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Flood Sisters Foundation

How Organ Donations Save Lives: Local Transplant Survivors & Advocates Educate the Community

March 8, 2018 by Deborah Raider Notis

Amy Silverstein
COURTESY OF UJA WESTCHESTER
When Pleasantville resident Daniel Flood was 68 years old, he went into renal failure. He was sick, depressed, and looked jaundiced. Doctors told Daniel that he had six months to find a donor or he would have to go on dialysis for the rest of his life. At that moment, his three daughters, Jennifer, Cynthia and Heather, and their mother, Roseann made it their mission to do whatever they could to find a kidney donor for Daniel.

Amy Silverstein’s first heart gave out in 1988. She received her first transplant, the heart of a 13-year-old child, after spending two lonely months in the hospital. This heart, which was expected to last 10 years, gave her 25 more years of life.

When her second heart failed, she realistically did not expect to receive a second donor heart.

(L-R) Cynthia, Heather and Jennifer
COURTESY OF FLOOD SISTERS FOUNDATION

A Dire Need for Organ Donations

The American Transplant Foundation, an organization dedicated to helping people to find organ donors and providing emotional and financial support to transplant patients and donors, estimates that over 100,000 people in this country are on a waiting list for an organ transplant. Every 10 minutes another name is added to a transplant list. Both Daniel Flood and Amy Silverstein beat the odds.

When Flood was in his 60’s, he found out that he was born with one kidney. He developed hypertension, which eventually destroyed his one kidney. Neither his three daughters nor his wife were donor matches for him. His daughters decided to take an unorthodox route and posted for a kidney donor on Craigslist. “The Craigslist ad was a shot in the dark!” states his daughter, Jennifer Flood. “We used Craigslist for selling items, finding jobs, for childcare. It was a success for all these things, and we said why not post for a kidney donor in the volunteer section for dad?” The ad sparked the interest of an acquaintance who worked for the tri-state news radio station WCBS 880AM. She interviewed the Flood sisters, enabling a wider audience to hear their story.

Silverstein already outlived doctors’ expectations. After her first transplant, she was able to finish her third year of law school, marry her husband, Scott, raise her son, and live an active, fulfilling life. Yet, life with her donor heart was not carefree. She was often nauseous, had around 15 infections every year, underwent over 70 painful heart biopsies, took thousands of doses of medicines, and suffered from breast cancer caused by the anti-rejection drugs. “I didn’t stop,” says Silverstein. “I went to the gym and stood online at the grocery store, no matter how nauseous I felt that day. I kept going. I always tried to put on a good face.” In 2014, 26 years after she received that first donor heart, her heart failed. Encouraged by her family and friends, she travelled across the country to Cedars-Sinai Hospital in California and put herself back on the donor list.

The American Transplant Foundation estimates that liver and kidney disease kill more than 120,000 people every year. Twenty-six million Americans have kidney disease, and many do not even know it. Every year, there are approximately 6,000 living donations. Living donors can donate kidneys, while hearts are donated by someone who is brain dead but still on life support. A heart donor must be under 65 years old and cannot have a history of heart disease or trauma to the chest. As difficult as it is to receive a kidney, it is significantly harder to find a matching donor heart. To get on the donor list for a heart, candidates must adhere to a strict set of health-related rules.

After the Flood family’s radio interview, thousands of strangers, reached out to them. They were able to start a widespread campaign to find a matching donor for Daniel. They tracked potential donors via an Excel spreadsheet, personally speaking to every potential donor. Jennifer Flood, a nurse, knew that Daniel’s options were limited as he could only receive a kidney from a donor with an O blood type. After their review, the list dwindled down to six potential donors, three of whom were disqualified as a result of other medical issues. According to Jennifer, “The campaign was an emotional rollercoaster.”

Everything was different for Silverstein the second time her heart failed. In a hospital bed across the country, she had little hope that she would survive. Yet she was surrounded by much love and support, which helped her to persevere. Nine of Silverstein’s friends put together a schedule, and they took turns flying from New York to California to stay with Silverstein in her hospital room. Visitors were few and far between when she was 25. At 50, after her second heart failed, her friends did not leave her side. These friendships were “life-saving and illuminating,” according to Silverstein, who said that she realized the value and magnificence of her female friendships and spoke about them at a recent UJA event at Chappaqua’s Temple Beth El.

