With her family, a mom celebrates a birthday she never thought she'd see
But on Tuesday night, surrounded by family and friends gathered at Zucco's Family Restaurant, the Dalton woman celebrated her 68th birthday — very much a surprise to her doctors and family members.
For her daughter, Maggy Walto, who celebrated her own birthday on Wednesday, having her mother home after a "miraculous" holiday liver transplant is the best gift they could collectively receive.
"My Mom is Turning 68 tomorrow! This is the BIGGEST Moment of My Life," Maggy posted on her Facebook page on Monday.
The mother and daughter share a Dalton duplex so that Maggy can keep a close eye on and care for Marilyn.
"She's amazing," Marilyn said of her daughter, eyes welling up with tears during a recent interview in her doctor's office. "She put her life savings into renovating the house so I could live there." Since the 1980s, Marilyn has also been living with a diagnosis of primary biliary cholangitis (PBC), a chronic disease resulting from progressive destruction of the bile ducts in the liver. The resulting buildup of bile can result in symptoms like jaundice, abdominal pain, and in Marilyn's case, extreme swelling of the feet and the legs, also known as edema.
The cause is unknown but research indicates a relationship to deficiencies in a person's immune system.
Marilyn, a longtime Dalton resident, has herself always been a caregiver, raising her two daughters, Maggy and Amy, mostly on her own. At the same time, she worked for the city of Pittsfield for 21 years and 15 years for Berkshire Children and Families as an early childhood educator.
For years, with her positive outlook and indomitable will — "I'm feisty," she said, flashing a proud smile — she has made do with balancing her life and pain, under the care of local doctors in the Berkshires, as well as guidance from the late Dr. Marshall Kaplan of Tufts Medical Center, a known expert in managing PBC.
But this past summer, her health took a turn for the worse, starting with a severe infection in her neck that flared up Marilyn's edema and began to slow her mobility and subsequently, her mental clarity.
The urgency became clear: She needed a liver transplant. Stat.
"My mom was preparing in her mind to die," Maggy said. "I was calling liver support groups and friends. She was calling priests."
Donors make the difference
Maggy began calling around frantically, up and down the East Coast, for medical advice, and ultimately the family was connected with the transplant clinic at the UMass Memorial Medical Center in Worcester. Over the last 10 years, the transplant clinic there has conducted an average of 60 liver transplants per year, with a total of 66 transplants in 2018.
That rate has to do with the vision and leadership of Dr. Adel Bozorgzadeh, a professor of surgery, certified fellow of the American College of Surgeons, and chief of the UMass Memorial Medical Center Division of Organ Transplantation. According to hospital data, prior to Bozorgzadeh's arrival in 2008, there were fewer than 15 liver transplants performed there each year.
His mission is to update practices and policies and expand the knowledge of transplant teams to utilize the latest technologies and procedures to perform transplants — both from deceased and living organ donors — to close the gaps on a deep backlog of sick and suffering patients.
According to January 2019 data, there are currently 315 UMass patients alone on the liver transplant waiting list. The United Network for Organ Sharing estimates that 810 people in Massachusetts are currently in need of a liver transplant, while as many as 17,000 people are in waiting for a liver transplant nationwide. As many as 20 percent of these patients will die each year waiting for a donor.
"This is something that really affects the whole community, our whole society," Bozorgzadeh said.
When Maggy put out a call on Facebook and in the local newspaper for a potential donor, she received an outpouring of support.
"We heard from old neighbors, families of children my mother worked with," she said.
"I have known so many families in Pittsfield, it was wonderful to hear from them," Marilyn said.
But finding a successful donor depends on a number of factors, from complex health criteria necessary to place the patient as a priority on the waiting list, to the physical health of a potential organ, to the mental readiness of a live donor. In Marilyn's case, she also needed a donor who matched her rare blood type — AB positive.
Because of existing medical conditions, Marilyn's direct family members, although willing, were unable to become donors.
Then, on Thanksgiving eve, Marilyn got the call they had been waiting for. Stunned, she shouted for Maggy, who was in the shower at the time, to take the phone to make sure it was true. A deceased donor from the New England region, whose healthy liver seemed to be an ideal match, had been found.
"She was the sickest patient in the entire New England region at the time that organ offer came through," Bozorgzadeh said.
As he and Dr. Paulo Martins prepared for surgery, Dr. Babak Movahedi was responsible for transporting the donated liver from across the state lines and preparing it for the transplant. Meanwhile, Marilyn, her companion, Frank McDonald, and Maggy, all beelined to UMass Memorial Medical Center.
Movahedi emphasized how fortune it was to find the right donor — there are "shortages everywhere," he said, but "they are more felt here versus the South or the Midwest." There, he said, there are more donors available, but they are farther away from places like Massachusetts with the need for donated organs is higher.
'Like a champ'
So far, Maggy says her mother's body "has taken the liver like a champ."
Marilyn required less blood than most patients need during a transplant, and within a week or so after the surgery, the edema retreated, returning her legs and feet back to a more petite state.
"The person who gave my mother life must have been so strong," said Maggy.
"Like my personality," her mother said.
"That's one hell of a fighter," Dr. Bozorgzadeh said, pointing to his patient. "I didn't think she was going to make it."
Both women, said they loved their unidentified donor and the donor's family. Maggy has since written to them through the donor network and hopes to one day be able to connect.
While she shares a birthday with Elvis Presley, it was Marilyn who was the rock star at Tuesday's party. Her loved ones showered her with affection and praise, a bouquet of pink roses and a pink and white frosted birthday cake.
Though the stress of these events have taken the color out of her once brunette hair, Marilyn has taken to painting her own nails in cheerful shades as she tries to continue her path to healing. Her smile, though, never waned. Its infectious nature affected much of the staff in the UMass transplant division, with coordinators and nurses stopping by frequently to say hello, even if Marilyn wasn't her patient.
After spending the holidays in hospital and nearby rehabilitation rooms, Marilyn was finally cleared to come back to the Berkshires on Jan. 3.
"I truly believe my mom is here today because of all the prayers from this community, and these amazing doctors, my saints," Maggy said.
But the need for prayers and support is far from over. In the coming months, Marilyn will have to keep on top of a strict medication regiment to continue to help the transplanted liver adjust to its new home and stay clear of infection.
She will also need additional surgeries to widen her bile ducts to better support the function of her new liver.
Maggy, who works two jobs — one as a sales associate at Walmart and as a care manager for people with disabilities through Nonotuck Resource Associates — will have to take on a third role as a caregiver, and making sure everything in the home is adapted to meet her mother's needs. Already, she's had to install support railings on her front steps and on her mother's bed.
But neither women seem fazed by the challenges that lie ahead.
"Now, it's just a whole different life," Maggy said. "But my mom is my rock. I'm blessed."
Said Marilyn: "I just have to try to relax and breathe through it."
Jenn Smith can be reached at firstname.lastname@example.org, 413-496-6239 and @JennSmith_Ink on Twitter.
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