Overnight it all changed.
She was diagnosed with a form of kidney disease. She spent the next four years in and out of hospitals clinging to life long enough for her body to grow big enough to host an adult kidney. Her only shot at survival was a kidney transplant at age 6.
“It was horrible,” said her mother Melissa Whitaker. “One day my little girl was playing outside and puffed up a little. Next thing I’m hearing ‘kidney failure.’ I had no idea what that was or how our life would change.”
Makenzie, now 14, is lucky. Most wait for years for a transplant because of a lack of donors and the need for a good match. More than 90,000 people are currently on the waiting list for a kidney transplant nationwide. Makenzie’s father, a firefighter for the city of Ocoee was a good match.
“I just wish more people knew about this disease so they could prevent it. And I wish more people would become organ donors,” Makenzie said. “We could save a lot of people that way.”
Makenzie is one of the estimated 26 million people who suffer from kidney disease. There is no cure and most people are clueless about the disease, which doesn’t present symptoms until it is too late.
Makenzie, her mother and University of Central Florida kidney specialist Abdo Asmar are participating in the National Kidney Foundation 2012 Orlando Kidney Walk on Sunday, March 25, at the University of Central Florida. Registration starts at 8 a.m. and the noncompetitive walk gets started at 9 a.m. at UCF’s Memory Mall.
The three advocates hope sharing their story will help people follow easy steps to prevent the disease and detect it earlier to better the odds of survival.
Kidneys are the body’s workhorses. They filter waste products and excess fluids from the blood, regulate the balance of salts and other chemicals in the body, and release hormones important for blood production, blood pressure regulation and calcium balance.
“I would call it a silent epidemic,” said Asmar, a practicing nephrologist and an assistant professor at the UCF College of Medicine. “By the time you present symptoms you have the disease and it’s a matter of how severe the condition and how we slow down the progression.”
For some people, therapeutic treatments can slow down progression of kidney disease for years. Eventually the disease in some patients progresses, leading to dialysis and the need for a transplant. Nationwide about 383,000 people depend on dialysis for survival, including 23,000 in Florida.
Asmar said one of the earliest signs of kidney disease is the appearance of protein in the urine.
“The kidneys are very smart organs,” he said. “If they start to have problems they compensate. So you could have 50 percent of the filters in your kidneys not functioning, and have absolutely no symptoms. It’s only when the kidney function drops significantly that patients start experiencing the symptoms.”
And then the options are limited.
So get tested annually and live a healthy lifestyle, Asmar suggested.
The list of tips is familiar. Don’t smoke, avoid salt, maintain good blood pressure and a good weight, exercise and get an annual checkup that includes urine and blood work.
Those at most risk for kidney disease are patients with diabetes, hypertension and those who are obese. A small percentage of people have other conditions that trigger kidney disease. For example, Makenzie had Focal and Segmental Glomerular Sclerosis, one of several diseases in the Glomerulonephritis family. The diseases cause an array of problems in the kidney including inflammation and damage to the kidney’s filtering units.
Once patients are diagnosed with kidney disease that puts them at greater risk for heart disease and a host of other problems, Asmar said.
“If there’s one thing I want people to know is that all it takes is a urine test and simple blood work to know, to catch it early,” Melissa Whitaker said.
Makenzie says her family did a great job of making her early years as positive as they could be. Today, she rides dirt bikes, plays the trumpet for the Tavares High School band, helps her two younger siblings with homework and regularly speaks to other kids with kidney disease at Arnold Palmer Hospital for Children, the National Kidney Foundation and other organizations.
And she’s not done yet.
“I plan to become a pediatric nephrologist, that’s a kidney doctor for kids,” she explained. “I’m already taking a medical elective at Tavares. I think having been through it, I could really understand and help more than I could by simply being a speaker. I want to make a difference.”
For more information on the walk, visit www.orlandokidneywalk.org . Teams are forming and money raised will benefit the National Kidney Foundation of Florida, which funds free kidney screenings throughout the state through its Kidney Early Evaluation Program, research to find treatments and a cure to kidney disease.