Where kidney transplants are a family heritage
She’s 48 and perfectly healthy. She’s the mother of two twentysomethings who are more than a bit nervous about the operation their mother has volunteered to undergo this week.
Erin Brunelle, an administrator for four recycling firms in the Northeast, will drink a bottle of citrate of magnesium just after 4 p.m. on Monday. Before dawn on Tuesday, she’ll arrive on the doorsteps of Massachusetts General Hospital.
Just before sunrise, she’ll be wheeled into a surgical suite to help save the life of a man who knows full well that he’ll never be able to repay her.
“It’s amazing,’’ Don Burl III, 46, told me the other day. “You don’t think in this world today with all the hate there is that there are still good people out there. I’m the kind of person who doesn’t like anybody to do anything for me. It’s difficult for me.
“She’s an angel. That’s all I can say.’’
Part of Burl’s extended family, Erin Brunelle is — indirectly — donating one of her kidneys to Don Burl.
This is a remarkable story, about family allegiance, about selfless medical heroism, about a disease called Alport syndrome that affects 1 in 50,000 children, impairing their hearing and their eyesight and — almost always — sending blood into their urine.
That’s what Don Burl saw when he was 17. The kid who had grown up in Burlington. The kid who played street hockey until the street lights came on. The kid who could throw a strike from centerfield to home plate. The kid whose kidneys were failing, leaving him increasingly weak. And scared.
“He was tired all the time because his kidneys weren’t working,’’ said his father, Don Burl Jr. “I gave him a kidney. But it didn’t work.’’
No, the father’s intended gift of life to his son lasted exactly one day. Two years later, a transplant from a cadaver also failed after about a year.
In 1994, Don Burl received his third kidney, from his brother Chris, two years younger and a perfect match.
“The only time I was scared was when they put me on that damn gurney to wheel me down to the prep room,’’ said Chris Burl, 44. “That’s when it hit me like — whoa! — this is going to happen.’’
Don Burl told his younger brother to stop and to think about it. His message? You don’t have to do this. You’re not forced to do this.
But his brother never questioned his decision. He never hesitated.
After the transplant surgery, he recalls being disoriented when the doctor called his name.
“I didn’t know where I was,’’ Chris Burl said. “The doctor said, ‘Look, there’s your brother.’ He’s giving me the thumbs up and he looks like he’s ready to run a marathon. I felt like I got hit by a truck. That right there is when I knew it was all worthwhile.’’
Chris Burl’s anatomical gift to his brother in 1994 gave Don Burl his life back — for more than two decades. He built a career and a family. He has run out of ways to thank those who have helped extend his life.
And now, on the eve of his fourth transplant, he’s overcome with gratitude again.
The other day in a conference room at MGH, he sat next to Erin Brunelle and struggled anew how to fully recognize her generosity, her selfless gift — a gift that once again will extend his life.
“I’ll never be able to thank her for what she’s doing,’’ he said. “I just don’t know what to say about that. She’s an unbelievable person.’’
She’s the newest member of a remarkable constellation of donors and recipients in the Burl family, whose medical journey led them to adopt an unusual team name for the National Kidney Foundation’s annual community fund-raising walk in October: The One Kidney Wonders.
There’s Don Burl on the precipice of his fourth transplant. There’s Christopher Cassidy, Don’s nephew, who received his first kidney transplant in 2016.
“I would wake up and feel sick and have to vomit,’’ said Chris Cassidy, who was diagnosed with Alport syndrome, a genetic condition, at age 2. “I would feel better. Then I would get dizzy and tired.’’
That’s where Melissa Cohen steps into the picture. She’s a nurse at MGH. She’s Don’s wife’s sister. And she’s the woman who donated a kidney to 23-year-old Chris three years ago.
“I’m so happy that I could help him and make him feel better,’’ she said. “It really does make me feel good to make him feel better. I’m so thankful that I got to know this family and they’re part of my life.’’
You need a chart of the family tree to keep it all straight. The bottom line is selflessness. And anatomical generosity. And love.
“This is unusual,’’ said Dr. Nahel Elias, MGH’s surgical director of renal transplantation. “This is not the most common thing we see.’’
It turns out that the doctor, who over the past 16 years has done about 600 of these transplants, is not only a medical wizard but a master of understatement.
“The one piece about living donation that is very different from anything else is that living donors are not patients,’’ Elias told me. “They’re healthy people. But we have to operate on them. I tell them that we’re making them patients.’’
There are now some 100,000 people awaiting kidney transplants in the United States. And that number is growing. Why? More diabetes. Earlier diagnoses. It used to be that transplants on 70- or 80-year-olds were unheard of. Not anymore.
As Erin Brunelle and Don Burl sat next to him in that MGH conference room the other day, the transplant surgical director explained what is about to happen.
It’s called a paired exchange. Erin, part of Burl’s extended family, will donate her kidney to a patient whose intended donor was not a match. Don will get a kidney from another donor in exchange for Erin’s gift.
“I’ve been part of this family for a very long time and I would like to help this family,’’ Erin told me.
In other words, it’s like a kidney bank in which Erin makes a deposit and Don gets to make a withdrawal.
“This is great altruism,’’ the doctor said. “You have a person coming forward and volunteering to undergo an operation they do not need. Pretty much every time we do an operation we do it because the patient needs it — because their other options were worse.
“Erin’s other option is not worse for her. It’s worse for somebody else. We look at living donors with great appreciation. Essentially, I cannot do transplants if there are no donors. Donors are the cornerstone of what I do.’’
As Erin Brunelle listened, Elias said it’s “extremely uncommon’’ for a kidney donor to need one in the future. If that were to happen, Erin would shoot to the top of the list.
“We want to make sure that the donor has as little risk as possible,’’ Elias said. “We’ll never make it zero. When we’re looking at young donors, they’re healthy. Donors live long. They can live into their 80s and 90s. You’re talking about how long am I able to predict. We’re good but nobody’s perfect. Our job is to make sure that her risk is as little as possible.’’
With that Don Burl made a joke, offering Erin gummy bears or Swedish fish for the miracle she’s now ready to make happen.
His genuine gratitude was made plain in the way he looked at her.
“All I ever hear is, ‘I don’t know how I can ever repay you,’ ’’ said Brunelle, who works at ReEnergy Recycling in Salem, N.H. “I don’t like that.
“It’s not something that I expect thanks for. Most donors, I think we feel: I’m grateful that I’m able to do it.’’
When he receives his fourth kidney transplant this month, Don Burl will doubtlessly have deeply heartfelt words of gratitude for his donor.
Whether she likes it or not.