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.
“Beforewe 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 ison the go most days keeping his gradepoint average high, training with thegolf team to win state, filling out collegeapplications, leading the cheeringsection for his school’s basketball teamand spending time with friends.
But no matter where he is or whathe’s doing, Charlie is reminded of hismost important priority every 12 hours.His cell phone beeps at 7 a.m. and7 p.m. with the text message, “It’s timeto take your meds,” set up by SeattleChildren’s pharmacist Hyacinth Wilson.
Ongoing support like this is a keyingredient in Charlie’s health andsuccess since a new kidney – donatedby 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
The name of the game for transplantrecipients like Charlie is trickingtheir immune systems to accept theorgan. It takes a delicate balance ofimmunosuppressive medications:too little medication and the bodyrejects the kidney; too much, andviruses can damage the organ.
Pediatric kidney specialistsDrs. Jodi Smith and Ruth McDonald study both sides of this see-sawwith an eye toward extending thelife of transplanted kidneys as longas possible.
“If we’re doing our job right,Charlie’s immune system should notnotice that his dad’s kidney is there,”explains Smith.
Research improves lives
With funding from the NationalInstitutes of Health (NIH), Smith andMcDonald collaborated with a selectfew pediatric nephrology centersthroughout the country to developsteroid-free approaches to maintainingthe health of transplanted kidneys.
Eliminating steroids improves apatient’s quality of life by reducingthe risk of high blood pressure andeliminating unwanted side effects, suchas weight gain and stunted growth.
In addition, their pioneering workto track viruses has improved thestandard of care for transplant patients.Today, children and teens are routinelyscreened for common viruses thatcan attack the body and transplantedkidney if immunosuppression levels aretoo high.
Smith is now investigating virusesthat produce no symptoms. Her resultsindicate that kids who carry theseviruses have more kidney damagetwo years after transplant than othertransplanted kids – an importantfinding in the quest to extend the lifeof the organ.
“The body’s response to virus is toramp up the immune system to get rid of it,” explains Smith. “But when theimmune response ramps up, this maycause inflammation in the transplantedkidney, which can permanently scar theorgan and lead to loss of function.”
Her next goal is to study how virusesdamage the kidney with the goal offinding a way – perhaps a drug therapy – to prevent the injury from evertaking 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
theyoften forget to take their
Though research is extending thelength of time kids keep their organs,one thing stays the same:immunosuppressive medications mustbe taken at the same time each day.Missing even a few pills over just a fewweeks can permanently reduce kidneyfunction and shorten the organ’slifespan. Only a few missteps like thatand the kidney will fail.
“Teens often forget to take theirmeds or they take them at the wrongtimes,” explains transplant coordinatorMarian Sinkey. “This is one of thereasons why this age group has one ofthe highest rates of kidney rejection.”
To target this high-risk age group,Sinkey, Wilson and others reach out toteens by setting up daily reminders viacell phone or smart phone and makingspecial arrangements with pharmaciesto package meds in daily-portionedbubble packs. The team recentlyreceived a grant from the NIH toinvestigate what makes it hard forteens to take their medications anddevelop strategies to help themsucceed. The study will even track howoften teens open their pill boxes!
“Teens often forget to take their medsor take them at the wrong times – which is why they have one of thehighest rates of kidney rejection.”
The Division of Nephrology holds anoutpatient clinic for transplant patientsseveral times a month. There, dietitians,social workers and transplantcoordinators work alongside providersto ensure that every teen gets plentyof one-on-one time – a strategy aimedat resolving social or medical issuesthat could lead to a kidney rejectionepisode.
Building life skills
Seattle Children’s transplant
clinic is one ofonly a few in
the nation where pharmacists
likeHyacinth Wilson teach
teens to take and reordertheir
meds without the help of their
Charlie is a success story. He has strongfamily support – a big factor in keepinga teen’s transplanted kidney healthy.Not all young adults are so lucky.
“It’s tough enough dealing with thechallenges of being a teenager,” saysWilson. “Then add in having toremember to take your meds everysingle day of your life – and reorderyour meds – when your parents aren’treminding you.”
Pharmacists like Wilson attend everytransplant clinic and work with teensto build the skills they need to managetheir meds without the help of theirparents.
Once a year the transplant teamoffers a half-day “transition clinic”for teens age 15 and up to help themdevelop the self-management andadvocacy skills needed to shift from passively receiving care to activelymanaging their condition. This is a bigstep toward helping them make thetransition to the adult healthcaresystem. The clinic makes it fun – thereare medication trivia games andfill-the-pill-box races – and it gives theclinicians a chance to talk candidly withteens about the effects of drinking andpregnancy, planning for medical carewhen they move away from home or goaway to school, and getting insuranceas an adult.
“Before my transplant, everyonein Nephrology kept telling me, ‘don’tquit,’” recalls Charlie. “I feel like theyshowed me what I’m capable of.And now, after the transplant, they’rehelping me succeed.”
Donations make a difference
An endowment created by
Charlie's parents,Kay and
Doug Hanafin, funds research
thatwill improve care for kids
and teens withkidney disease.
Inspired by their son’s journey, Charlie’sparents, Kay and Doug Hanafin, createdan endowment that provides criticalfunding for research about kidneytransplant that isn’t otherwise funded.
“How does a child keep thetransplanted kidney for as long aspossible?” asks Kay Hanafin. “How doesa child have as normal of a life aspossible on dialysis or after transplant?Children’s is at the forefront of findingnew answers to these questions andwe are behind them all the way.”
Lowering the Pressure
Arianna (left) is the third
generation in herfamily with
hypertension – the result of a
genetic disorder she shares
with her mom,Robin (right),
Arianna Giddings is serious aboutrunning track. In the seventh grade,she hid symptoms of chest pain, fatigueand dizziness from her mom so shecould continue running relays. Butduring her annual physical in herhometown of Sedro-Woolley, Wash.,her primary care provider noticed herblood pressure was high – very high – and referred her to Seattle Children’shypertension clinic.
There, Arianna met Dr. Joseph Flynn,an expert who helped develop thenational clinical guidelines for howpediatric hypertension should betreated. Flynn joined Children’s in 2007and started the region’s only clinicaimed at addressing the needs of thegrowing number of children afflictedwith high blood pressure.
Arianna’s condition is caused by agenetic defect in the way her kidneyshandle sodium. However, mostchildhood hypertension is linked toobesity. Today it’s more common thanType II diabetes, and if unchecked itwill result in an entire generation ofkids having heart and kidney diseasein their 30s and 40s.
Flynn is working to understandhow this devastating trend affectschildren.
His latest research – particularlyrelevant for Arianna, who is ofPuerto Rican, Guyanese and AfricanAmerican heritage – shows there’san increased prevalence ofhypertension in children of Africanand Caribbean descent. When theyhave high blood pressure, it’s higherthan other groups; plus, these kidstend to have more heart valve issuesand be at greater risk for heart andkidney disease.
Flynn manages Arianna’shypertension with medication – and she controls her diet by avoidingsalty and processed foods. At age 15,she’s an honor student who alsoplays volleyball and hopes to qualifyin sprint to get to the state trackcompetition.
“As Arianna grows and her bodychanges, we know Dr. Flynn is therefor us. Together, we’re settingArianna up for a lifetime of health,”says her mom, Robin Giddings.