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A serious illness, a rare transplant, and brighter hopes this Christmas for a Clarence family

Diana Donnarumma plans to spend Christmas nestled inside the home where she grew up, enjoying the company of more than a dozen loved ones and a mutt named Sunny, and – if she can manage it – at least a few sips of her first holiday mojito since college.

"Last year, we celebrated Christmas in the ICU," said Donnarumma, who hasn’t been able to eat or drink during Christmastime for the last three years.

A debilitating gastrointestinal condition forced her to survive on intravenous nutrition. It took three surgeries in nine months, and the death of a young Texan who donated her organs, to give the 26-year-old from suburban Buffalo a renewed lease on life.

It was a rare gift indeed. Only about 100 intestinal transplants have been performed this year in the United States – and fewer than 3,400 in all since they became available in 1990.

“Christmas means more this year,” said Donnarumma’s mother, Debra, a former pharmacist who helped nurse Diana to better health. “The past few years we’ve lived on prayers and the support of friends. Without faith, I don't think we could have gotten through it.”

Loved ones – including several who will drive in from out of town on Christmas Eve – will exchange gifts, sing carols and sip wine at the Donnarumma home in Clarence.

There will be no disagreements. No pettiness. Only joy and hopefulness.

"People tend to focus on trivial issues but when you stare death in the face, none of these things matter anymore,” Diana Donnarumma said. “In the end, what matters is family – and letting them know how much you love them."

Diana Donnarumma dishes out a chicken stir fry to her parents, Glen and Debra, earlier this month in their Clarence home. "It's nice having my wife and Diana home," Glen said. "The past three, four years we weren't really living together. As you go through it, you wonder if it's going to end." (Robert Kirkham/Buffalo News)

Hard times

You no longer have to fill out an organ donor card at the Department of Motor Vehicles in New York State, although you can. The state last year made it easier to share your wishes, including online. (Buffalo News file photo, 2016)

Donnarumma grew up in Clarence. Slender, soft-spoken, but bold and outgoing, she tries to take a positive approach to her unpredictable health. Her voice rises when she comes up with one of her frequent one-liners, like "I wish retail therapy was covered by insurance."

She and her mother have spent much of the last four years in hospitals across the Midwest and along the East Coast, focused on Diana’s care. Meanwhile, her father, Dr. Glen Donnarumma – an oral surgeon – has held down the fort at home, dropping everything to come see his wife and daughter during critical times and most weekends.

"I feel very fortunate that I have an occupation that allowed us to do that,” he said. “So many people have tough circumstances and aren't in that situation. We looked at it as we were a team."

Still, sickness pays no heed to color, creed or privilege. The family – including Diana’s brother, Dan, and his fiancée, Jessica Drevins – opened Christmas presents last year at Diana’s bedside at MedStar Georgetown University Hospital in Washington, D.C., two months after her intestinal transplant surgery.

Family members believe the journey to Georgetown started when Diana Donnarumma was 7, after her pediatrician dismissed a bull's-eye rash as a relatively harmless spider bite. Low-grade fevers and general malaise followed regularly during the next decade.

A bout of mononucleosis in her junior year at Nardin Academy laid her low for three months. A milder spell of the same condition followed during senior year. Donnarumma pushed through it, determined to graduate on time and set off for the University of Miami, where she rowed on the crew team as a freshman and pursued a major in public relations, marketing and Spanish.

Her health went south again in 2014 – her junior year in Miami – when she had to take a medical leave from school because she was suffering daily from muscle fatigue, brain fog, unstable blood pressure, headaches and abdominal pain.

Specialists also learned she had limited motility in her gastrointestinal tract and diagnosed her with an autoimmune disease called dysautonomia, a condition in which parts of the body that typically run on cruise control – including the heart and intestines – can falter.

Her mother traveled from Western New York the following year to help Donnarumma through another bout of sickness and graduate on time in May 2015. A South Florida physician diagnosed her with Lyme disease and chronic fatigue syndrome, and put her on intravenous antibiotics, detoxifying herbs and Vitamin B-12 injections.

When feeling her best during those college years, the 5-foot-7 Donnarumma weighed 135 pounds. The ability to graduate lifted her spirits enough to take a job afterward with a downtown Miami PR firm, despite her health challenges.

"I had my own little cubical, living the dream," she said.

A month into the job, she needed a minor heart procedure. A week after returning to work, she became extremely nauseous, threw up and collapsed. After a monthlong hospital stay in intensive care, specialists would release her only on the promise she would return home with her family to seek a definitive diagnosis and higher level of care.

