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Share Your Story
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AMY FRAKOWIAK, Houston Texas, Kidney transplants, 2009 and 2018
My story starts when I was 15 years old when, after I got home from a summer camping trip, I noticed a small bite on the bottom of my foot. A few days later, two red lines began to run up both sides of my foot and I had a temperature of 103. My mom rushed me to the hospital, and the doctors found a problem with my kidneys. They thought kidneys might have been stressed due to the infection and strong antibiotics, but a few months later, there was still a problem. A biopsy showed I had IgA Nephropathy and I might need a transplant in the future.
At 25, I started peritoneal dialysis and was on dialysis for the next 3 1⁄2 years. Then, on May 18, 2009 I received the call I had been waiting on for so long. The nurse from St. Luke’s Hospital said they had a kidney, but the function was not optimal and asked if I still wanted it. My kidneys were not working at all, so I said yes. Around midnight, I went into surgery and received my new lease on a normal life.
Now, I was able to do things without restrictions because of a selfless donor and her family.
My deceased donor was Ninghe, an 18-year-old foreign exchange student from China and an only child due to the family restrictions that China. I was able to speak to her best friend Vickie in 2011 after I competed in the World Transplant Games in Sweden and, in 2012, I was able to meet Vickie at a donor ceremony in Denver, Colorado.
She passed along my donor family’s email address and I emailed them. It wasn’t long before I received a response in Chinese. Since my donor family did not speak English, I had to use Google translate to decipher their message, which was heart breaking but really sweet. They told me about their daughter and her giving spirit and wanted me to be involved in their lives. They even invited me to their home to visit. I have not visited yet but I plan to meet the family who made the decision to give me life.
Shortly after the transplant I was able to attend my first Transplant Games of America in Madison, WI. There are no words to explain this incredible event, which gives donor families and living donors the opportunity to see how their decision to give life made a difference. At the same time, it gives recipients an opportunity to honor their donor and show the public how organ donation can provide a healthy and active lifestyle. The World Games and the US Games both make such an impact on the transplant community I decided to make them regular events. Since 2010, I have competed in all the U.S. Games and and have been to three World Games.
I accepted the role of Texas team manager for the Games in 2016.
In November 2018, I was blessed again with the gift of life! Nine years after my first transplant my body’s immune system had taken a toll on the transplanted kidney, which gradually began to fail. If I couldn’t find a living donor, I would be waiting a minimum of eight years and would have to go back on dialysis. So, I set out on a mission with the help of many friends to find my next hero.
I had shirts made asking for a living donor and family and transplant friends wore them and posted pictures on social media. Kim, a childhood friend of my good friend and liver transplant recipient Katrina
heard about it, reached out to St. Luke’s and was a great match. On November 21, 2018 she became my living donor.
I work at St. Luke’s as a coordinator assistant in the kidney transplant evaluation office, but I’ve enrolled in the nursing program at UT-Arlington to become a nurse coordinator in kidney transplant. I want to inspire and provide hope to patients that there is life after transplant and raise awareness about organ donation. I can’t imagine a better way to spend my time.
Sandy Crowder Eckles, Houston, TX, kidney transplant, 2010
I call it a God thing. Really, two God things.
Both of them involve transplants. Both were gifts of life. And they happened a little over five years apart.
The first one came in 2005 not long after my son Jerry turned 15. He was a freshman at Lamar High School and had just gotten his driver’s license. He came up and asked, ‘Mom, can I put that I want to be a donor on my license?”
I said absolutely.
A few months later, he was killed in a ski accident in Breckenridge during a trip with his youth group from Houston’s St. Luke’s Methodist Church. The first call I got after it all happened was from the transplant people in Colorado. They said, “We were calling to see if ….”
They didn’t get any farther. I just said absolutely. Those were his wishes. That’s what he wanted. I didn’t have to think twice about it.
Because he was killed instantly on the ski run, his heart, lungs and other organs weren’t viable for transplant. But we were able to give his eyes, bone, tissue and skin.
A year later (I THINK THIS IS RIGHT), I was diagnosed with lupus and medullary sponge kidney, which means your kidneys have holes in them. I was fortunate that I was able to do peritoneal dialysis at home at each night, so I slept hooked up to a machine for 8 hours.
I can’t say it was horrible because I was able to travel in the United States. They would send my machine and take care of everything I needed. So, I was very lucky, but not everybody can do it like that.
When I started the transplant process and people were tested to be a donor, the program wanted a 100 percent match. It was very difficult to find. They told me that finding a match would be nearly impossible.
But in 2009 – about three years into the dialysis – I was visiting my sister Patty in Port Aransas and met at friend of hers who had undergone a kidney transplant in San Antonio. I was on the transplant list in Houston but wasn’t getting any matches. She told me I really needed to talk to Dr. Adam Bingaman, the surgeon who did her transplant. He had pioneered a successful, paired exchange transplant program that wasn’t available in Houston.
At Thanksgiving, we were back down in Port A and I saw that Dr. Bingaman was having a clinic in Corpus Christi, so I thought, well, I’ll just go down and meet him. Why not?
My husband Tom and I went to the clinic together. Dr. Bingaman was young and cocky and after explaining everything, he told me “I can have you a kidney within 10 months.” When we left, I told Tom this guy was going to do just what he said.
And he did.
Ten months later – on September 1, 2010 – Dr. Bingaman did the transplant at Texas Transplant Institute at Methodist Specialty and Transplant Hospital in San Antonio. As it turned out, my niece’s ex-husband was tested, and we were part of a 3-way swap. He wound up donating his kidney to someone else and I got kidney from an unknown donor who was a better match. The surgeries were all done at the same time. If someone had gotten sick, it would have ruined the chain, but they didn’t.
After the surgery, I had to go to San Antonio for checkups three times a year. Now, I only have an annual checkup and it’s here in Houston.
I have to tell you, one of my favorite stories from my transplant floor was about a boy from Virginia who was 17 (YOU SAID 18 in 2019 magazine story) and on dialysis and doctors were telling him he would be on it the rest of his life. His mother researched transplants and found Dr. Bingaman and we were transplanted the same week. It was amazing. He was able to play sports afterward and he’s living a great life now.
So am I. I have my life back. I’m blessed.
To this day, I don’t know who donated to me or any of the people whose lives were touched by Jerry’s donation. It doesn’t matter. That the donations happened, does.
I look back now and it’s just pretty amazing the way everything came together. Both times. Now you know why I call them God things.