Joe Manguilli went years without being diagnosed with Hepatitis C, a contagious liver disease that can be life-threatening. The disease ranges in severity from a mild illness lasting a few weeks to a serious, lifelong illness that attacks the liver. Even after being diagnosed, the damage to Joe’s liver was done and more recently Joe was in end-stage liver disease and needed a new liver. His life expectancy was two years or less. Joe was put on an organ donor waiting list.
Each year, 8,000 people die in the U.S. because organs aren’t donated in time.
Meanwhile, his family members stepped up to be tested for a match. Several family members were not a match for Joe. But one was, his brother George.
“It’s part of being a close family,” George said about his decision to donate two-thirds of his liver to his younger brother.
George, who has worked at Aetna for 34 years, currently works as a healthy lifestyle coaching supervisor and is based in Hartford, Conn. He said doctors didn’t hold back when he was getting tested to see if he was a match. As a living donor, he would face a major abdominal surgery as a completely healthy patient.
“They said regardless if we go through with it or not, it’ll be the best physical of your life,” George said, adding he saw a social worker, psychologist and the surgeon, among other health care professionals during the nearly three days of testing.
George, now 60, said he was the oldest living donor that Yale/New Haven Hospital had at that time.
Seven months after the surgery, the brothers are on the mend: George is already running and exercising normally and Joe is “recovering nicely,” he said.
Living donors save lives
There are currently 120,000 men, women and children awaiting lifesaving organ transplants, according to nonprofit Donate Life America. And every 10 minutes another person is added to the national list.
A living donation can be a better alternative for someone awaiting an organ transplant from a deceased donor. Living donations usually involve a single kidney, a segment of the liver, the lobe of one lung, a portion of the pancreas or a portion of the intestine.
“I’m living proof of what can be done,” George said. “You say ‘My god, I have to do something.’ And if I had to do it again, it’s so worth it.”
The right family dynamic
George said experts also spoke to his wife and his children before he had the surgery.
“If my wife or children had a problem with me doing the surgery, it would have been an automatic ‘No,’” George said, adding all of the questions helped his family understand what was going on. “They were checking to make sure we had the right family dynamic to make this work and that we were all there to support each other.”
George also said there was special attention given to his emotional health throughout the entire process.
“In the talks before and after surgery, they’d ask me how I was feeling, other than the physical pain,” George said. “They know you’re thinking that I’m walking in healthy and now I’m leaving here sick and not feeling well. And they told me that’s normal and that the feelings of ‘What the hell did I do?’ dissipate over time, which they did.”
George said his care team went over scenarios – some a bit gloomy – to make sure he was “ready” for what could possibly happen to himself or his brother.
“They really prepared me for what could happen, good or bad,” George said. “My donor team was made up of eight different experts and they all had to completely agree to let me donate to my brother. My donor team had to meet with Joe’s recipient team – along with my family – to determine if they would move forward.”
“If anyone on either side – including my family – had something that didn’t sit well with them then it would not have been a match and blind since there is no elaboration on cancelled matches,” he said.
A bigger purpose
George said he’s hopeful his story and message will have an impact.
“Often times, those waiting for organs are too sick or have surgeries cancelled for any number of reasons,” George said. “Many, many, many more situations don’t end up like this one. I always knew lying in that hospital room after the surgery that, as crappy as I feel right now, I know I’m going to go home.”
“Many people don’t have the same luck,” he said.
The gift of life is bigger than many realize. For more information, visit the American Liver Foundation the National Kidney Foundation, the American Transplant Foundation, the U.S. Dept. of Health and Human Services, the American Red Cross Blood Donation and the National Marrow Donor Program.