Carmel father 1 of 111,000 in U.S. waiting for organ donation

Written by | Theresa Juva | The Journal News

NEW HAVEN, Conn. — Tony Bueti is determined to survive yet another grueling wait for a new heart.

The Carmel resident waited four months to get his first transplant in 2008, after suffering from congestive heart failure caused by congenital heart disease.

But scar tissue has caused that heart to also fail, and he was placed on a waiting list again about a year ago.

"The doctor says the sooner the better," the 51-year-old said at Yale-New Haven Hospital, where he has spent the past month. "It's more difficult the second time around because you know what you went through the first time, but you have to be strong."

His condition is getting worse, and last week, he was classified among the sickest patients on the waiting list.

It means he's a top candidate for a transplant, but if he gets too sick, doctors can't perform the surgery.

"It's sad and happy, because someone has to die for you to live," Bueti said from his bed Thursday with his wife and brother at his side. "You are happy you are getting a heart, and at the same time, you know someone has to die. That's the hard part to accept — that someone had to die."

Bueti's first heart came from Mike, a 33-year-old ex-Marine from Pennsylvania who died of a brain aneurysm . The Bueti family has met and kept in touch with Mike's mother and family.

"Now she wants to be here when her son's heart is going to be taken out," Grace Bueti, Tony's wife, said through tears. "I don't even know the words. You are so grateful. You don't know how to thank them."

She is hopeful Bueti will get another lifesaving gift.

"Mike gave us three good years," she said. "Hopefully the second heart will give him another chance. A second second chance."

Bueti is one of 3,185 patients waiting for a heart transplant in the United States and part of the growing number of people who need organs. In 2000, 71,628 people were waiting for organs; that has ballooned to more than 111,000 people today, including 9,682 in New York state, according to the Organ Procurement and Transplantation Network.

As transplant operations and survival rates have improved over the years, more doctors are seeking transplants for their patients, said Dr. Patricia Sheiner, director of liver transplants at Westchester Medical Center in Valhalla. And with better disease treatment, patients waiting for transplants are now living longer.

Brain death is generally how organs qualify for donation, though some organs can also be used after cardiac death, Sheiner said. Only about half of eligible organs in the state are actually donated, she said.
Getting more donors

"If we had a higher consent rate, maybe we could have lowered the deaths on the waiting lists," Sheiner said

In 2010, 6,521 U.S. patients — about 18 people a day — died waiting for organ transplants, according to the network.

Organ-donation advocates argue that more public outreach is needed. About 16 percent of New Yorkers are enrolled in the state's Donate Life registry.

Twenty-two percent of adults in Putnam County are registered as donors, followed by 15 percent in Westchester and 14 percent in Rockland, according to the New York Life Network, which tracks statistics from the state. The Rockland District Attorney's Office launched a public education campaign in the fall with the New York network to boost enrollment there, and advocates across the region address thousands of people each year about donation.

"People don't like to talk about their mortality," said Jeff Graham, a liver recipient from New Rochelle and co-president of the Transplant Support Organization. "When you enroll in the registry, you are admitting the fact that you are going to die some day. There are a lot of myths so that comes back to education."

Some believe their religion doesn't allow it, or doctors won't work hard to save them if they know they are donors. Others think their age or medical history automatically disqualifies them, but that's up to doctors to determine, Graham said. And it's not just about giving a heart, liver or kidney.

"Maybe it's not the organs that can be donated, but you can give the gift of sight to someone," Graham said, noting that more deaths qualify for tissue donation than organ donation.

Tissue donation includes skin, bone, heart valves, corneas, tendons and veins. Organ and tissue donation from one person can help or save as many as 50 people, the National Institutes of Health said.

"If you want to be a donor, then take the steps to be a donor, and let your family know," he said.
Not at this time

Advocates have also pushed for legislation.

A law was passed last year that would allow electronic signatures on registry forms, but the online sign-up hasn't been implemented yet. Advocates say making it more convenient for people to enroll would boost the registry. Currently, people have to mail in signed Donate Life brochures or state Department of Health forms or sign up at the Department of Motor Vehicles.

Some legislation has been controversial. Last year, former Assemblyman Richard Brodsky, D-Greenburgh, unsuccessfully proposed a "presumed consent" system, which would assume everyone is a donor unless they have explicitly opted out.

State Sen. David Carlucci, D-Clarkstown, this year sponsored a bill that would require people to answer on driver's license and ID applications whether they want to be a donor. Called Lauren's Law for 11-year-old Lauren Shields of Stony Point who received a heart transplant, the legislation would have had people check "yes" or "not at this time." The "not at this time" option meant families could still be asked about donation after a relative died.

Opponents of the bill, including the Rockland Business Association, contended that people should be entitled to respond "no" with certainty. The bill passed the state Senate, but a revised version with the "no" choice fell flat in the Assembly and lost advocates' support.

Although the bill failed, "it led to a lot of discussion about what we need to do," said Lauren's mother, Jeanne. "It's put more attention on the fact that our rates are so incredibly low."

The Shields family has shared Lauren's story at softball tournaments, community events and new citizen ceremonies.

Typically about 25 people will sign up at an event with about 200 people, Jeanne Shields said. The hope is that those people will encourage their family and friends to also enroll, she said.

Heart transplant recipient Jessi-Ann Bettcher of Brewster visits schools and has appeared on billboards and bus ads for the New York Donor Life Network. She has received Facebook messages from people who enrolled after seeing her ad.

"Before you make a decision, educate yourself about it," she tells people.

"If you've never heard of it, go and just Google it." Donating, she said, "could be the last great act of your life."

Meanwhile, the Bueti family perks up every time an unfamiliar face enters the hospital room.

"You never know who is the one who will bring the news," said Tony Bueti's brother, Carmelo.

He admires how his brother has handled his fight.

"It's very difficult, but he is a very courageous guy and so is his wife," he said. "That gives you a lot of strength and hope."

Tony Bueti talks about tending his vegetable garden with his children and cooking homemade pasta. The former landscape contractor likes working on his house and made sure to fix a few things before he left for the hospital.

And even though they visit often, he misses his four children , all in their 20s, two of whom also have congenital heart disease.

He has shown them how to persevere , Grace Bueti said.

"I'm being a dad," he chimed in. "That's my job — fight for my kids and my wife."