDonald collaborated with a select
few pediatric nephrology centers
throughout the country to develop
steroid-free approaches to maintaining
the health of transplanted kidneys.
Eliminating steroids improves a
patient’s quality of life by reducing
the risk of high blood pressure and
eliminating unwanted side effects, such
as weight gain and stunted growth.
In addition, their pioneering work
to track viruses has improved the
standard of care for transplant patients.
Today, children and teens are routinely
screened for common viruses that
can attack the body and transplanted
kidney if immunosuppression levels are
too high.
Smith is now investigating viruses
that produce no symptoms. Her results
indicate that kids who carry these
viruses have more kidney damage
two years after transplant than other
transplanted kids – an important
finding in the quest to extend the life
of the organ.
“The body’s response to virus is to
ramp up the immune system to get rid of it,” explains Smith. “But when the
immune response ramps up, this may
cause inflammation in the transplanted
kidney, which can permanently scar the
organ and lead to loss of function.”
Her next goal is to study how viruses
damage the kidney with the goal of
finding a way – perhaps a drug therapy – to prevent the injury from ever
taking place.
Keeping teens on track
Seattle Children's Nephrology team leverages teens' favorite method of communicating –
texting – to counter the high rate of kidney rejection this age group experiences because they
often forget to take their medications.
Though research is extending the
length of time kids keep their organs,
one thing stays the same:
immunosuppressive medications must
be taken at the same time each day.
Missing even a few pills over just a few
weeks can permanently reduce kidney
function and shorten the organ’s
lifespan. Only a few missteps like that
and the kidney will fail.
“Teens often forget to take their
meds or they take them at the wrong
times,” explains transplant coordinator
Marian Sinkey. “This is one of the
reasons why this age group has one of
the highest rates of kidney rejection.”
To target this high-risk age group,
Sinkey, Wilson and others reach out to
teens by setting up daily reminders via
cell phone or smart phone and making
special arrangements with pharmacies
to package meds in daily-portioned
bubble packs. The team recently
received a grant from the NIH to
investigate what makes it hard for
teens to take their medications and
develop strategies to help them
succeed. The study will even track how
often teens open their pill boxes!
“Teens often forget to take their meds
or take them at the wrong times – which is why they have one of the
highest rates of kidney rejection.”
Marian Sinkey, transplant coordinator
The Division of Nephrology holds an
outpatient clinic for transplant patients
several times a month. There, dietitians,
social workers and transplant
coordinators work alongside providers
to ensure that every teen gets plenty
of one-on-one time – a strategy aimed
at resolving social or medical issues
that could lead to a kidney rejection
episode.
Building life skills
Seattle Children’s transplant clinic is one of
only a few in the nation where pharmacists like
Hyacinth Wilson teach teens to take and reorder
their meds without the help of their parents.
Charlie is a success story. He has strong
family support – a big factor in keeping
a teen’s transplanted kidney healthy.
Not all young adults are so lucky.
“It’s tough enough dealing with the
challenges of being a teenager,” says
Wilson. “Then add in having to
remember to take your meds every
single day of your life – and reorder
your meds – when your parents aren’t
reminding you.”
Pharmacists like Wilson attend every
transplant clinic and work with teens
to build the skills they need to manage
their meds without the help of their
parents.
Once a year the transplant team
offers a half-day “transition clinic”
for teens age 15 and up to help them
develop the self-management and
advocacy skills needed to shift from passively receiving care to actively
managing their condition. This is a big
step toward helping them make the
transition to the adult healthcare
system. The clinic makes it fun – there
are medication trivia games and
fill-the-pill-box races – and it gives the
clinicians a chance to talk candidly with
teens about the effects of drinking and
pregnancy, planning for medical care
when they move away from home or go
away to school, and getting insurance
as an adult.
“Before my transplant, everyone
in Nephrology kept telling me, ‘don’t
quit,’” recalls Charlie. “I feel like they
showed me what I’m capable of.
And now, after the transplant, they’re
helping me succeed.”
Donations make a difference
An endowment created by Charlie's parents,
Kay and Doug Hanafin, funds research that
will improve care for kids and teens with
kidney disease.
Inspired by their son’s journey, Charlie’s
parents, Kay and Doug Hanafin, created
an endowment that provides critical
funding for research about kidney
transplant that isn’t otherwise funded.
“How does a child keep the
transplanted kidney for as long as
possible?” asks Kay Hanafin. “How does
a child have as normal of a life as
possible on dialysis or after transplant?
Children’s is at the forefront of finding
new answers to these questions and
we are behind them all the way.”
Lowering the Pressure
Arianna (left) is the third generation in her
family with hypertension – the result of a
genetic disorder she shares with her mom,
Robin (right), and grandmother.
Arianna Giddings is serious about
running track. In the seventh grade,
she hid symptoms of chest pain, fatigue
and dizziness from her mom so she
could continue running relays. But
during her annual physical in her
hometown of Sedro-Woolley, Wash.,
her primary care provider noticed her
blood pressure was high – very high – and referred her to Seattle Children’s
hypertension clinic.
There, Arianna met Dr. Joseph Flynn,
an expert who helped develop the
national clinical guidelines for how
pediatric hypertension should be
treated. Flynn joined Children’s in 2007
and started the region’s only clinic
aimed at addressing the needs of the
growing number of children afflicted
with high blood pressure.
Arianna’s condition is caused by a
genetic defect in the way her kidneys
handle sodium. However, most
childhood hypertension is linked to
obesity. Today it’s more common than
Type II diabetes, and if unchecked it
will result in an entire generation of
kids having heart and kidney disease
in their 30s and 40s.
Flynn is working to understand
how this devastating trend affects
children.
His latest research – particularly
relevant for Arianna, who is of
Puerto Rican, Guyanese and African
American heritage – shows there’s
an increased prevalence of
hypertension in children of African
and Caribbean descent. When they
have high blood pressure, it’s higher
than other groups; plus, these kids
tend to have more heart valve issues
and be at greater risk for heart and
kidney disease.
Flynn manages Arianna’s
hypertension with medication – and she controls her diet by avoiding
salty and processed foods. At age 15,
she’s an honor student who also
plays volleyball and hopes to qualify
in sprint to get to the state track
competition.
“As Arianna grows and her body
changes, we know Dr. Flynn is there
for us. Together, we’re setting
Arianna up for a lifetime of health,”
says her mom, Robin Giddings.