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Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on October 24, 2011, 11:37:05 PM
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Former NY Mets general manager Jim Duquette's brave girl battles rare kidney disease
BY WAYNE COFFEY
DAILY NEWS SPORTS WRITER
Originally Published:Saturday, October 22nd 2011, 7:05 PM
Updated: Saturday, October 22nd 2011, 7:05 PM
Despite having to be connected to a dialysis machine twice a day, Lindsey Duquette daughter of former Mets GM Jim Duquette can still feel like a normal 9-year-old with her mom Pam in their Maryland home.
SPARKS, Md. - Lindsey Duquette doesn't have her own baseball card. Not many 9-year-olds do - even ones with a father who makes his living in the game. But if Lindsey Duquette did have a card, the numbers on the back would tell her story. Would they ever tell her story, not with Lindsey's resilience or sense of humor, but with the cold, hard currency of fact.
The card would list her 60 hospital visits and her two dozen emergency-room trips, of course. It would run down her hundreds of dialysis treatments and her surgeries and the 24 medications she was once taking, to say nothing of five years of steroid treatments that left her body hotter than a lava pit, and as blown up as a Thanksgiving Day float character.
In the 2011 season, it would list the removal of her kidneys after Lindsey went into end-stage renal failure in the spring.
The card would run out of space before it could fully itemize the unspeakable misfortune that Lindsey Duquette has endured over the last seven years. It wouldn't even try to chronicle the heartache that Lindsey's parents, Jim and Pam Duquette, have been through, getting emotionally body-slammed by Lindsey's disease, Focal Segmental Glomerulosclerosis (FSGS), a devastating and potentially deadly kidney condition that has no known cure.
Lindsey looks and feels better than she has in years now, but if the Duquettes have learned anything, it's that FSGS and the broader group of disorders known as Nephrotic Syndrome are wickedly unpredictable, leaving little room for long-term hope, or piece of mind - at least until a cure is found.
"It's been an honest-to-goodness nightmare, and anyone who has gone through it will tell you the same," Pam Duquette says.
Jim Duquette, a career baseball man, wishes he could disagree, but how can he? He is driving through the hills northwest of Baltimore, heading to catch an Amtrak train for New York. Seven years removed from his brief tenure as the general manager of the New York Mets, Duquette works as an analyst for the MLB Network and MLB.com and also has a show with Kevin Kennedy on Sirius Radio. Around the big city, Duquette still gets vilified for a trade that sent Scott Kazmir to Tampa and brought Victor Zambrano to the Mets.
A few hours after greeting a delivery man who needs a hydraulic dolly to haul some 20 cartons of 300-millileter dialysis bags upstairs to sustain Lindsey through another month, and minutes after kissing Lindsey goodbye, Duquette manages a faint smile at the mention of a seven-year-old baseball transaction.
"Please get over it," he says. "I got over it a long time ago. In the end, none of that stuff really matters. In professional sports, you make trades, good ones and bad ones, and livelihoods are at stake. Of course you want to do your job well and win. (But) it's a whole different stress level when you are talking about the life and death of your daughter."
* * *
For Lindsey Duquette and her parents, life changed forever at a ballpark. The Mets' ballpark. It was Aug. 27, 2004. Jim and Pam were celebrating their 10th wedding anniversary in a suite in Shea Stadium. Tom Glavine was pitching against the Dodgers. The three Duquette children - Lauren, Matthew and Lindsey, then 2½ - were all in attendance. Before the game, Pam noticed that Lindsey's ankles and feet were swollen. Lindsey also seemed lethargic and kept wanting to eat ice chips.
Lindsey was by all appearances a perfectly healthy girl, but Pam's intuition told her something wasn't right. David Cohen, the Mets' general counsel, was in the suite, and mentioned that his wife, Erika, was a pediatrician and he'd get her on the phone if it would help. When Erika Cohen heard the child's symptoms, she thought they were consistent with Minimal Change Disease, a kidney disorder that falls under the heading of Nephrotic Syndrome.
"I don't mean to alarm you, but I would get your daughter to the hospital immediately," Dr. Cohen told Pam.
