Mike Fago is one unlucky guy. He also is an impossibly lucky one.
Born into a family with a history of kidney failure, he fell victim to his genetic heritage when, in November 2011, both of his kidneys shut down. Every other day for 10 months, doctors siphoned 7 pints of blood out of his left arm and into a dialysis machine to perform the vital function his own kidneys could not: removing from the blood excess – and often toxic – byproducts of bodily functions like digestion.
For 10 months, his 50-year-old body produced no urine. And with would-be kidney recipients outnumbering donor kidneys roughly 7 to 1 nationwide, Fago’s chances of returning to normal anytime soon were slim at best.
“It could have been five years for me to get a kidney,” he said.
Then something remarkable happened: His younger sister Michelle stepped forward and pledged one of her kidneys. In August 2012, doctors tested the siblings for their renal compatibility and discovered that Michelle’s kidney was a perfect match.
“It was like getting one from a twin,” Mike Fago said.
Fast forward 10 months. On June 10, surgeons at Erie County Medical Center successfully performed the inter-sibling kidney transplant. Two months later, the difference for Mike was night and day.
And so, Mike’s family – the same family whose ill-fated gene pool dealt his kidneys such a lousy hand in the first place – wound up being his saving grace.
If that’s where this story ended, the Fago family kidney transplant would certainly be feel-good tale. But this story doesn’t end there. To fully appreciate how much the Fago family has gone through, and how lucky they are to have made it out intact, you have to rewind some 35 years.
Because the story of Mike and Michelle has happened before. All of it. The Fago family has had not one but two successful inter-sibling kidney transplants. That’s what makes this story incredible, and Mike knows it.
“I don’t know too many people that have gone through what our family’s gone through,” he said.
‘You’re turning green’
The Fago siblings are five in total: Donna, Mike, Kim, Nick and Michelle. Only 10 years separate the eldest sibling, Donna, who is 52, from Michelle, the “baby” of the family, and the siblings were a tight-knit bunch as a result.
The Fagos grew up in Williamsville. All five attended Williamsville East High School. Their father was an engineering contractor, while their mother worked in a department store.
Nick was about 12 when their seemingly average suburban life changed.
Nick, now 48, remembers the moment well. It was near the end of the school year, and he was in class, freezing cold in spite of the weather. He didn’t know it yet, but his body was sputtering to a halt.
Doctors had previously mentioned the possibility of kidney disease after an earlier, prolongued illness. Nick says he refused to believe it. But his willful ignorance was shattered that fateful day in class.
“In the middle of summer I’m wearing a down coat, and in class this girl looks over behind me and says, ‘You’re turning green.’ I get out of my chair, I call my mom, I say, ‘Mom, I’m ready.’ ”
The official diagnosis
Soon after, the Fagos received the official diagnosis: glomerulonephritis, a kidney disease characterized by crippling inflammation of the glomeruli, tiny blood vessels in the kidney.
It turned out that Nick’s kidneys had been slowly dying for months.
Like many kidney diseases, glomerulonephritis saps the kidneys of their functionality slowly but surely.
“Normally, if your kidney goes down, you don’t feel anything” at first, explained Dr. Mark Laftavi, surgical director at the Regional Center of Excellence for Transplantation and Kidney Care at Erie County Medical Center.
Individuals with the condition might notice a mild loss of appetite, dizziness or a change in daily urine output, but nothing serious enough to merit a trip to the doctor.
But when kidney function drops to 20 percent, things go downhill fast. Nausea. Total loss of appetite. A sudden drop in blood pressure. Dr. Laftavi said that Nick’s experience of turning green, while incredibly uncommon, could indeed result from a critical build-up of toxins in the blood.
Kidney disease was the eighth leading cause of death in the United States in 2010, with 50,476 deaths attributed to it, according to Centers for Disease Control and Prevention statistics published in May.
A childhood derailed
Nick went on dialysis immediately. Like his older brother Mike 30 years later, he sat in a hospital every other day while a machine filtered his blood. To this day, a series of raised lumps on his left arm mark the spot where doctors tied together arteries and veins to channel enough of his blood into the dialysis machine.
The experience of being on dialysis derailed Nick’s childhood. The way he describes it, Nick spent two Christmases and two birthdays at the hospital – first at Children’s, then at Buffalo General. Michelle, the youngest, kept him company while her parents worked. Though barely 10 years old at the time, she remembers Nick being the youngest patient in the hospital ward.
“We’d park in the back parking lot of the hospital and walk through the basement,” she said. “It seemed like a dungeon.”
Dialysis required Nick to maintain a strict cap on the amount of fluid he took in daily. Ice chips helped, but thirst was a constant.
His food choices were limited, too. Foods that absorbed fluid were avoided.
