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Denver woman with rare liver disease searching for living donor

Amy Donegan painting
Posted at 7:45 PM, Apr 21, 2023
and last updated 2023-04-22 14:15:24-04

DENVER — Amy Donegan certainly isn’t one to brag about her painting skills. As she puts it, her projects are “paint by numbers” for adults.

Even still, she spends a great deal of her time now taking paintbrush to canvas in her kitchen. It has become a way for her to slow down time, when it can feel she doesn’t have much time left.

“There are definitely good days and bad days,” Amy told Denver7 from her dining room table. “Yesterday was a bad day. I was in bed all day.”

Two years ago, Amy was diagnosed with nodular regenerative hyperplasia — a rare, incurable disease that affects blood flow through the liver. Signals of the disease initially showed up in blood work during a routine exam, with no other symptoms present. At the time of her diagnosis, doctors gave her about five years to live.

“I didn’t see my life going that way,” Amy said. “It was a gut punch. You know, we just don’t expect things like that, because I didn’t feel bad. That was the whole thing. This all came about through blood tests, and the numbers were off. I felt fine.”

In the intervening time, the disease has progressed even more quickly than anticipated. Last year, Amy lost about 25 pounds, and her doctors gave her about a year left to live on current trajectory. But at the same time, she was given a new source of hope.

“I felt like, there’s something we can do,” her husband, Bob Donegan said. “When the doctor said a liver transplant was an option, we got going on that. We’re now working hard to find a liver donor.”

Because of her specific condition, Amy's doctors have recommended a transplant from a living donor. None of her kids are a match for her, so the family is now hoping an altruistic stranger raises their hand. They have posted on social media, created their own website and reached out to Denver7 to get the word out.

“The liver is the only organ, besides your skin, that can regenerate,” explained Dr. James Burton, medical director of liver transplantation for UCHealth. “You can remove more than half your liver if you have tumor on it, and you can remove more than half your liver and give it to someone else.”

According to Dr. Burton, the first successful liver transplant was performed at the University of Colorado in 1967, and the first successful living donor liver transplant between adults was performed at the university in 1997. Following a living donor transplantation, Dr. Burton said the livers of both the donor and the recipient reach about 90 percent of normal volume within about a month.

If a donor match is found for Amy, Dr. Burton predicts a good prognosis.

“My goal is that all her liver complications will disappear,” Dr. Burton said. “Having a liver transplant is a major operation. I think in Amy’s case, I might expect a good two to three months to fully recover. But gosh, by three months, I would hope she’s back to the normal Amy she was before.”

The Donegan family is now daring to be hopeful, too. They’ve already heard from some on social media who are going through living donor screening, and they hope that even more will by sharing their story with Denver7. The difference could be life and death for not only Amy, but for many others in her same situation.

“There are a lot of kind, caring people, and we just need to find the right one to help us,” Bob said.

You can learn more about the living donor process on UCHealth’s website. The process is completely confidential, and no commitment is required. Selected matches, if they decide to proceed with donation, are not responsible for any costs of the procedure.

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