Stories about: cardiomyopathy

From the heart: The tale of a three-time transplant recipient

Tim, who had two heart transplants and a kidney transplant, with his family in a wooded area

Playing youth hockey and Little League in the spring of 1988, I started to become easily fatigued. I became very weak and could no longer run around. By May, a visit to my pediatrician resulted in a trip to the Boston Children’s Hospital Cardiology Clinic on Fegan 6 and the first of many cardiac catheterizations I would receive in my life.

The results of that first procedure were shared in my corner room across from the nurses’ station on 6 East (the cardiac step-down at the time): I would need a heart transplant for cardiomyopathy. It was Friday the 13th. I was 10 years old.

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Double the joy, following heart-lung transplant

Heart lung transplant recipient Nicole with her twin Isabella
Nicole, left, and her twin sister Isabella

Nearly six months following a heart-lung transplant, Nicole Kouri makes a triumphant return to school, alongside her twin sister Isabella. It was a pact she made with her Dad back in August of 2015, while her friends were lying by the pool, soaking up the final days of summer, and Nicole was lying in a bed at Boston Children’s Hospital.

14-year-old Nicole was born with a ventricular septal defect (VSD) — otherwise known as a hole in the heart — and pulmonary hypertension, a serious condition associated with VSD that makes it difficult for blood to flow properly through the lungs.

Being sick was Nicole’s “normal.”

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Three decades beat as one: 30 years of heart transplants

heart transplant 30 years Tina Medina and son
Tina Medina and her son Luke

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.

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A new normal: Life after pediatric heart transplant

"Danny strong:" Life after a heart transplant
Left to right: Tommie Deitz (uncle), Danny Deitz, Terry Deitz (father), Kayla Deitz (sister), Pam Deitz (aunt) and Trish Deitz (mother)

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.

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