Paying it Forward: Connecting Lives to Save Lives
A former NFL running back. A father of two from Virginia. A farmer’s daughter from Iowa. A seven-year-old girl. A man from Wisconsin, and another from New Hampshire: Six lives, now forever entwined thanks to a special chain of kidney donations.
For ten years, Dennis Bligen, the former New York Jets running back, kept his health problems a secret. Through tests and treatments, weight gain and hair loss, the last thing he wanted was for his family to worry.
“They would always look at me like something was strange, but they didn’t force the issue too much,” he says with a laugh. “I never really filled them in on what was going on, mainly because my mother is a worrywart.” But while Dennis kept his game face, beneath he was scared.
The first signs that something might be wrong had become apparent during a summer league basketball game around 2002. As Dennis ran down the court, the former pro running back felt sluggish and heavy. He looked at his ankles: They were size of his thighs. The next day his doctor told him to go straight to the hospital. But that was the last thing Dennis wanted. He was coaching football at St. John’s University, his alma mater, while being involved with multiple community and business ventures. Besides, he still thought of himself as young and invincible. As he puts it: “Life was going on.”
But as his symptoms got worse, Dennis was forced to confront them. So began his ten-year odyssey of tests, misdiagnoses, and treatments for conditions he turned out not to have. In 2011, he finally saw a nephrologist who got the call right: focal segmental glomerulosclerosis (FSGS), a hereditary condition that leads to the formation of scar tissue in the kidney and, eventually, organ failure.
By that point, there was no way around it: Dennis needed a new kidney.
The Farmer’s Daughter from Iowa
When Jill Christensen’s flight touched down in New York City in 1989, she could never have imagined the way her life would become forever entwined with five others – Dennis’s included – 25 years later. That year, she was a newly minted University of Iowa grad, and after landing a plum job as an athletics trainer at St. John’s University in Queens she decided to leave the farms of her native Iowa behind for a chance to make it big in New York.
When Dennis – then just returning from five years in the NFL to coach at St. John’s – heard a farmer’s daughter from Iowa would be joining the staff, he imagined she’d be in over her head. Sure enough, there were times early on when Jill was seemingly lost. Dennis, a coach by instinct, took her under his wing.
“He kind of showed me the ropes,” says Jill. “We became dear friends.”
As Dennis’s health deteriorated over the subsequent years, Jill – like Dennis’s family – knew something was wrong. But Dennis remained stoic. Thus, when Dennis made a passing remark that he was going to need a new kidney, Jill was hardly surprised.
“I just knew that I’d get tested,” she says, thinking back to that conversation. It was the least she could do for her mentor and friend. “I’m a true believer that if it’s meant to be, it’s meant to be. So I put it in God’s hands and thought if it’s supposed to happen, it would,” she says.
But as fate would have it, Jill didn’t match.
The Father of Two from Virginia
Around the same time that Dennis was undergoing tests to be placed on the wait list for a kidney, 600 miles away in Virginia, John Detwiler got an email. It was from a colleague in New York whose seven-year-old daughter needed a new kidney. Born with a rare kidney disease, it would be her second. Her mother had already donated with 18 months of giving birth.
Though John had never met this man or his daughter, as the father of two young kids himself – a son and daughter – the message hit a chord. Seeing he was the right blood type for the little girl, he got tested. “What’s another kidney going to be worth to you? What are you giving up, and what is someone else going to be able to gain from it?” John recalls thinking at the time. “Someone else could be gaining years of life.”
When John learned that, although he would make an excellent donor, he wasn’t a suitable match, he remained undaunted. Doctors in Virginia asked him if he’d be willing to participate in a possible kidney swap – a chain of donations between people in need of kidneys who have willing donors who don’t match. Having come this far already, after talking it over with his family, John decided to say yes.
There was no way to know that around that same time, Jill Christensen had said the same thing to the same question herself in New York.
Kidney Swaps: Connecting Lives to Save Lives
Kidney swap chains are not easy to arrange. In addition to the dozens and sometimes hundreds of staff required for the screenings and eventual surgeries, computer data bases are often required to find strings of donors and patients throughout the country. And that’s the easy part. Finding willing and eligible donors remains the biggest challenge. Although the procedure today is extremely safe, it’s no small task for a person to put their work and life on hold – let alone to do so for someone they might not ever meet.
