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.”
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.
An endowment created by Charlie's parents, Kay and Doug Hanafin, funds research that will improve care for kids and teens with kidney disease.
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
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 2007and 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 too besity. 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.