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SPECIALTY: ADVANCED HEART FAILURE

Joseph

Auto Body Technician, 37, Somerville NJ

Joseph

Thirty-eight-year-old father of two Joseph Downs has spent much of his life playing soccer. From pick-up games at recess, to indoor adult leagues in his twenties, many of Joseph’s favorite memories took place on the soccer field. But while his unbridled enthusiasm for the sport may have been without equal, an undiagnosed condition silently held him back.

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I was always getting tired faster than the other kids. And as I was growing up, the problem was getting worse, and it was hard to keep up during the games. It got really bad when I was twenty-seven. One day, in this game, I felt really bad, and I got dizzy. I went to the ground and I couldn’t breathe. I thought I was going to die that day. So I said, ‘I’m not going to play anymore.’ I told the coach, ‘I can’t play. I don’t want to have a heart attack, or something.’
“I thought I was going to die that day. So I said, ‘I’m not going to play anymore.’”

As the years wore on, Joseph’s health deteriorated exponentially. Doctors at a New Jersey hospital diagnosed him with restrictive cardiomyopathy, a rare and untreatable congenital condition that causes the heart to pump poorly.

“The doctor told me ‘You need a heart transplant, like, right away.’”

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The doctor told me, ‘The condition that you have, it’s not treatable. We can’t do a surgery to fix it. The only thing that could correct that is a heart transplant. You need a heart transplant, like, right away.’ And he asked me, ‘You willing to get a heart transplant?’ And I said, ‘Well, if that’s the only option that I have to stay alive, of course. But l don’t want blood transfusions because of my religion’s beliefs.’

For a Jehovah’s Witness like Joseph, heart transplants are allowable, but the blood transfusions that go hand in hand with that procedure are not.

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A doctor in another hospital told me ‘Oh, that’s going to be hard. That’s not going to be possible in this hospital. We don’t have a bloodless program and it’s a risky surgery. I only know like two hospitals where they do that.’ One of them, it was in Chicago. And the other one in Houston.
“Another hospital told me, ‘We don’t have a bloodless program. I only know like two hospitals where they do that.’”

Joseph began to lose hope. Luckily, Dr. Ulrich Jorde of Montefiore heard about Joseph’s predicament and developed a plan to save his life, while remaining sensitive to his beliefs.

“Very few centers in the United States, or globally, do this. And Montefiore is one of those centers.”

Dr. Ulrich P. Jorde

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Heart transplantation without blood transfusion is rare. Usually the patient will need some blood. To perform a bloodless heart transplant, you need a very large, very experienced team. Very few centers in the United States, or globally, do this. And Montefiore is one of those centers.
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And he says, “Yeah, we can do it.” And I look at my wife and we look at each other. And she was crying already. I was so happy. Finally I’m going to be able to be with my kids again and play soccer. And obviously I was thankful to God, ‘cause, like, you know, I had the opportunity to get a heart. ‘Cause not all the people get a heart, you know? A lot of people don’t make it to the surgery. That’s like a second chance of life.
“I was so happy. Finally I’m going to be able to be with my kids again and play soccer.”

Three years post-surgery, Joseph is back in the game playing 90-minute matches without breaking a sweat, and spending quality time with his two active children in a way he was never able before.

“It’s a blessing to be able to be the father that I want to be.”

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Now that I have the new heart, I can play with them and keep up with them, with their level of energy. You know, I get them tired now [LAUGH]. Yeah, it’s a blessing to be able to be the father that I want to be. I have no words to say how grateful I am. I’m amazed of this hospital. I always tell people that have heart problems, ‘Go to Montefiore’. Go over there if you can. They treat you with love.

Meet Dr. Ulrich P. Jorde

Ulrich P. Jorde, MD

Section Head, Heart Failure,
Cardiac Transplantation and
Mechanical Circulatory Support