Lindsey was rushed to Flushing Hospital. Her heart rate was 212. Her bloodwork showed massive protein deficiencies. Erika Cohen's phone diagnosis was, regrettably, and utterly, on target: Lindsey Duquette's kidneys were in a sieve-like state, damage to tiny filters called glomeruli allowing protein to spill into her urine, leaving her blood-protein alarmingly low, causing swelling and putting Lindsey at risk of going into shock.
Later that night, Lindsey was transferred to Montefiore Medical Center in the Bronx, where she got megadoses of steroids for five days in an effort to control a possible immune-system response that would exacerabate her condition.
In short order, Lindsey was gravely ill, and the Duquette family nightmare was on, their youngest child winding up in the pediatric intensive care unit for three days with peritonitis, a life-threatening inflammation of the membrane lining the abdomen - a common side affect of Nephrotic Syndrome.
Lindsey would spend the next 76 days - from Sept. 21 to Thanksgiving Day - in Montefiore, her body under siege. Breathing difficulties put her on a respirator for a time. She had blood clots, high blood pressure, dangerously high cholesterol levels.
"It was one thing after another. It was petrifying," says Pam, who stayed with Lindsey while Jim cared for the older children, and shuttled between Shea and Montefiore. The Mets' 71-win season under Art Howe didn't seem such a big deal anymore.
One day Duquette heard a Met veteran complaining about needing to get a single blood sample drawn.
"Are you kidding me?" he thought. "I have a 2-year-old in the hospital hooked up to all kinds of machines, fighting for her life, and you're complaining about a pin prick?"
Jim Duquette would get fired and replaced by Omar Minaya, a turn of events he couldn't afford to worry about.
"I'm not too big on divine intervention, but there were larger forces at work in (the firing)," says Duquette, who is now on the board of the NephCure Foundation, an organization committed to supporting research to find a cure for Nephrotic Syndrome and FSGS, the second-leading cause of kidney failure in children - and the same disease that has afflicted Alonzo Mourning and Ed Hearn, the former Mets catcher. "It would've been impossible to do the job right and be there for my daughter and my family."
In 2006, Jim got a job as a VP with the Orioles and the Duquettes moved to Maryland, Lindsey's treatment shifting to Johns Hopkins Children Center. The family kept hoping that Lindsey would be one of the 90% of children with Minimal Change Disease who outgrow it, and resume normal kidney function. But Lindsey Duquette is one of the 10% who do not, and was officially diagnosed with FSGS in 2008, her life becoming an endless debilitating whirl of protein infusions and steroid blasts and chemotherapy - the treatments throttled back only when her blood-protein levels were normalized.
The regimens kept Lindsey alive, but her side affects were horrific, the steroids leading to massive water retention and weight gain (Lindsey once added 18 pounds in three days), as well as internal overheating that left her cheeks flaming crimson and her body feeling as if it was on fire.
As if this wasn't enough, the steroids also induced a calcium deficiency that weakened her bones so much that Lindsey couldn't walk up stairs, and made her eyebrows thick and her hair brittle.
Through it all, Lindsey never complained, except one day when she was 6. She looked at her mother with sorrowful eyes.
"I just want to be a kid," Lindsey said.
Says Pam, "Nobody could help her. Nobody."
Jim and Pam Duquette aren't just in awe of their daughter's toughness, but her desire to stay connected with people, and her upbeat attitude. During the Mitchell Report hearings on steroid use in baseball, Lindsey kept hearing about drugs in baseball and said to her father, "Are those guys taking the same steroids that I am?"
Last month, Lindsey and her friends in Girl Scouts were talking excitedly about an upcoming cupcake-decorating party, and one of the girls said, "I am so excited I think I'm going to pee in my pants."
To which Lindsey said, "I am so excited, but I can't pee in my pants."
Pam Duquette pauses. Her eyes well up. She talks about the agonizing uncertainty surrounding FSGS, living in fear of all that the doctors don't know, of making a wrong decision, of how hard it was to put their daughter on an experimental drug that listed instant fatality as a possible repercussion. The goal from the start was always "the gift of time," Pam says, sustaining Lindsey long enough for either the disease to go away on its own, or a cure to be discovered.
"We kept hoping to find the right cocktail of immune suppressants and chemotherapy that would be the magical (remedy)," Pam Duquette says. "We never found it."
