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YNHH patient stories:
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was before anyone had heard about cholesterol...We'd put a half a
pound of butter on a steak and we'd eat provolone and salami sandwiches.
I overdid it on all the food that tastes good, so I guess I deserved
what I got for not dieting properly. Al Mellilo |
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"I'm 15 minutes older than him, but now I'm younger because of my heart and I'm not going to respect him," Al said with a grin, pointing to his brother while talking to a roomful of reporters who laughed frequently at the brotherly banter.
The Melillos suffered from cardiomyopathy, a weakening of the heart muscle. Tinny had spent about eight months at YNHH awaiting his new heart, while Al waited just a few weeks. The Melillos reported that their father and uncles each had heart problems.
"We don't know much about the genetic causes of cardiomyopathy in clinical medicine," said George Tellides, M.D., a cardiothoracic surgeon who transplanted Al's heart. "There's a lot of research going on at the moment but we were unable to find a previous report of adult twins having heart transplants."
While the twins know that genetics may have played a role in their condition, they recognize that their eating habits may have also contributed to their heart problems. "Our father and his brothers had heart problems, but this was before anyone had heard about cholesterol," Al recalled while sitting in his favorite easy chair at home. "We'd put a half a pound of butter on a steak and we'd eat provolone and salami sandwiches. I overdid it on all the food that tastes good, so I guess I deserved what I got for not dieting properly."
The discussion moves to Tinny's recovery. In the years since his heart transplant he has been on an exercise program where he regularly rides a bicycle for five miles, swims each day and walks a couple of miles. He still is on medication, but not nearly as much as Al, who is in the early phase of his recovery.
"I'm on an awful lot of medicine, but I found a way to take it," Al says. "My wife makes me chocolate milkshakes. I grind 'em up and drink up. My brother chews 'em. The smart one grinds 'em up and the other one swallows 'em."
Al thinks he has had it a bit easier than this brother, since Tinny spent so much time in the hospital before his surgery. "I was healthier when I had my surgery, so why shouldn't I think that I'd have it easier? And besides, everything I do in life is better than what he does anyway," Al says.
Tinny comes back: "Wait until we get one-on-one on the basketball court. We'll see how much good you are."
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now I feel pretty young and I'm doing very well. I feel like a new
person. Tinny Mellilo |
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The talk turns to music. Al plays guitar and Tinny plays the mandolin. They specialize in Italian music and pop standards, stemming from their days taking lessons together from an Italian guitar teacher in New Haven who spoke no English. While in the hospital, Al listened to home-made recordings of his guitar music. After Tinny returned home from the hospital the family gave him a new mandolin.
"We'll play for you. It'll only cost you a couple of thousand dollars," Al says as he shuffles off to his "guitar room," where amid the stack of tapes and posters on the wall hangs a hand-written list of his medications and what each does.
Al rhythmically strums chords as Tinny picks out the melody to the standard, "More." The duo has played at family gatherings for years and at weddings. Al says he wants to return to performing when he's fully recovered from his transplant surgery. "But I've got to get him to practice more," he says nodding his head toward his brother.
"Right now I feel pretty young and I'm doing very well," Tinny says. "I feel like a new person."Al says his goal, of course, is to feel even better than his brother. But, he adds, "I love my brother very much. We're very close and I'm sure we'll do just fine."
The Link Between The Hearts
While the twin heart transplants of Alfred and Anthony Melillo is
unique, the link between their transplants is not. Each of the heart transplant
patients at Yale-New Haven Hospital are linked to Gail Eddy, RN, the heart
transplant coordinator since 1988.
"When I first started with the program there were 10 patients who I took care of myself in the intensive care unit after they had transplants," Eddy said. "I coordinated transplants for the 112 who came after them."
The transplant coordinator is the liaison between the cardiologist and the surgeon and also serves as the patient's advocate. "I probably have the most contact with the patient," Eddy said. "I follow them through the whole evaluation process and while they wait for the organ to become available. I'm with them through the transplant, teach them about their medications. It's a close relationship, pretty intense. They look to me for answers."
Even with twin transplant patients, Eddy said that one aspect of transplant surgery is that each patient will have a different experience, depending on their condition at the time of surgery and their healing process. "Everyone seems to think that their transplant experience is the true and only way that it happened," she said. "I have to make them understand that it's going to be different. One of the biggest factors is how long a patient waits for a transplant. There are a lot of variables, such as their age. Somebody who goes through transplant in their 60s is going to have a different perspective than someone in their 40s."
Each year Eddy renews her relationship with her former patients at a "Celebration of Life" party. Her office contains pictures of her with former patients and their families. "When I haven't seen them for a while, they always make a point of telling what they're doing. I see them when they are so sick and then to see them looking so well is exciting, " she said. "Not long ago I saw a patient who had little kids at the time of her transplant. Now her kids were taller than me!"
Next story: Defining heart failure
Last revised: May 22, 2007 (dh)
