A fresh perspective on life

Photo: TJ Lievonen/University of Miami

By Sabrina Pizziol and Janette Neuwahl Tannen

Photo: TJ Lievonen/University of Miami

A fresh perspective on life

By Sabrina Pizziol and Janette Neuwahl Tannen
Alumna Diana Donnarumma received a multi-organ transplant and is now working to help others who suffer from chronic illnesses.

Two years ago, doctors began telling University of Miami alumna Diana Donnarumma to prepare for the end of her life. Her intestines were failing and it was wreaking havoc on the rest of her body.

“If that’s the only quality of life I had, I was ready to go, I had accepted death,” she said.

She could either go peacefully, or try to get a rare transplant. There were no guarantees, but eventually, Donnarumma decided to fight. She was listed for a transplant, and shortly after, she was matched.

Now, Donnarumma is preparing for her wedding. That’s in between volunteering for the One 8 Fifty Foundation, a transplant organization, and working to expand Chronically Fit, a thriving business she started with her mother, that makes stylish backpacks for patients who need IV nutrition, and giving speeches across the United States about her transplant story.

“I never could have imagined this is how my life would turn out,” said Donnarumma, who majored in public relations and Spanish. “Health, normalcy, and success are what I wished and hoped for, but I didn’t know it was ever going to happen, so I just relied on my faith.”

Recently, Donnarumma came back to the University’s School of Communication to visit professors and friends who supported her, as well as to share her story with a class of public relations students. Lecturer Heidi Carr said that Donnarumma’s story touched her students as deeply as her persistence impressed Carr. The two continue to stay in touch five years later.

“She is one of the reasons why I decided to come teach full time at UM,” said Carr. “She is this joyful person who wants to live life and was so positive. She has had this huge obstacle put in front of her, and that was not stopping her. She is living her life to the fullest.”

Donnarumma spent most of her adult life in and out of hospitals with constant infections and fevers, and never received a concrete diagnosis. Despite her health, Donnarumma came to the University of Miami determined to graduate on time.

But during her junior year, Donnarumma began suffering from fatigue, brain fog, unstable blood pressure, headaches, and abdominal pain. Ultimately, she had to take a medical leave of absence. Doctors diagnosed her with an auto-immune disease called dysautonomia, or failure of the autonomic nervous system, which controls involuntary body functions such as heart rate, blood pressure, and sweating. Specialists also discovered that Donnarumma had limited motility in her gastrointestinal tract, preventing her from digesting food normally.

She was able to return to classes and graduated in 2015 with the help of her mother, who had moved down to help her get to classes when she was particularly weak. Donnarumma was even able to graduate a semester early and quickly started working in communications for VITAS Healthcare in downtown Miami. 

But soon Donnarumma’s health took a turn for the worse again. She was removed from work by fire rescue and after a month spent in the intensive care unit at University of Miami Hospital, her doctor recommended that Donnarumma return home to Clarence, New York, just outside Buffalo where she could be with her family while she was in the hospital.

At home, Donnarumma’s health continued to decline. Doctors diagnosed her with gastroparesis, a condition that affects the stomach muscles and prevents proper stomach emptying. This prompted an extensive gut rehabilitation surgery, where her colon was removed and she was given an ostomy bag. But a year later, Donnarumma was still receiving nutrition and hydration through an IV with no end in sight to her daily bouts of vomiting. That’s when Donnarumma’s doctors said her intestines were failing and suggested a transplant.

After some soul searching and rigorous medical evaluations, Donnarumma was placed on the transplant list. Only around 1,000 people around the world have received intestinal transplants so far, so there was not much data, which worried Donnarumma. On Oct. 23, 2017, Donnarumma got a call that there was a donor. She and her family jumped on a medical flight to Washington D.C.’s Georgetown Hospital, and after eight hours of surgery, Donnarumma received new intestines to help her carry her digestive load. Donnarumma’s organ donor, a young woman from Texas named Heather, saved six more lives that day as well.

After a 10-month recovery, Donnarumma’s life improved dramatically. She is now able to eat again – a luxury she had to give up for five years before her transplant. She also gained a new perspective on life.

I have a sense of gratitude that’s very different from other people,” she said. “I see each day as a gift, not just another day, and I’m living for joy and to make the world a better place.”

Still, there was one thing Donnarumma wanted to change once her health improved. As a girl who always enjoyed dressing fashionably, Donnarumma dreaded lugging along her ugly, heavy black IV nutrition backpack everywhere. Therefore, Donnarumma decided to make her own backpack and shared photos of it on her social media accounts. Other chronically ill patients saw it and asked if they could buy one.

Soon after, Donnarumma and her mother Debra decided to create a business, Chronically Fit, featuring customized, fashionable medical backpacks for people on IV nutrition or central feeding lines. 

“My goal was to close the gap between fashion and medicine,” said Donnarumma, explaining that the old backpacks made her feel more isolated. She also wants to educate others, so that “sick doesn’t mean unfashionable.”

Today, Chronically Fit has customers from all over the world and they are set to pair with an infusion health care company in the next few months.

Donnarumma said one lesson she learned from UM’s public relations classes has become particularly relevant in her life.

“The professors always told us to be transparent,” she said. “Being able to publicly share my story helps me because by sharing my story, I am able to educate others about how organ donation saved my life and how there are options for people who want to do something beautiful and heroic.”

In June, Donnarumma will marry her fiance Conlan, who she met after returning home from her transplant and recovery. Some of her UM friends will likely be standing at the altar. And the father of her transplant donor may also be walking her halfway down the aisle.