Mom, daughter share story of kidney transplant - Essex, MA

ROCKPORT - Rachel Douyard is hardly one to let life pass her by.
The 24-year-old Rockport resident talks animatedly about photography, walking her Australian Shepherd, Sumo, and squeezing in the last days of riding her horse, Rainbow, along Gloucester beaches before mid-May. Skydiving is next on her agenda, maybe within “a year or two.”
All this from a woman who underwent a kidney transplant, donated by her 47-year-old mother Mary Douyard, less than two months ago.
“You have to be happy about the circumstances you’re in,” said Rachel, who has deftly shuffled her life around her kidney disease since she was 13 years old.
For more than a decade, the Douyard family made regular pilgrimages to Boston’s Children’s Hospital for Rachel’s dialysis three times a week. The kidney transplant between mother and daughter put an end to dialysis and has linked the two at an – ahem – visceral level.
On an unseasonably warm Wednesday, Mary and Rachel sat in the Stoffa Gallery, originally opened in Rockport in 1964 by Mary’s late stepfather, renowned artist Michael Stoffa. The constant rumble and hum of construction on the new Shalin Liu Performance Center filtered through the walls. The pair joked that the nearby hubbub had set gallery paintings atilt.
The Douyards flashed broad smiles and shared laughs as they retold how they had become the “bookends” for Mary’s kidneys.
On July 1, 1998, the Douyard family was boarding a plane from South Korea, where Mary’s husband William was stationed in the U.S. Army, to Boston for a couple months of vacation. Mysteriously, Rachel felt sick the entire flight.
While some people dismissed her complaints as mere teenage drama, Rachel knew she had been tired and had joint pain for several months.
“Everything just came to a head,” Rachel said. “Definitely something was going on.”
Once on United States soil, Rachel was examined b y doctors at the air base and told to go home and wait for results. The Douyards received a call later that day telling them to take Rachel to Children’s Hospital immediately.
Seven days and more than a dozen tests later, Rachel knew the name of her illness: P-ANCA. The kidney disease is extremely rare, affecting one in a million people, and usually found in young adolescent girls. P-ANCA attacks the organs and joints, advances rapidly and can cause kidney failure if not immediately addressed.
For four months, Rachel underwent a series of treatments intended to knock the P-ANCA into submission. The strong drugs, used typically for treating cancer, worked.
“It’s never presented its nasty head again,” Mary said of her daughter’s P-ANCA.
Rachel’s battle with kidney disease did not end there. Since 1998, she has traveled to Children’s on Tuesdays, Thursdays and Saturdays for kidney dialysis. Her doctors pushed her to try a kidney transplant, but she said she was not convinced of the surgery’s success.
“I just didn’t feel good about it,” Rachel said. “I went on with my own life.”
Taking care of her health was always a top priority and was part of the reason Rachel thrived on dialysis. She credited her family and faith for carrying her through tough times as well.
Yet Rachel began to reconsider a kidney transplant two years ago, when access points she used in her arms and legs for dialysis started giving her problems. She rolled up her hot pink shirt sleeve to reveal deep valleys and peaks of scars along her arms where tubes had been inserted three times a week.
Once, she said, a blood clot traveled to her lungs during dialysis, turning her blue on the table. That was a turning point.
“This is just too close,” Rachel remembered thinking. “They almost lost me that year.”
Earlier blood tests proved that her mother, father and older brother, Aaron, were all compatible as donors. In the end, Mary became her daughter’s choice.
On Feb. 3 at 7:30 a.m., the two lie side-by-side in a Children’s Hospital surgery room with their respective doctors and nurses hovering around them. Each group said a quick prayer over mother and daughter before the transplant began.
Six hours later, Mary awoke from her anesthesia. Due to complications during surgery, Rachel emerged another five hours later. While William tended to his wife’s needs in recovery, Aaron took care of his baby sister.
“He was like my little slave,” Rachel joked, saying she had him pull her out of bed and walk hospital halls at 3 a.m. whenever her back ached.
Their pastor, Tim Bushfield of Community Church of East Gloucester, visited during the Douyards’ stay at Children’s. Accompanied by a guitar, he and Mary belted out praise and worship songs just hours after she came out of surgery.
“[The Douyards] are the most positive, upbeat family I know, despite the adversity of circumstances they face,” said the pastor, who has known the family for at least seven years.
Bushfield said faith plays a huge role in the Douyard’s daily life.
“It is far more deep in them,” he said. “They actually love God, they’ve got a relationship with him.”
Mother and daughter returned home within two weeks after the transplant. Mary said she feels as if nothing has changed, while Rachel was proud to report that everything is working well. She still goes to Children’s twice a week, for now, so doctors can monitor how her mother’s kidney is adapting to its new environment.
The two lightheartedly discussed the recent transplant. Family and friends have contributed a joke or two as well. They repeated one perspective an artist friend provided Rachel on the situation: “’Well, you’ll always have your mother with you.’”
Meanwhile, life is settling into its old rhythm. Both have returned to the gallery and plan to start their own work soon – Mary painting folk art and Rachel exploring photography.
Rachel has added one more item to her list of things to do in life: write a memoir. The book will be about her journey living a healthy and fulfilling life on dialysis. She has already chosen the title, “Not A Day Wasted.”
Immediately after the transplant, Rachel said she wondered aloud whether she had wasted all those years by refusing the procedure. Her mother pushed the idea aside, pointing to all the people – doctors, nurses and fellow patients – Rachel had come to know over the years.
“You helped a lot of people,” Mary said. “[Some dialysis patients] looked like the walking dead. Rachel was always life, light and laughter.”

How to help
For those interested in providing financial support to the Douyard family, a fund has been established at the Rockport National Bank at the following address:
The Douyard Family
Fund Rockport National Bank
P.O. Box 90
Rockport, MA 01966