Weekly Feature

2017-10-11 / Front Page

Clarence native waits for lifesaving intestinal transplant


Diana Donnarumma Diana Donnarumma When Diana Donnarumma was a junior at the University of Miami, she had her sights set on a career in marketing. She began planning for what life would be like when she graduated from college and was confronted with the usual life decisions people make in their early 20s.

Yet, Donnarumma never had the luxury of making those decisions. Instead, her focus was consumed by how she could fight off the constant illnesses that were threatening her life.

The 25-year-old Clarence native was majoring in Spanish as well as marketing and public relations before becoming increasingly ill, so much so that she was forced to take medical leave for a semester. Her mother temporarily moved to Miami simply to help her daughter get to her classes.

Doctors soon discovered that Donnarumma had contracted Lyme disease from a tick bite more than a decade ago and that it had gone undiagnosed.

Her body worked to fight off the bacteria, though the impact of a constantly overworked immune system took its toll. The disease developed into a condition known as “dysautonomia,” which causes the nervous system to gradually shut down.

Dysautonomia affects heart rate, blood pressure, digestion and temperature control — work that is imperceptible to us but which keeps the human body alive and functioning.

Upon getting her degree, Donnarumma found a job at a large marketing firm in Miami, though it wasn’t the kind of introduction to the real world that she hoped for. While at work, Donnarumma experienced her first life-threatening symptoms.

“I thought I was having a heart attack because the pain in my chest was so awful and my blood pressure was just crashing,” she said.

She lost consciousness at her office and was taken to the hospital by fire rescue. Doctors told her that they hadn’t seen such symptoms in someone younger than 85. Donnarumma’s condition worsened rapidly, forcing her to resign from her first job out of college. She moved back to Buffalo to be with family and immediately made a trip of hospital visits.

“They actually had to do an inpatient transfer to Cleveland Clinic because they basically told me, ‘You’re going to die here,’” Donnarumma said.

Cleveland Clinic found that Donnarumma’s gastrointestinal muscles were essentially paralyzed. Her digestive system had lost its ability to move food along the tract. As a result, Donnarumma continues to suffer from cyclical bouts of vomiting and intense stomach pain.

The hospital removed Donnarumma’s colon, to little effect, before recommending a transplant of her large and small intestine as well as the removal of a portion of her stomach.

“Eating is so much a part of our culture. It’s how we socialize. It’s what we do when we go out with friends,” Donnarumma said. “Explaining to people that you can’t eat is very isolating.”

Intestinal failure can lead to fatal malnutrition unless the body receives total parenteral nutrition — an intravenous feeding that bypasses the usual process of eating and digestion — or an intestinal transplant.

Milliman, a global consulting and actuarial firm, released a report on the estimated costs of U.S. organ and tissue transplants. The report indicated that only 49 intestinal transplants were performed each year from 2014 to 2017 compared to the almost 17,000 kidney transplants performed during that span. The research also shows that the transplant is estimated to cost about $1.1 million for the pre-transplant evaluation, procurement, hospital transplant admission, physician services and medications.

Fortunately for Donnarumma, she has been admitted to the United Network for Organ Sharing List and is awaiting a donor match, but getting her name on the list took more than a few phone calls. She visited three transplant centers and underwent an extensive and exhausting interview process with each of them.

“Going to these transplant centers is like the most intense and invasive job interview you’ll ever have, because your life depends on it,” she said. “You have to go through every department in the hospital for them to approve you.”

Donnarumma hopes that once the transplant takes place, she can gain back a modicum of the life she lived before her health regressed. It will allow her to eat, reduce the risk of line infections, remove the need for TPN and could stop the chronic cycles of vomiting.

Despite the mountain of uncertainty in front of her, Donnarumma refuses to slip into a depressive state that might rob her of the humanity that gets her through each day.

“When I moved back home, I promised myself that it wouldn’t be the end of me,” she said. “People with my condition get manically depressive. For me, it’s a time I can try everything that I’ve wanted to try or do something to help other people.”

Donnarumma looked toward the entanglement of tubes and intravenous lines surrounding her and discovered how she would do just that.

Often irritated at the uninspiring selection of medical backpacks on the market, Donnarumma decided to create one herself. Through starting Chronically Fit Backpacks, she is able to bring to those who require TPN a chic alternative.

The backpacks feature pockets that are sewn into the interior so that an IV line can be discreetly run through the pack and under one’s shirt. The top of the pack has a clip that the infusion bag can hang from.

One customer, who suffers from a condition similar to Donnarumma’s, told her she had never picked her daughter up from school because of the social anxiety stemming from her TPN. She did so for the first time wearing a Chronically Fit Backpack.

“I decided that just because I’m sick doesn’t mean I need to stop my self-maintenance or give up on appearance,” said Donnarumma. “Sick doesn’t mean unfashionable.”

Now, Donnarumma must wait for a donor match that fits her blood type and body size. Once one is located, she will be put on a direct flight through Wings of Hope to Mount Sinai Hospital in New York City. Donnarumma will have to be on the operating table before the donor’s organs even arrive in what is a process that tests the limits of timing and precision. Donnarumma knows that her phone could buzz with that fateful call at any moment.

“The hardest part is not knowing when it’s going to happen,” she said. “Your life is on hold because you can’t leave. You have to be ready. But we’ve had our bags packed for three weeks now, and now we’re just on standby.”

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