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Belleville resident needs new heart, encourages organ donation

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After more than three years of waiting for a heart transplant at Strong Memorial Hospital, Rochester, John W. Pierce Sr., 55, finally feels like he’s on his way to receiving a new heart and getting “back to normal.”

Mr. Pierce, Belleville, has called the Rochester hospital home for more than two years, until recently. Strong Memorial’s cardiology team had been uncertain how Mr. Pierce’s cardiomyopathy, which causes the heart to not pump blood properly, occurred. He was first diagnosed in 2002.

On one occasion, a heart was ready and waiting, but the donated organ ended up not being a perfect match, and several setbacks with pulmonary embolisms made him fall off, then onto, then off again the organ donation waiting list.

“Strong told me on the first dry run that it was a roller-coaster ride,” Mr. Pierce said recently via telephone from his hospital bed at the University of Pittsburgh Medical Center. “We laughed it off. It’s been a long, hard three years.”

Mr. Pierce recently relocated to the Pittsburgh hospital after his setbacks at Strong Memorial. He had pulmonary embolisms on a few occasions, which, according to the National Heart, Lung and Blood Institute, are a sudden blockage in a lung artery usually “caused by a blood clot that travels to the lung from a vein in the leg.”

Dr. Leway Chen, cardiologist at Strong Memorial, said since pulmonary embolisms can increase one’s lung pressure, a new heart wouldn’t work in someone with those conditions.

Throughout most of Mr. Pierce’s 2011 and 2012 stays at Strong Memorial, he declined the medical team there putting in a left ventricular assist device, or LVAD, which is a “mechanical pump that’s used to support heart function and blood flow in people who have weakened hearts,” according to the National Heart, Lung and Blood Institute.

By January, Mr. Pierce had become so weak that the team at Strong was going to send him home on palliative care. That’s when his wife, Deanna, set up an appointment in Pittsburgh, not wanting to give up hope. After he was transferred there Jan. 18, Mr. Pierce said, he was told he was too weak to receive a heart then, but the VAD procedure was offered to him again.

“I said, ‘I don’t want to wear it for one, two or three years, especially in the north country when we spend a lot of time on the water,’” he said. “I’ve got the pump in me now, and I’m recuperating.”

Once he’s fully recuperated, he will be put on the 1A list, which means within two weeks to six months after he’s healed from the VAD procedure, he anticipates getting the heart for which he’s waited so long.

Mrs. Pierce said her husband should be discharged soon from the Pittsburgh hospital, but will remain in the surrounding area at a friend’s house while waiting for follow-up appointments. After a few weeks, she said, Mr. Pierce may get a chance to come home to put on some weight before being considered for transplant. Throughout the past few years, Mr. Pierce said, he dropped from 170 to 130 pounds.

He said he credits his wife for helping him find more strength to move forward. Together they encourage others to educate themselves about becoming organ donors.

“As a family member, how you look at things changes,” Mrs. Pierce said. “Every time I see an accident that happens, it catches my breath and I wonder, ‘Will they leave a legacy?’”

She said she encourages everyone to ask themselves why they haven’t become an organ donor, and to decide whether they want to become one.

“The more you know about it, the better you can motivate yourself to a healthy lifestyle,” Mrs. Pierce said. “It’s another positive choice you can make to take the burden off of your family and friends.”

She said she believes the decision should be made while people are young and healthy, rather than family members being asked at the tragic time upon one’s death.

“Most high school kids are dying to be adults, and this is a way to show them to become a responsible, community-building adult,” Mrs. Pierce said.

Dr. Chen said New York ranks in the bottom three states for donor registration, yet the need for organ donation throughout the state and country is on the rise. More than 117,000 people nationwide are in need of donated organs, according to the United Network for Organ Sharing, which, according to its website, manages the nation’s organ transplant system under contract with the federal government.

One way people can help out the Pierces is at a spaghetti dinner benefit at 5 p.m. Saturday at the Belleville Fire Hall, 7981 Route 289. Family friend Sherry L. Ruoff organized the event, which has admission fees of $10 for adults and $5 for children ages 5 to 11. Children under 5 are free. Takeouts will be available.

Once Mr. Pierce finally receives his heart, he will be required to travel to Pittsburgh for follow-up appointments for the first year, before going back to care at Strong Memorial. Thankful to both medical teams, Mr. Pierce said he can’t wait until he gets a new heart and can simply enjoy the north country outdoors again.

For more information about organ donation, visit the United Network for Organ Sharing’s website, www.unos.org.

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