* * *
Lindsey Duquette's bedroom is a happy-looking place. There's a furry pink blanket, pillows shaped like animals and big bright lollipop facsimiles on the wall, along with a multiplication table.
"Math is my favorite subject," Lindsey says. In the corner is a tidy stack of plastic drawers containing medical supplies, and the dialysis machine that Lindsey gets hooked up to twice a day, including 11 hours at night, undergoing treatments that cleanse her blood, carry away toxins and keep her peritoneal membrane healthy.
For more than six years, Pam Duquette was determined to save her daughter's disease-ravaged kidneys. The medical literature says that if you can survive to age 8 the odds rise dramatically for outgrowing the disease. That no longer became an option last April. Lindsey had no appetite and no energy, and her blood-protein levels plummeted.
Every day she felt worse, and the lab confirmed the worst: she had entered end-state renal failure. At a NephCure fund-raising dinner - an event at which Jim and Lindsey were the featured guests - an enfeebled Lindsey got sick in the back and then joined her father at the dais.
"Enough is enough," Jim said. "She can't live like this anymore. The kidneys have to come out."
They came out in May, and Lindsey has been stable and reasonably healthy since living on dialysis machines. "I feel much better," she says. "I don't need ice packs anymore, and I get to go to school and be with my friends." You ask her about her favorite things and her dreams, and she talks about school and her friends, and about Ellen DeGeneres and dolphins.
She's loved Ellen and dolphins for years.
"It would be amazing to go swimming with dolphins, and have Ellen swim with me, too," Lindsey says, smiling.
Lindsey Duquette is 4-foot-1 and 60 pounds, at the bottom of the growth charts for her age. She has started taking growth hormone, which has become the latest fight for the Duquettes, because their insurer, United Healthcare, is declining to cover it, saying that it is not medically necessary. Lindsey is supposed to get a transplanted kidney next spring at Hopkins, though United wants her to go to an in-network facility, and keeps sending form letters to Lindsey informing her of this.
"Nothing has ever been normal, with any of this," Jim Duquette says.
The best hope is for the transplant to take, and for Lindsey not to be one of the FSGS patients to have the disease attack the new kidney. Nobody wants to think about that. Lindsey Duquette and her parents would much rather think about a wondrously happy bottom line on her baseball card, with her disease and her ordeal receding fast, and a future full of school and friends and health and maybe even dolphins and Ellen.
Sitting on her bed, on her pink, furry blanket as she gets a dialysis treatment, Lindsey is asked what she would say to someone who is diagnosed with FSGS.
She looks toward her multiplication table, and doesn't hesitate.
"Try your hardest to be brave," she says.
Death of good friend Mike Flanagan tears at Duquette
Jim Duquette won't soon forget the spring and summer of 2011. It began with his 9-year-old daughter, Lindsey, going into end-stage renal failure and having her kidneys removed.
It ended with Mike Flanagan, one of his closest friends in baseball, committing suicide with a gunshot to his face in the woods behind his home in suburban Baltimore - not even a mile from where the Duquettes live.
"It was a long, tough, emotional summer," says Duquette, who worked side-by-side with Flanagan in 2006 and 2007, co-VPs with the Orioles aiming to restore luster to a reeling the franchise.
As wrenching as Lindsey's seven-year ordeal with the kidney disease FSGS has been, Duquette was devastated by the sudden, self-inflicted death of Flanagan, 59, the 1979 AL Cy Young winner and member of the 1983 championship team. Duquette had spoken with Flanagan the night before, on Aug. 23.
An Orioles broadcaster, Flanagan, long known for his puns and sharp sense of humor (when a former Blue Jays teammate and one-time Yankee, Tony Solaita, left to play in Japan, Flanagan called him "Tony Obsalaita), was said to be under financial strain, and had a hard time getting beyond the criticisms he suffered in his time running the Orioles.
Duquette had plans to see Flanagan over that weekend, when the Yankees were in town at Camden Yards.
"I had no inkling at all," Duquette said. "When you have a friend going through difficult times, you want to think you can help them through it. This was much than even I knew. He just kept everything bottled up inside."
http://www.nydailynews.com/sports/baseball/mets/2011/10/22/2011-10-22_former_ny_mets_general_manager_jim_duquettes_brave_girl_battles_rare_kidney_dise.html