How the Organ Waitlist Works

According to the American Transplant Foundation, the waitlist for an organ transplant is not simply a numerical line. The waitlist encompasses a gigantic pool of patients, all of whom are characterized by their blood types, health needs, severity of the illness of the candidate, geographic location of the candidate and specific genetic characteristics. If a donor becomes available, matching features are entered into the system and a list of potential candidates, starting locally and possibly spreading nationally is developed.

Daniel Flood was extremely fortunate. An unknown woman from Monterey, California saw his daughters’ Craigslist ad in 2008 and offered to donate a kidney to Daniel. The donor empathized with the family’s situation, as she lost a close mother figure and was particularly close to her father.

In December 2009, Daniel received a new kidney. His family’s unconventional campaign to find a matching kidney donor was a success.

Two months into her stay at Cedars-Sinai Hospital, Silverstein was offered another heart. Once again, she matched with a 13-year-old girl, and this child would give Silverstein the invaluable gift of a longer life. “With this second transplant, I don’t know how long I have,” noted Silverstein, who travels back to California every six months to see her doctors. “But I know that whenever I need to talk to someone, I have nine friends I can call, and I will have an honest, free-flowing conversation. I have an incredible support system.”

Silverstein is particularly lucky. Many people in her situation do not have people on whom they can rely. Autumn Porter, a Senior Program Coordinator at The American Transplant Foundation, believes it is vital to create a network of support for transplant patients. The Foundation has a mentorship program to help both transplant candidates and donors. This program also gives people a platform through which transplant candidates can help find living donors and to get their stories out to a wider audience. These resources are designed to alleviate some of the stress of this process for transplant patients.

Complications from Immunosuppresive Drugs

Since his transplant, Daniel Flood feels significantly better and appreciates that he can enjoy his life and his family. Silverstein has been re-energized by her third heart, running three times a week. However, she knows that with a heart transplant “you are trading one disease for another.” She is grateful for the medical advances over the past 25 years. All transplant patients must take anti-rejection, or immunosuppressive drugs. These drugs block the immune system, helping to protect the new organ and help maximize its functionality. Long-term use of these drugs can lead to complications, including diabetes, high blood pressure and some cancers.

These vital anti-rejection drugs are often unbelievably expensive. Porter notes, “Many people cannot afford these protocols.” The American Transplant Foundation helps transplant patients to access these medicines. The Foundation’s “Patient Assistance Program” also offers financial help for donors, helping them to pay for their expenses.

Educating Others About Organ Donations

After helping their father, the Flood sisters wanted to use their newfound knowledge to help other people find living kidney donors. They started Flood Sisters Kidney Foundation and, thus far, have helped to match 11 other people with living donors. Leveraging social media and various media outlets, they share patients’ stories. “Every story is unique. I believe people are driven to help someone in need because they have seen someone close to them receive a transplant or go through setbacks in their lives, and they want to make a difference,” states Jennifer. The Flood sisters hope to enhance and expand their Foundation, incorporating an educational component and nutritional program. They also recently held a Bon Jovi acoustic concert at Tarrytown Music Hall earlier this month with part of the proceeds benefitting the Foundation.

Silverstein inspired millions with her story. In 2008, Silverstein wrote about her first heart transplant in Sick Girl. In 2017, she authored My Glory Was I Had Such Friends, the story of how the support of her friends was life-changing for her when her second heart failed. JJ Abrams plans to bring her latest story to television. “Appreciate when you feel well,” Silverstein says.

“And remember, even in my position, all good things are possible. Try not to be defined by it. It is very easy to get swallowed up by the illness that you have. I’ve been lucky not to become my illness and that is my hope for others.”