That fall, a vomiting problem that began during her Lyme disease treatment worsened. By then, she was no longer able to keep down the food she consumed.

Diana Donnarumma focused in part on her mother's small enterprise, Chronically Fit, accessorizing IV feeding backpacks during her transplant journey. (Robert Kirkham/Buffalo News)

Eating stops

This wasn’t how Donnarumma envisioned her mid-20s. She wanted to spend time socializing with friends, building a career, nurturing a new romance. Instead, she had to focus on fighting for her life.

The first of several big steps came in early 2016, when doctors at the Cleveland Clinic diagnosed her with gastroparesis, the inability of the stomach to adequately push food further down the digestive tract.

In October of that year, a surgical team performed an ostomy, removing her colon.

It didn’t help.

Donnarumma rang in 2017 on intravenous nutrition and hydration. As the year progressed, she also began taking as many as three anti-nausea IV medications. She accepted the fact the she had to eat and drink through a tube connected through her chest to a central line near her heart – but 30 to 40 daily bouts of violent vomiting took a toll.

"I just can't live like this the rest of my life," Donnarumma told her mother. She considered hospice care – but already had fought her sickness so hard.

"Transplant is your last resort,” Debra Donnarumma said. “It's not something you would otherwise choose."

She and her mother have been virtually inseparable since the wave of hospitalizations began. One way they’ve handled the sadness and down time? Addressing a small problem that turned into Diana’s pet peeve: having to carry around an IV feeding backpack when she left the house.

Her first pack was plain, black, ugly. "It screamed, 'cheap, sick.' It was like darkness,” Diana said.

Debra Donnarumma started an online business, Chronically Fit, that sells colorful, accessorized infusion backpacks for people on intravenous total parenteral nutrition or central feeding lines. Her daughter, the face of the small enterprise, handles social media. They have sold to more than 100 to customers from as far away as England and Australia — and expanded to offer a variety of sporty medical masks.

One customer wrote the Donnarummas: "The first day I got your backpack was the first day I ever picked my children up at school."

"Hearing things like that is another driver for me,” Diana Donnarumma said. “It gave me something to wake up for in the morning. It gave me focus."

Diana Donnarumma will be able to enjoy many of the foods her family traditionally eats on Christmas, thanks to new intestines via an organ donation from a 20-year-old Texan who died in the fall of 2017. She needed IV nutrition and fluids to survive during the last two holiday seasons. (Robert Kirkham/Buffalo News)

A life-saving transplant

Few U.S. hospitals offer the kind of transplant Donnarumma and her family hoped Diana could receive. The best situation would have been a new stomach, small and large intestines and a pancreas.

In summer 2017, a specialist suggested the family visit Mount Sinai Hospital in New York City, and MedStar Georgetown University in Washington. Donnarumma was in an emergency room near her home in September, after a bout of heavy vomiting, when she learned that she was on the Georgetown list. A member of the hospital transplant team called her at 9:30 p.m. a month later, on Oct. 23, while she was watching a movie on Netflix.

"They asked, 'You think you can make it to D.C. tonight? We have your organs.' I didn't know whether to cry or scream with joy,” Donnarumma said. “I was just frozen."

Joseph DeMarco Sr., founder of the nonprofit Wings Flights of Hope, flew her to her appointed destination. Meanwhile, a Georgetown medical team flew southwest to harvest the organs that Donnarumma would need. The antibodies and blood type of the deceased donor were a perfect match.

"Six other people were saved that night, too," Debra Donnarumma said. "It was because of a 20-year-old girl from Texas. That's all we know."

During an eight-hour surgery the next day, Dr. Satoshi "Cal" Matsumoto – director of Small Bowel Transplantation, as well as the Center for Intestinal Care and Transplant at the MedStar Georgetown Transplant Institute – transplanted the young Texas woman’s small intestine and right portion of her large intestine into Diana Donnarumma.

“I’ve got two birthdays now,” she said. "In a perfect world, I would have gotten the stomach, too, and the pancreas. The problem is the pancreas shares the same blood supply as the liver and the liver gets first priority, since there are 17,000 people on the waiting list." Doctors told her it could take years, if ever, to receive a stomach.

Matsumoto told the Donnarummas that in 85 percent of similar cases, once the intestines are transplanted, the stomach starts working. Diana fell into the minority category. She continued IV feedings, and vomiting, until spring of this year, when Matsumoto and his team again cut her from breastbone to pelvis and performed a gastric bypass so Donnarumma’s new intestines could carry her digestive load.

