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L.I. needs more organ donors

Local man waits, hopes for a new heart

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A Rose Garden rededication ceremony to honor Long Island organ donors took place last Saturday in Eisenhower Park.

Approximately 100 people turned out for the 16th annual ceremony — which years ago attracted just a handful of people.

“These organ donors are unselfish in a time that is tragic,” said Mike Sosna, president of the Long Island Transplant Recipient International Organization. Sosna became involved with TRIO after receiving a kidney from his father, and was named president of the organization in 2006.

“We’re here today to honor donors and donor families who have given the gift of life,” he said.

One 11-year-old recipient who attended the ceremony is actively trying to change lives. Lauren Shields, who spoke at the event, was infected with a virus that attacked her heart, said her mother, Jeanne. Lauren underwent a successful heart transplant in March 2009.

While Jeanne Shields said she is grateful that someone chose to donate their heart for her daughter to use, she added, “When you’re on the other side and waiting, it can be the most helpless feeling in the world.”

According to Sosna, 18 Americans die every day waiting for a donor organ, and 1,257 people had organ transplants in New York in 2010. Given those numbers,

Lauren and her mother decided to get involved in the effort to increase donor registration on Long Island.

New York state has among the fewest registered organ donors in the nation, said Sosna, and a main reason is that when residents are asked to donate their organs on the form at the Department of Motor Vehicles, a response is not required.

Now, the Shields family and TRIO are working to implement Lauren’s Law. The legislation would require residents to state whether or not they want to be an organ donor.

Jeanne Shields explained that it is important to have the words “not at this time” on the form for those who choose not to participate rather than just “no,” because otherwise doctors would not be allowed to ask their families about organ donation.

While the proposed law easily passed the State Senate’s Transportation Committee in April 5, and was approved by the full Senate on Lauren’s birthday, April 13, TRIO came up against unexpected opposition in the Assembly, and will return to the Legislature in a few months to try again.

Another important organ donation measure, signed into law nearly three years ago, enables New Yorkers to sign up to be organ donors online, Sosna said. But despite its approval, he added, the law has yet to be implemented.

Hundreds of New Yorkers are in need of organs, one of whom is East Meadow resident Jeff Whitman. Whitman was born in 1966 with a heart block and a murmur. Due to the relatively primitive technology of the time, doctors decided to simply monitor his condition.

Whitman, who moved to Pennsylvania and lived there until recently, received a pacemaker when he was 23, to stimulate his decreased heart rate. Years later, when his heart problems worsened, he received a biventricular device to improve his heart function.

During that procedure, doctors accidentally perforated his heart, but they were unaware at the time that they had done so. For Whitman, the pain and chest pressure got worse as months passed. His doctors finally realized that his lungs and heart were filling with fluid and determined the cause. He was told he would need a heart transplant.

Whitman has nearly died a number of times, enduring heart rhythm problems that caused the device in his chest to shock him as it attempted to establish a normal rhythm, an infection of an implanted left ventricular assist device, known as an LVAD, allergic reactions to medications and induced comas.

He was first placed on a transplant list in March 2009, when he received the LVAD, but he was removed the following year, when his wife was re-diagnosed with colon cancer. Prospective donors must have support at home in order to stay on the list. Last June, his wife died.

Living in a rehabilitation facility after another stint in the hospital, Whitman was looking for friendship and support when he reconnected with a former high school friend, Denise Tristano Pascalis.

“He needed a home and support to get back on the list,” said Pascalis. She opened her arms and her home to him.

Two weeks ago, East Meadow residents welcomed Whitman home with a gathering at Miller’s Ale House. He is now a patient at Montefiore Medical Center and — now that he has support — is hoping to get on the facility’s heart transplant list within the next few months.

“Good things have to come your way at some point,” said Pascalis.

To contact Jeff Whitman, email him at xcaliber36x@aol.com. To learn more about LI TRIO, visit www.litrio.org.

Comments about this story? SKoehle@liherald.com or (516) 569-4000 ext. 287.