Mike Griffen of Victor donated a kidney through an exchange program involving several donors

VICTOR — When you see Mike Griffen behind the counter of his Main Street bakery in Victor, he looks like any other ordinary guy. But to one grateful kidney transplant recipient in Philadelphia, he’s a superhero.

Last November, following a serendipitous connection, serious discussion with family members, and a battery of medical tests for screening, Griffen successfully donated one of his healthy kidneys to a complete stranger — one he may never even meet.

This year he’ll lend his support in a different way, this time participating in the National Kidney Foundation’s Rochester Kidney Walk on Saturday, Oct. 4, at Frontier Field in Rochester. And to further ramp up in Victor, he and his wife, Amy, will be selling orange sugar “kidney cookies” from their Victor shop — The Griffen Bakery — from Saturday, Sept. 19 through mid-October, with profits going directly to the National Kidney Foundation.

“My goal is to increase awareness for what I went through — donating to a stranger, basically — making the paired exchange program more visible,” said Griffen.

 

Where the journey began 

The seed was planted last year when Griffen happened to stumble across a Facebook post by a “friend of a friend” who wrote on behalf of another friend who was in need of a kidney from a donor with a specific blood type. It listed a phone number people could call if they were interested in learning more. 

“I read it and couldn’t shake it,” said Griffen. “I couldn’t stop thinking about it. I told Amy, ‘something’s telling me I need to continue down this path.’”

The impulse didn’t fade, launching serious conversation and risk-weighing with his wife and children.

“Our kids are still relatively young, we’ve been relatively healthy,” he said. “I felt like this is how I could pay back and help other people with their story.”

Griffen credits Amy for giving him inspiration, and doesn’t believe the Facebook post would have made much of an impression on him, were it not for her.

“She’s very, very giving,” he said. “She’s trained me to be a better giver and better person since I’ve met her. She’s always thinking about someone else.”

 

How the paired exchange program works

“Basically, you have a willing donor who is not a direct match for you, but they’re a match for someone over here, and that person also has a willing donor who’s not a perfect match, but they might be a perfect match for you,” explained Griffen. “It’s a cross-match. We did that — and our cross-match was eight or nine people deep.”

The Victor baker’s paired exchange then triggered another one, which triggered another one, which triggered another one, and he couldn’t be happier.

“The paired exchange program, I believe, is giving people who need a kidney a transplant much faster,” said Griffen. “Because you’re not waiting for a direct match now. You’re going into a database of a bunch of people who have willing donors who aren’t a direct match, and if you match up with one of them, then they might be able to build a chain. And that’s what we did with Mount Sinai down in New York City.”

 

About the donation process

Dr. Jonathan Bress is chairman of the Medical Advisory Board for the Western New York Chapter of the National Kidney Foundation, as well as a nephrologist from Rochester Regional Health. He joined forces with the NKF because he “likes to give back to the community,” but also because of personal interest. Bress’ wife has polycystic kidney disease (PKD).

“There’s an illusion that you have to be a perfect match to be a donor,” said Bress. “In fact you have to be a compatible blood match and a healthy donor.”

A series of tests — MRIs, blood tests, full body scans — determine if a donor is eligible. Griffin’s “first go-round with Strong was about nine to ten months” before they said no. Then the process with Mount Sinai was six or seven months total, he said.

“It’s a lot, but it’s not any more painful than just getting blood taken, so the investment is in hours more than pain or anything,” said Griffen. “It’s a lot of time up front, but nothing that should be a deterrent for any willing participant or donor.”

The recipient’s insurance pays for “absolutely everything, so you pay for nothing,” Griffen said. Donors will front travel expenses for surgery, but lodging is typically covered by the transplant facility. The recipient’s family is allowed to offer traveling reimbursement, he said, but there’s no financial reimbursement allowed by law. Griffen and his family declined reimbursement for his travel.

“It wasn’t a drag — it was like a few blood tests here, and some basic stuff,” said Griffen.

Although there are no guarantees, Bress said donors do very, very well in the long run because they’re so carefully selected.

The person paired with Griffen got her kidney from somebody in Boston, with the transplant surgery at Mount Sinai. He went to Mount Sinai to donate, and his kidney went to somebody in Philadelphia. He still doesn’t know who received it. 

“I’m not trying to pat myself on the back,” said Griffen. “I want to increase the awareness that this is an opportunity that can be available. Maybe there’s someone else out there like me who’s willing to try it, and willing to do it.”