"The surgeon told me her stomach looked like and old sack. There was no muscle tone," her mother said. "But he said, 'When I looked at her intestines, if I hadn't put them in myself, I would have thought they were her originals."

Diana Donnarumma has seen her new boyfriend, Conlan Kreher, almost daily since the two started dating during the summer. They relax in the Donnarumma family room with Diana's 5-year-old dog, Sunny. (Robert Kirkham/Buffalo News)

Hope and gratitude

The Georgetown transplant staff sent Donnarumma home after her intestinal surgery with a tote bearing 70 medications. A central port remains in her chest – and continues to be used to provide some of her medications. She needs at least 2 liters of fluid each day to stay well hydrated. She takes prednisone and anti-nausea drugs daily. She will continue to take anti-rejection medication twice a day for the rest of her life.

Transplant surgery alone cost $2 million, according to the family, and other incidentals have run several hundred thousand dollars more. Family health insurance covered most of the costs until Donnarumma’s illness progressed and she became eligible for disability insurance and benefits.

She is eating again, and she and her family count their blessings.

"An ordeal like this can bring together a family or separate you," Glen Donnarumma said. "It's been challenging, a lot of traveling. Things have settled down. It's nice having my wife and Diana home. The past three, four years we weren't really living together. As you go through it, you wonder if it's going to end."

Diana Donnarumma also found romance over the summer. She met Conlan Kreher online. He, too, grew up in Clarence, and lives in North Buffalo. He is pursuing a master’s in biochemistry at the University at Buffalo and plans to go to medical school.

The couple spent their first date in August sitting along a local lake. Diana’s worried father admits he drove by several times. After all, his only daughter had spent so much time in the years beforehand under the watchful eye of at least one family member.

"Diana is beautiful. She has a beautiful personality and soul,” Kreher said. “I've just never met somebody who can always find positives in everything. That's something that's really important."

Donnarumma and Kreher see each other almost daily. They've gone to the Botanical Gardens, Canalside and a host of restaurants.

She is still learning what foods will settle well and what will not. She has been allergic to seafood since childhood. Red meat, fried foods and several other dishes are no longer on the list. Her diet consists of chicken made in a variety of ways, including stir fry. Easier to digest breads, pasta and potatoes also are staples of her new diet. The turkey burger at Allen Burger Venture, tacos at Chipotle and Lloyd, and Rocco's baked wings have become her go-to dining experiences.

Kreher, meanwhile, is gluten- and dairy-intolerant, so lots of questions need to be asked while ordering.

“We’re every waiter’s dream,” Donnarumma said.

The young woman won’t be able to enjoy the traditional beef tenderloin roast during Christmas dinner, but will gladly munch on a chicken dish she will help make herself and – if it’s a really good day – sip on a mojito.

Four stockings hang over the fireplace in the Donnarumma family room. A tree stands nearby, covered with ornaments that recall family vacations and the old school days of Diana and her brother, an accountant in New York City. A small sign near the top of the tree the reads “You must believe to achieve.”

A smaller “memory tree” shimmers in the family sunroom. Wide bows circle its branches. A friend awaiting a transplant sent Texas flags to add to its décor. Two ornaments stand out amid the blue, red and green bulbs: a silver-edged trinket that reads “Proud to be a Texan,” and an orb marked 10/24/17 – the date the Donnarummas' family life began to improve.

Donnarumma credits her family, faith and dog – a chihuahua, dachshund and terrier mix she rescued from a Miami animal shelter – for helping her through her health ordeals. She also is grateful to “all the people praying for me, and on my behalf.” She plans to reach out to the donor’s family as soon as she feels healthier. She hopes she will get to thank them personally one day.

"A lot of times, when I felt there was no hope, and I couldn't fight anymore, I'd realize that I was being very selfish," she said. "A girl died to save my life, and my parents have given up their lives to get me better. The community has been so wonderful."

What will the new year bring?

If all goes well, a family vacation to Fort Myers, Fla., and a side trip with mom to Miami to visit friends, as well as a July 12 wedding in Brooklyn, where her brother will be married – and she will be a bridesmaid.

“When things happen, they go downhill fast for me, so there’s still some unpredictability,” Donnarumma said, “but I think it’s going to be a year of joy. I’ve already been so grateful for what has happened in the last year.”

email: refresh@buffnews.com

Twitter: @BNrefresh, @ScottBScanlon

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