In a kidney swap, as the name implies, living donors give a kidney to help a friend or loved one indirectly. Because they’re willing to donate, but don’t match their desired recipient, they are connected with another donor-recipient pair in a similar situation. Each donor gives to the other donor’s intended recipient. In this way, both recipients get kidneys that match, and both donors see their loved one’s life spared.
Such chains can grow from four people to many. Moreover, considering the deceased donor kidneys made available for others on the wait list thanks to the swap process, the number of lives saved quickly multiplies.
The heroes in all this are the living donors who make it possible. But for Jill and John, that was the last thing on their minds. For them, it was just the right thing to do.
The Surgery: Friendships Formed and Solidified
The many moving pieces finally came together in August 2012. Two weeks after completing the screening, Jill received a call informing her that a recipient had been found. John by that point had been matched to Dennis, and another donor was found for the seven-year-old girl that inspired John to begin his quest initially.
While it’s normally rare for swap donors and recipients to meet, John, Dennis, and Jill all wound up in rooms next to each other at Mount Sinai. Within a day they were going between them, trading stories, talking about their families and telling jokes.
“I just remember laughing and talking about absolutely nothing,” says Dennis, recalling those days in the hospital fondly. “We were all just thrilled to be in that situation. You’d think I’d be the most thrilled. But you know, it seemed like those two were just as thrilled and happy to give an organ as I was to receive one.”
Dennis’s surgery, performed by RMTI Director Sander Florman, MD, went well, and his recovery was made easier by having Jill and John nearby to share in the experience.
The family of the little girl that John donated his kidney to save also came by. It was only the second time he’d met them. The first was on his way to the operating room.
“Dennis will tell me, ‘Oh, Jill, you’re so amazing,’” for doing this, Jill says. “But John is really amazing. … When he didn’t match the little girl, most people at that point would have said, ‘I’ve done my part.’ But not John – he continued into the swap program. He got into it for her, and he’d never even met her.”
If you ask John, he’ll say humbly that it’s no big deal. But he and the girl’s family continue to remain in touch, trading texts and Facebook messages often. The same is true for him and Dennis. They exchanged cards over the holidays and ‘Happy New Year’ texts on New Year’s Eve.
Paying it Forward: The Dennis Bligen Kidney Foundation
The morning after Dennis got out of the hospital, he was back on the field coaching football. “The kids thought it was cool. The parents thought I was crazy. Most of them were looking at me and shaking their heads,” says Dennis with a laugh. But he wasn’t about to put the experience behind him completely.
As Dennis had been readying for surgery, his family – who for so long had known something was wrong, but not known how to help – had begun making plans to form a new foundation in Dennis’s honor, as well as an inaugural gala to raise awareness and funds for kidney donation. “The original idea came from my siblings,” explains Dennis. “Not many of them could help as donors, so they were trying to find other ways to help.”
In November 2011, the family members had settled on the idea of a foundation and threw themselves into scheduling a walk-a-thon, seminars, workshops, lectures, and the gala. In addition to raising awareness of kidney disease in general, the program is also committed to raising awareness of kidney swaps. “Most people are amazed at how rampant chronic kidney disease is around the world,” says Dennis. In spite of this, “Most people I speak to have not heard of the swap program. I had never heard of it until I came to Mount Sinai. That’s critical – that’s crucial right there. If I hadn’t learned of it, I’d still be on the list right now.”
At the Dennis Bligen Kidney Foundation’s inaugural gala, Susan Lerner, MD, of Mount Sinai spoke of the reasons why swaps are not more common: “A lot of times people have a hard time giving to someone if they don’t know who it is. They look at it differently.”
Reflecting on that, Jill put it this way: “There are so many people in the world, there are so many people who can give. … You only need one kidney to live. A lot of people don’t understand that. I kind of just look at it like: God was bored that day so he threw two in.” She laughs.
As Dennis, Jill, and John move on with their lives, it’s a message they hope to carry forward.
For more information on the Dennis Bligen Kidney Foundation, visit the foundation’s Facebook page.