 

The payoff

“Patients who receive a kidney transplant live longer and better than those who are committed to dialysis in terms of length and quality of life,” said Bress. “Often dialysis is not an easy procedure — 12 hours a week, with four hours, three times a week. And dialysis is only a machine. It’s not a real kidney — it gives you nowhere near the blood cleansing that a kidney gives.”

Griffen found that out firsthand at Mount Sinai. The initial recipient of a kidney, not the person who received his, was still in the hospital when he had his donation surgery.

“A week after her transplant she was a completely different person,” he said. “She had energy. She was like a little firecracker. She was amazing — it was pretty awesome to see how someone who was on dialysis for three days a week, the moment that they get the new kidney, they are immediately healthy again. That thing starts working right then.”

Ultimately, six people in Griffen’s chain benefitted — six received kidneys because he donated and started the chain.

“In my opinion those chains never end,” said Griffen. “Maybe our block ended, but in essence the last person in my chain actually started a new chain so really they never end. It’s a good process.”

This Saturday, orange sugar “kidney cookies” will be on the counter at The Griffen Bakery, a reminder to all about the gift that truly keeps on giving. Cookies will be $1 each, packaged in six-pack sleeves, and almost all of that will go to the kidney foundation — about 90 percent, Griffen said. The rest covers the cost of ingredients.

Then on Oct. 4, the community is invited to Frontier Field.

“Our Kidney Walk is our most important fundraiser,” said National Kidney Foundation Executive Director Ellen Scalzo. “It raises both revenue and awareness about kidney disease in our own community. Typically we have over 600 attendees at the Kidney Walk, which includes kidney recipients, patients, healthcare professionals, families and friends. There’s a great sense of camaraderie at this event, which is scheduled for Sunday, Oct. 4 at Frontier Field.”

As for her husband’s altruistic donation, Amy Griffen said she “just had a good feeling about it.”

“Why’d we do this? Because we can,” said Mike Griffen. “Most healthy people don’t need two kidneys. You may know someone who’s on dialysis, and you may not be a direct match, but if you’re a willing donor, there are programs out there to take on a non-match donor to match someone else across the country.

“My encouragement to potential donors would be, if you want to save someone’s life, be a hero. Be someone’s hero.”

 

IF YOU GO: Kidney Walk

WHAT The Rochester Kidney Walk, a non-competitive 5k community-building event. Each year, more than 600 individuals join dialysis patients, transplant recipients, living donors and the general public to celebrate life while participating in an inspiring, community-based event.

WHEN Sunday, Oct. 4 — registration starts at 10 a.m., walk is at 11 a.m.

WHERE Frontier Field, 333 Plymouth Ave. N., Rochester 

INFO Register at KidneyWalk.org to form a team or walk as an individual; for more information, contact event manager Jessica Cipolla at jessica.cipolla@kidney.org or (585) 598-3963 Ext. 30

 

IF YOU GO: The Griffen Bakery

WHAT Sale of orange sugar "kidney cookies" to benefit National Kidney Foundation 

WHEN Saturday, Sept. 19 through mid-October

WHERE The Griffen Bakery, 23-A E. Main St. in Victor

COST $1 per cookie, available in six-cookie sleeves

INFO Visit www.facebook.com/TheGriffenBakery or call (585) 398-7936

 

DID YOU KNOW?

— Each day 13 people die waiting for a kidney.

— 1 in 3 adults in America are at risk for kidney disease.

— 1 in 9 adults in America have kidney disease, and most don't know it.

— About 6,516,254 adults in New York are at risk for kidney disease.

— About 2,193,805 adults in New York have kidney disease, and most don't know it.

— 118,000 people in America are on the waiting list for a lifesaving organ transplant.

— More than 96,000 people in America need a kidney.

— Fewer than 17,000 people receive a transplant each year.

— 1,197 kidney transplants were performed in New York in 2014.

— 510 of the 1,197 kidney transplants were from living donors.

— 687 of the 1,197 kidney transplants were from deceased donors. 

— 10,124 in New York are waiting for organs.

— 8,421 of the 10,124 are waiting for kidneys.

— High blood pressure and diabetes are the two leading causes of kidney disease.

— Other risk factors include a family history of kidney failure or being age 60 or older. 

 

ABOUT the 2015 Kidney Walks across the nation 

The Kidney Walk is the nation's largest walk to fight kidney disease. Held in nearly 100 communities, the event involves 75,000 walkers, 5,400 teams and 3,500 volunteers, and raises awareness and funds lifesaving programs that educate and support patients, their families and those at risk. By supporting the National Kidney Foundation, you directly influence and positively impact the lives of those at risk for kidney disease, those living with chronic kidney disease, and those who care for and about them.

 

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