When the alarm on her mom’s phone goes off, Maritza reaches for her little pill case and, without water or complaint, pops medicine in her mouth and picks right back up with the conversation.
“We call this our new normal,” explains Kara Harper, Maritza’s mom. “Life will never be the way it was before dialysis or her transplant, but we’re okay with that because we made it and we are so thankful for the gift a kidney transplant has given her and our family.”
In 2012, Maritza was a typical first grader – active with friends, Girl Scouts and school. During a family vacation, though, her mom noticed Maritza wasn’t able to keep up. In fact, it seemed like she had no energy at all.
After a couple doctor visits and rounds of antibiotics for a bad bout of strep throat, Martiza’s mom was hopeful she would get back to normal soon. But then Maritza began to struggle to breathe. Her mom rushed her to Akron Children’s Emergency Department and that’s when “normal,” as they knew it, was about to change.
“They took us back in ER to check her breathing and vitals and then immediately, swiftly moved her to the PICU (Pediatric Intensive Care Unit) where they did tests, X-rays, labs, the works,” said Kara. “We knew something was wrong, but we weren’t ready to hear she was in complete kidney and heart failure!”
Maritza had a port inserted in her chest to get the excess fluid out of her body. To get her heart and kidneys stable, the PICU team began intensive therapy and blood transfusions while nephrology nurses worked around the clock to administer and monitor emergency dialysis treatments.
“Because her kidneys and heart were both in distress, the doctors had to figure out what failed first – her heart or kidneys – so we could figure out next steps,” said Kara.
It was her kidneys.
After a week in the PICU, Maritza’s next step was Akron Children’s Nephrology department.
Although her family had no prior knowledge that Maritza had any type of kidney disease, the test results indicated she had a long-term problem, possibly since birth, which slowly progressed to a severe state. Maritza’s name was put on a transplant list and she would remain dependent on dialysis until a kidney became available.
Often the most natural and quickest route to a kidney match is via the parents or siblings who share the same genes but, since Maritza was adopted from Guatemala and her brother was too young to donate, it wasn’t that easy.
“None of us were a match; we weren’t even the same blood type,” said Kara. “So, we just had to wait. Wait for that call. Wait for that gift…I’ve always told Maritza that good things come to those who wait.”
For the next few months, Maritza came to the hospital 3 times a week for hemodialysis, a treatment that uses an artificial kidney via a large dialysis machine to remove waste, chemicals and extra water from the body.
“The dialysis center is an amazing, family-oriented space,” said Kara. “Dialysis is a very complex process and the nurses are right there and fully attentive…They make you feel like you’re the only patient they have…you’re their priority.”
Through it all, Maritza and her family listened and followed every direction given to help things go smoothly.
“Maritza’s family advocated for her, but were willing to work with us because they understood the importance of procedures and treatments to get her well,” said Dr. Shefali Mahesh, director of pediatric nephrology at Akron Children’s. “Maritza’s family is a perfect example of a medical team that includes the patient, family and health-care professionals.”
After the acute crisis was under control, Maritza transitioned to home dialysis. Each night, Maritza’s mom hooked the catheter tube that was placed in Maritza’s stomach to a dialysis machine for 10 hours while she slept. By removing the waste and fluid daily rather than ever couple days at the hospital, Maritza was able to go back to school, now in second grade.
This was also a time when Maritza began to realize what her new normal felt like. Besides taking medications and following a special diet, Maritza wasn’t able to stay over night at sleepovers or stay out late for Girl Scout events because she had to get home for dialysis.
“They say home dialysis is better for kids, but I liked going to the hospital,” said Maritza. “My favorite part was when I was all done and they would bring me the best chicken, mandarin oranges and chocolate chip cookies I’ve ever had!”
And, food, for a dialysis patient – and family – is a really big deal.
“Maritza had to follow a strict diet so if she couldn’t eat it, it wasn’t in our house,” said Kara. “Akron Children’s dietitians do a great job of offering support. It takes so much time to learn how to shop and prepare everything in a totally new way…It was an adjustment for all of us.”
On Jan. 14, 2013, 8 months after her ER visit, the call came – Maritza had a match.
The transplant took and, after a few months, she was back to school with the help of daily medications and regular checkups with her nephrologist, Dr. Mahesh.
But then, a year later, her body began rejecting the transplanted kidney. Maritza had to undergo a very strong anti-rejection treatment that included infusion of high-dose steroids and other high-potency medications to get her immune system back on track.
“Dialysis impacts the way of life for the patient and the family and continues even after transplant,” said Dr. Mahesh. “Maritza has a strict diet, medications and treatments she must follow and her family continues to be meticulous about it. This is especially important because it’s not uncommon for children to lose track of their medical needs when they get older and busier.”
Today, Maritza is able to participate in activities, but no contact sports. She can go to sleepovers, but needs to watch what she eats. She can travel with her family, but needs to pack her medications. Maritza doesn’t like to talk about why she can or can’t do something because to her, it’s normal. It’s her new normal and she’s grateful for it.