As Windsor Man Waits for Kidney Donor Match, Life Goes On

  • Greg Poulton, foreground, and Niles Farnham remove carpet glue from the concrete floor at Salt hill Pub in Hanover, N.H., on December 26, 2016, before a new vinyl plank floor is installed. Farnham, 22, of Windsor, Vt., is in need of a kidney donor due to a genetic condition that prevents his kidneys from functioning normally. He started the job about four months ago after moving to the area for medical treatment. (Valley News - Geoff Hansen) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Niles Farnham, 22, of Windsor, Vt., is in need of a kidney donor due to a genetic condition that prevents his kidneys from functioning normally. (Valley News - Geoff Hansen) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

Valley News Staff Writer
Monday, December 26, 2016

Windsor — The life of Niles Farnham, 22, is changing all the time.

A month ago, a girl from Enfield agreed to be his girlfriend. A week ago, the doctors told him he needed an organ transplant, and quickly. A few days ago, he spent Christmas Eve at his brother’s house in Poultney, Vt. On Monday, he was back to work ripping up carpet for Biron’s Flooring in Newport.

His favorite video game is Warframe, in which a race of aliens wake from a centuries-long sleep to defend themselves from different aliens. His kidneys are failing. So he can’t eat ice cream, cheese, peanut butter, ham, chocolate or baked potatoes.

He hopes someone will donate a kidney to him before he needs dialysis.

He’s got a whole life he’d like to get back to.

“I’m just doing everything I can do and try to hope for the best,” Farnham said.

This week, he has two appointments. The first is a ride-a-long with a police officer in Hartford. He’d like to become a police officer himself. The second is at Dartmouth-Hitchcock Medical Center, where staff will map his veins for a fistula, in case he needs dialysis.

“His time pressure is, he needs a kidney right now,” said Farnham’s stepmother, Jessie Farnham, who works for Frazer Agency, an insurance company in Windsor. “He is definitely in stage 5 renal failure.”

Farnham was born with a genetic disease called Alport Syndrome, which affects one in 50,000 newborns. It’s characterized by a loss of hearing and eyesight and, at some point early in life, the complete failure of the kidneys. When it occurs, routine dialysis treatments or a new set of kidneys are needed to stay alive.

Everyone with Alport Syndrome needs a new kidney at some point, and at 22, Farnham has lasted longer than most people, in part, he said, because he’s tried to live a healthy and active lifestyle. But earlier this month, during a blood test, doctors saw a dramatic increase in his levels of creatinine, a chemical waste product that is filtered out of the bloodstream by healthy kidneys.

It was the second such spike this year, and it drove the doctors into action.

“It’s kind of a high alert now,” said Farnham.

Last week, he said, he got a phone call from a Dartmouth staff member who told him he had been successfully placed on the waiting list for a kidney.

“I said ‘Awesome,’ ” he said during a phone interview Friday. “It’s kind of a relief.”

But Farnham is not alone in needing a kidney transplant. He’s now officially one of about 100,000 people in the United States awaiting kidney transplants, with a median wait time of 3.6 years, according to the National Kidney Foundation.

In 2014, more than 8,000 people on the list either died while waiting for a kidney transplant, or became too sick to receive one.

Farnham has blood type O, which means he needs a donor with blood type O. The Farnham family has identified a friend who might be a match, but it will take weeks or months before lab tests and other screening processes play out, so they want to line up multiple candidates.

His stepmother asked that those interested in donating call Cathy Pratt, a donation coordinator at DHMC, at 603-653-3931, or visit www.dartmouth-hitchcock.org/transplantation/living_donation.html.

Farnham said Alport Syndrome has been an obstacle he’s worked against his entire life. When he was just six years old, he said, a significant loss of hearing led to tests that revealed his rare condition.

“That made school pretty hard. I wasn’t up with everyone else,” he said. “Once we figured that out, I started seeing a doctor about every six months.”

He’s had to watch his diet carefully for the things that his kidneys can’t process, a list that includes sodium, potassium and phosphates. When he was a freshman in high school in western Massachusetts, physical education teachers introduced him to weightlifting, and he took to it right away.

“I just wanted to be in good shape. I knew I already had some health problems,” he said. “Being overweight or unfit wasn’t going to help at all.”

Over the next few years, he began hitting the gym multiple times a week, focusing on his maximum bench press, which began at about 145 pounds.

As his strength increased, he began feeling healthier. He played baseball and other sports. After graduating high school, he landed a job working for New England Truck Tire, which sent him out on a constant stream of calls to wrestle massive truck tires off of and onto 18-wheelers.

“Sometimes after you get the lug nuts off you have to beat it with a hammer to get it off the truck, because it’s been on there so long,” he said.

Some of the tires weighed 200 pounds. The worst were ones for farming and construction equipment.

“Some of the tires were actually as tall as me,” said Farnham, who stands 6 feet, 2 inches.

But Farnham liked the work. He did the calls by himself, sometimes a dozen or more a day. Then he would go work out. His maximum bench press had increased significantly, but he found it increasingly difficult to balance his dietary restrictions with his caloric needs, and what he was hearing he needed to do to build his muscle mass.

“Getting all the nutrients and the proteins and everything, eating is hard.” he said. “You’re supposed to eat six meals a day. It’s expensive. Chicken and meat and stuff is pretty expensive.”

So, even though he knew they contained some of the food components that gave his kidneys problems, he began taking nutritional supplements.

“I would take a protein shake twice a day and it makes it easier,” he said. “I did that for probably three months.

Earlier this year, he began bench pressing 225 pounds, an all-time high. He also saw what he now thinks is a related development — his creatinine levels, which he had managed to keep in check for so many years, spiked.

“It probably wasn’t the best idea,” he said.

Though there’s no way to know for sure whether the protein shakes contributed to the timing of his kidney failure, what he does know for sure is that his once-prodigious energy is gone. He used to lift tires all day and then go hit the gym. Now, when he’s finished ripping up a carpet, he can barely muster the strength to hit the shower.

Now, Farnham said, he’s just taking it one day at a time. A date with his girlfriend. Monitoring his creatinine levels. A day of flooring. Avoiding the pizza. Eating the vegetables. And carrying around a pager that could begin beeping at any moment, telling him it’s time to rush to Dartmouth Hitchcock for surgery.

He’s not waiting for the pager to go off, he said.

He’s living.

“I try not to think about it,” he said, “and just keep on, keeping on.”

Matt Hongoltz-Hetling can be reached at mhonghet@vnews.com or 603-727-3211.