Filed Under: Armonk Cover Stories Tagged With: donor, donor heart, Flood Sisters Foundation, help, organ transplant, organ waitlist, survivors, transplant survivors

Dave Bickler Cites Flood Sisters “Fantastic Work” at November Music Charity Event

December 6, 2016 by Inside Press

Supporting Kidney Donor Awareness on Behalf of the Flood Sisters Foundation

By Grace Bennett

At a music cocktail charity event at Lexington Square Cafe on November 18th, the Flood Sisters proudly stated that they were celebrating “saving nine lives thus far.” Here are a few highlights from a successful evening that brought together so many supporters and friends:

  • Former lead singer, Dave Bickler of the band, Survivor, performed.
  • Armonk resident, singer and guitarist Corinna Shapiro performed acoustic on her ukulele.
  • Former Sopranos Actor Anthony J Ribustello spoke about his need for a kidney. Anthony also brought actor/director of the new show, Orange is the New Black, Nick Sandow to the event.
  • General raising of awareness for living kidney donation o the public in Westchester through music!

     (L-R) Cynthia Flood, Mona Bickler, Dave Bickler, Jennifer Flood and Heather Flood Photo by Allegra Samsen
    (L-R) Cynthia Flood, Dave Bickler, Jennifer Flood and Heather Flood Photo by Allegra Samsen

The evening’s sponsors included VIP Taxi, Colchis Capital, The Spiegel Family Foundation and the Inside Press. Our silent auction included gifts from DeCiccos, Emmary Spa, Equinox and East Hampton Point.

“My sisters and I focus on spreading awareness to the public on living kidney donation and kidney disease, and basically, on how someone can save a life,” said Jennifer Flood. “We provide matching services to those in need nationwide. Our future plans include going into the nearby schools and spreading awareness for kidney health.”

Dave Bickler said that he performed to support the Flood Sisters who “are doing fantastic work to help others in need.”

For more information or to support the Flood Sisters Foundation, visit www.floodsisters.org

 

bickler-sopranos
Also joining the Flood Sisters at the November 18 fundraiser: Former Sopranos Actor, Anthony J Ribustello (R),  and director of Orange is the New Black, Nick Sandow  Photo by Allegra Samsen
dave-bickler3
Chappaqua’s Dave Bickler performing to support the Flood Sisters Foundation’s work to raise kidney donor awareness. Photo by Leslie Regan

 

bickler-brunettenewbest
Armonk resident and singer/guitarist: Corinna Shapiro. Photo by Leslie Regan
flood-sister-speaker
 Chappaqua resident Katherine Whymark spoke about her experience as a living kidney donor. Photo by Allegra Samsen
bickler-brunette-hugging-jennifer
Jennifer Flood (right). Photo by Leslie Regan
bickler-me-and
Grace Bennett, publisher/editor, Inside Press, shares a laugh with Dave Bickler and his wife, Mona. Photo by Leslie Regan

 

 

 

Filed Under: Chappaqua Community, New Castle News Tagged With: Corrine Shpairo, Dave Bickler, Flood Sisters Foundation, Kidney Donors, Kidney Recipients, Kidney Transplant Awareness, Living Donors

Volunteer Opportunities Galore Presented at Youth Fair

December 1, 2016 by The Inside Press

During the second annual New Castle Youth Volunteer Opportunities Fair inside Chappaqua’s First Congregational Church in October, area families enjoyed a buffet lunch and a chance to explore a great number of volunteer opportunities in and around town. According to Rev. Dr. Martha Jacobson, the word of mouth since last year’s event helped grow the number of organizations represented. And as noted by the Youth Fair Planning Committee, “One of our young members mentioned that he was surprised that helping others makes him feel good…What surprises many youth is realizing that you are never too young to make a difference.”

PHOTOS BY GRACE BENNETT

Chappaqua Garden Club
Chappaqua Garden Club
Ossining Children’s Center
Ossining Children’s Center
Millwood Fire Department
Millwood Fire Department
Rev. Martha Jacobson (right)
Rev. Martha Jacobson (right)
Flood Sisters Kidney Foundation of America
The Flood Sisters and The Flood Sisters Foundation

Filed Under: Happenings Tagged With: Chappaqua Garden Club, first congregational church, Flood Sisters Foundation, Millwood Fire Department, New Castle Volunteer, Ossining Children's Center, volunteer, Voluteer Youth Fair

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