YOUR HEALTH: One boy’s recovery from a rare heart disease

Loeffer’s Syndrome is a serious, but rare respiratory infection that can take doctors months to diagnose.

PALO ALTO, California – As a budding chef, blog writer, and full-time student, Justin Wang has his hands full.

But he says he's just making up for lost time.

The 16-year old is so into cooking that he's even written a cookbook, a big deal considering that up until a few months ago he was on a G-I feeding tube.

"My health growing up wasn't the best."

His mother remembered his first few months of life.

"When he was barely two-years-old, we felt something terribly wrong with him," said Yang Wei.

Rashes and a fever were a few of his symptoms, but it was a blood test that led doctors to a diagnosis of Loeffler's Syndrome.

Loeffler's syndrome is a form of eosinophilic pulmonary disease characterized by absent or mild respiratory symptoms (most often dry cough), fleeting migratory pulmonary opacities, and peripheral blood eosinophilia.

"Loeffler's is super rare and it's a blood disorder when you have too much oesenphile which is a type of white blood cell," explained Justin.

"One of the many problems with having this disease is that these cells can build up in the heart and cause the heart not to function well," said Dr. Seth Hollander, Pediatric Cardiologist Medical Director at Lucile Packard Children's Hospital.

A chemotherapy drug was able to slow down the disease, but not before his heart started failing.

At age six, Justin had the first of two open heart surgeries.

"But we knew from a pretty early age that at some point he was going to have to have a heart transplant," said Dr. Hollander.

Justin was really lucky.   He was only on the heart transplant list for 17 days before doctors found a donor.

"Whether or not his new heart will suffer from the effects of the Loeffler's syndrome - we'll just have to see over time."    - Dr. Seth Hollander

Justin has rebounded.

"I still have Loeffler's Syndrome to this date, but it's being very controlled. And it's going to be alright from now on."

Besides cooking, Justin is also now focused on educating others about Loeffler's Syndrome and encouraging organ donation with his blog "My Heart Transplant Journal".

If this story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Jim Mertens at jim.mertens@wqad.com or Marjorie Bekaert Thomas at mthomas@ivanhoe.com.