“I used to have turkey sandwiches all the time. I don’t eat turkey sandwiches anymore,” Nick said with a laugh only possible in retrospect.
A fault in the genes
Nick was a prisoner of more than just the dialysis center; he was being held captive by his genes.
His diagnosis came as a shock to the Fagos, so they did some digging and discovered that kidney disease had visited their family before.
“My parents, my grandmother, and everybody put a family tree together and figured out how and what was happening – why we were getting it, who had it,” Nick said.
Some 80 years prior, the Fagos learned, kidney disease killed the brother of Nick’s grandfather, who was about as old as Nick was when he was diagnosed. Back in the early 1900s, there was no known treatment for diseases of this kind.
Left untreated, Nick’s great-uncle is said to have swelled up with unfiltered blood until his bodily systems gave out.
Following Nick’s diagnosis, doctors screened the entire Fago family, searching for signs of the disease, but also to complete a more pressing task: finding Nick a new kidney.
Everyone is born with two kidneys, but one kidney can do the work of two, making live donation possible.
As it turned out, several members of the Fago family were compatible to a degree. The way Nick and Michelle remember it, everybody drew straws to decide who would be the donor.
But Kim, now 49, who was chosen to donate a kidney to Nick, said it was a decision based purely on compatibility.
She remembers her mother making the call but says that she never felt forced into doing it. Knowing what the disease was doing to her younger brother made it a no-brainer.
“I never had a bad feeling about it,” said Kim, who now lives in Alabama.
The transplant took place March 18, 1981. Nick was 16. At the time, renal surgery was in its infancy. The procedure took 12 hours, surgeons required an incision traveling from the stomach to the back to extract and insert the kidney, and the odds of a patient’s body accepting the new kidney were no better than 50-50. Even if the procedure went well, doctors expected Nick’s kidney to last only 10 years.
In spite of it all, Nick emerged from the operating room with a working kidney and a new lease on life.
Thirty-two years and three months later, Kim’s kidney hasn’t failed him yet.
“I’m a perfect example of living a normal life” thanks to an organ donation, he said.
Sister steps up
It must have felt like deja vu when, 30 years after Nick and Kim went under the knife, kidney disease again struck the family.
“I always knew that I had the chance,” Mike said. “I guess I’m lucky I made it to 50 without having to go through it earlier.”
Mike’s journey from diagnosis to transplant was more protracted than his brother’s. This time around, it was not immediately clear that a donor kidney would come from his family. And so for months, Mike sat on the national waiting list, which, according to statistics compiled by the Organ Procedure and Transplantation Network, was 96,686 hopefuls long earlier this month. In New York alone, 8,119 people await a kidney. Compare those numbers with the 13,042 kidneys that were removed from donors either dead or alive nationwide, and it’s painfully clear why a guy Mike’s age waits an average of 1,800 days, or nearly five years, to get a kidney.
Mike knows how lucky he is. Since his surgery, he has been living in a camper he owns at a secluded campground outside Lockport. The camper is his quiet retreat – just him; his dog Jessie, a 2-year-old boxer; and some friendly neighbors who offer to cut the grass every once in a while. He says the peace and quiet is helping to speed his recovery.
Living in this same campground is a fellow Mike knows who has been on dialysis for four years.
One campground. Two completely different ends of the kidney disease spectrum.
Mike knows if it hadn’t been for Michelle’s decision to donate, that fellow could have been him.
“I wouldn’t ask. It’s something I just wouldn’t – I don’t know, it’s kind of hard to explain,” Mike said. “But once she came to me and told me she wanted to do it, I just couldn’t believe it. It was very overwhelming. I still get choked up just thinking about it.”
The gift of life
The experience of having two brothers reduced to shells of themselves by kidney failure, only to be reborn thanks to donated kidneys, has given the Fagos an unusual perspective on the importance of organ donation, a message everyone interviewed for this story was quick to raise.
“I don’t think people realize what you can do for somebody else that’s going through, not only kidney failure but heart failure or whatever,” Mike said. “It gives somebody else a chance to maybe live a little bit of a normal life.”
Having seen the life-changing role an organ donor can play twice, once as a young girl and now as a mother of five, Michelle decided to take it a step further and become a medical professional. She recently completed nursing school with the goal of one day working in a dialysis center just like the “dungeons” that kept her brothers alive.
“That’s why I got into it in the first place,” she said.
“I think the most important thing that people have to realize is that you don’t have to have somebody who’s sick in order to donate, and you can donate to anybody,” Michelle said. Case in point: a man in Mike’s dialysis unit received a kidney from a 26-year-old girl who Mike says didn’t know anyone in renal failure but chose to give altruistically.
Added Kim, “I ask anybody to always be a donor on your license because it really could change somebody’s life forever.”