Tina Medina was not a sickly child, yet she grew up knowing something was physically wrong.
She had difficulty keeping up with the other kids in her sixth-grade class and couldn’t run without becoming breathless. Local physicians near her home in Moriah, New York, shrugged it off as asthma — until Tina’s heart stopped twice during a routine appendectomy. “I was told I had a severe heart condition and needed to see a cardiologist right away,” she says.
At 15, Tina was diagnosed with restrictive cardiomyopathy, a rare type of cardiomyopathy that causes the heart muscle to become stiff, making it difficult for the ventricles of the heart to properly fill with blood. Three years following her diagnosis, now a college freshman on her way to Syracuse University, she became severely ill with multiple episodes of congestive heart failure.
“The doctors I was seeing in Burlington referred me to Boston Children’s Hospital,” she says. “It was time to look at getting a heart transplant.”
Tina was listed for six months. She was in the cardiac intensive care unit at the University of Vermont Hospital in Burlington when she learned a heart had become available. “I had no perspective that this was a danger, or that this was a huge deal. I looked at it as, I am finally going to be able to run, be able to breathe and not be sick.”
Boston Children’s nurse practitioner, Patricia O’Brien, CPNP, vividly remembers standing in her kitchen, telephone in hand, scrambling to arrange a flight from Burlington to Boston. “We had a plan in place but it fell through, so we were desperately trying to figure out a way to get her here, and we did.”
Tina’s surgery was performed on Aug. 27, 1992. She was the 22nd heart-transplant patient at Boston Children’s, which performed its first cardiac transplant 30 years ago. …
In September 2015, Simsbury, Connecticut, high school junior Danny Deitz had a heart transplant.
After a few months of rest and recovery, he’s now back at school, returned to the gym and is spending quality time with his friends. Danny shares what he’s learned throughout his experience with cardiomyopathy and heart failure.
All in all, life’s been really great. I went back to school four weeks ago. Getting back into the work was a bit tough at first — I had been doing one hour of tutoring a day, and now I’m in school six hours a day! But I’m getting used to it. I’m basically doing everything I used to, and it’s nice to be back in that routine.
It got kind of boring sitting at home all the time while my friends were at school, but I had friends over on the weekends. And it made me appreciate the little things more. Being at home with family — that’s really important. …
Over the past few decades, more and more children with congenital heart defects have been receiving life-saving surgery soon after birth. As surgical techniques improve, some children who would have died within the first few weeks of life are able to survive — but many still have residual heart failure. Transplant is often the optimal therapy for such patients, but the number of hearts available to transplant has not changed much over the last several years.
“The number of patients listed for transplant is much greater than the number of donor hearts,” says Dr. Elizabeth Blume, director of the Heart Center’s Heart Failure program. “Due to this limitation, we’ve dedicated an entire service to optimizing care for children living with heart failure.”
In recent years, the Heart Failure team has made significant strides in slowing the progress of heart failure in children. In some cases, disease progression has been slowed enough for the patient to be taken off of the heart transplant list for being “too well.”
Each Monday for the next four weeks, Thriving is highlighting a very special Heart Center patient who was once listed for transplant, but was removed from the list thanks to successful medical management of her heart disease.
Kenny Laferriere has been working for the New England Organ Bank for eight years, and in January 2016, he will celebrate the 15th anniversary of his heart transplant at Boston Children’s Hospital.
Kenny says he was drawn to a career that would allow him to give back. “I do a lot of talks at the Organ Bank for new hire orientation to give people some perspective on why we’re here. I’m living proof transplantation works; it saved my life and allowed me to be with my family. Eventually, it allowed me to create new life and start a family of my own.” (Kenny has a four-year-old son, Kameron, and another son on the way).
Kenny emphasizes the ripple effect of every transplant; it doesn’t save just one life — it touches many others. …