Loeffler's syndrome: Justin's journey - WNDU-TV

Loeffler's syndrome: Justin's journey - WNDU-TV


Loeffler's syndrome: Justin's journey - WNDU-TV

Posted: 20 Nov 2019 02:10 PM PST

Loeffer's syndrome is a serious but rare respiratory infection that can take doctors months to diagnose. In the most severe cases, that critical time can lead to organ damage.

This is Justin Wang's journey and how he was able to beat the odds.

Chow mein with extra veggies is Justin's signature dish. 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 gastrointestinal feeding tube.

"My health growing up wasn't the best," Justin said.

"When he was barely 2 years old, we felt something terribly wrong with him," said Yang Wei, Justin's mother.

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

"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," pediatric cardiologist Dr. Seth Hollander said.

A chemotherapy drug was able to slow down the disease, but not before his heart started failing. At age 6, 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," Hollander said.

That reality came last year.

"My health was decreasing at an exponential rate," Justin recalled.

"Justin was really lucky. He was only on the heart transplant list for 17 days before we found a donor," Hollander said.

"His life is a miracle," Wei said.

"Out of the over 400 transplants we've done here, he is the only child with Loeffler syndrome," Hollander said

"I still have Loeffler's syndrome to this date, but it's being very controlled. And it's going to be all right from now on," Justin said.

Loeffler's syndrome can affect other organs beside the heart, including the lungs and liver.

Justin is now focused on educating others about it and encouraging organ donation with his blog.

MEDICAL BREAKTHROUGHS
RESEARCH SUMMARY
TOPIC: LOEFFLER'S SYNDROME: JUSTIN'S JOURNEY
REPORT: MB #4655

BACKGROUND: 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. Parasitic infections, especially ascariasis, may be the cause, but an identifiable etiologic agent is not found in up to one third of patients. The diagnosis of Loeffler's syndrome is based on characteristic and often transient respiratory symptoms, chest x-ray findings, and peripheral blood eosinophilia. It requires the exclusion of other types of eosinophilic lung disease. For example, acute eosinophilic pneumonia is a distinct entity with acute onset, severe hypoxemia, and typically a lack of increased blood eosinophils at the onset of disease. (Source: https://www.merckmanuals.com/professional/pulmonary-disorders/interstitial-lung-diseases/l%C3%B6ffler-syndrome)

SYMPTOMS: Seth Hollander, MD, a Pediatric Cardiologist, Medical Director, Pediatric Heart Transplantation at Lucile Packard Children's Hospital Stanford talked about the symptoms, "In Justin's case, there was a noticeable weakening of his heart that we were able to see on a heart ultrasound called an echocardiogram. So it was very clear early on that his heart was suffering as a result of this disease. And when your heart's not functioning well, we call that heart failure. When you have heart failure, a number of things can happen. You can tire easily. You can breathe fast. You can have trouble eating and have trouble gaining weight. These would be typical symptoms of heart failure and things that Justin had to fight basically throughout his childhood." (Source: Seth Hollander, MD)

MOVING FORWARD: Dr. Hollander said, "Loeffler's is a lifelong condition, and so his body will continue to produce these abnormal cells and he will continue to require medications to try to suppress his body's natural tendency to produce these cells. In addition to his heart transplant we are continuing him on his medical therapies so as to best prevent this happening in his new heart. Whether or not his new heart will suffer from the effects of the Loeffler's syndrome - we'll just have to see over time." Justin Wang says that he is still taking a chemotherapy drug for his Loeffler's syndrome. Although he takes heart transplant medications, he says he is healthy and should not be at risk for any other health problems as he ages. (Source: Seth Hollander, MD & Justin Wang)

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