This story was told to me by Tony via Facebook.
Tony is a three-time kidney transplant recipient. He was born in 1984 in Washington, DC with a congenital disease known as Eagle-Barrett syndrome, or prune belly syndrome. In short, those with Eagle-Barrett are missing all or part of their abdominal muscles, which results in an inability to urinate properly. The backup of urine in the body leads to significant complications, oftentimes including renal failure.
Tony spent the first three years of his life in the hospital. He told me that he was born with over a gallon of fluid in his belly–an astronomical amount for an adult, let alone an infant. (Stomachs typically hold about 1.5 liters of fluid before they become distended.) All that fluid floating around inside of him “turned his organs to mush,” so that from the moment he came into this world, he was already in renal failure. The doctors said he had a year to live.
Eighteen reconstructive surgeries later, Tony’s father gave him his first kidney at the age of three. But the surgeries didn’t stop there. While Tony’s transplanted kidney did its job, the doctors continued to operate to repair and salvage other parts of Tony’s body that were failing. By the time he was twelve years old, he’d spent the majority of his life in the hospital. It seems there should’ve been a light in the distance by then, but there wasn’t. Before he made it to high school, the kidney Tony’s father had donated to him failed.
This is something I didn’t realize about kidney donation until I started the process myself: a transplanted kidney doesn’t last forever. Whether after one day or twenty years, at some point, the recipient will need another gift of life. In Tony’s case, he’d need more than that.
Still twelve, Tony started dialysis. Fortunately, not long afterwards, his mother donated her kidney to him. Years later, Tony had routine gum surgery, which resulted in an infection–one of the most common, yet deadly, risks of surgery, especially surgeries the magnitude of Tony’s. That infection spread through Tony’s body and overwhelmed his transplanted kidney, reducing it’s function to 13%. His doctor started him on dialysis immediately.
But dialysis involves fistulas and grafts, which leave the body susceptible to more infections, which Tony continued to contract. After eight years of dialysis and infections to boot, there was nowhere left on his body to put dialysis access. The doctors gave Tony the heavy news that he’d have to come off dialysis. Without another transplant, he had maybe a year to live.
“I was scared and frustrated,” said Tony. “My disease made me disbelieve in god and the devil. The only thing that made sense to me was that we all came into the world the same way and we all go out the same way.”
There was still hope, though. In 2015–the year Tony thought would be his last–his sister came forward and donated one of her kidneys. So far, it’s working great. “I’m thankful every day that she did it. I’m happy, healthy, and most of all, I’m alive. I take one day at a time, one needle-stick at a time. Or three or four. Depends how many it takes to get blood.”
A sense of humor isn’t the only thing that keeps Tony going. He also has three nieces and a nephew. “They’re one of the reasons I don’t want to die,” he said. “If I die, who’s going to teach my nephew how to play football or treat a lady or play video games?”
“I wanted to share my story,” he said, “because maybe there’s someone else out there with prune belly syndrome, and maybe they’ll learn something from my experience.”
Tony was the first to tell me his story, and what a way to begin. I’d never heard of prune belly syndrome nor the complications it causes. I remain blown away that he endured eighteen surgeries by the age of three. It speaks both to the ability of the human spirit to endure as well as the marvels of modern medicine.
Many other diseases only stem from one or two things, but kidney disease can come from genetics, diabetes, high blood pressure, drug use, poor diet, and a host of other things we too often take for granted. Tony is someone who has never had the luxury of taking his health for granted, and that is a humbling realization for me.
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