Loeffler’s Syndrome: Justin’s Journey

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STANFORD, Calif. (Ivanhoe Newswire) — Loeffler’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.

Chow Mein with extra veggies is Justin Wang’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 GI feeding tube.

Wang said, “My health growing up wasn’t the best.”

Wang’s mother, Yang Wei, told Ivanhoe, “When he was barely two-years-old, we felt something was terribly wrong with him.”

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.

Wang said, “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.”

Seth Hollander, MD, a Pediatric Cardiologist, Medical Director, Pediatric Heart Transplantation at Lucile Packard Children’s Hospital, Stanford 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.”

(Read Full Interview)

A chemotherapy drug was able to slow down the disease, but not before his heart started failing. At age six, Wang had the first of two open heart surgeries.

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

That reality came last just year.

Wang said, “My health was decreasing at an exponential rate.”

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

Wei shared, “His life is a miracle”

Dr. Hollander said, “Out of the over 400 transplants we’ve done here, he is the only child with Loeffler’s syndrome.”

Wang said, “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.”

Loeffler’s syndrome can affect other organs besides the heart, including the lungs and liver. Wang is now focused on educating others about it and encouraging organ donation with his blog –  https://myhearttransplantjournal.com/

Contributors to this news report include: Jennifer Winter, Field Producer; Cyndy McGrath, Supervising Producer; Rusty Reed, Videographer; Roque Correa, Editor.

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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)

FOR MORE INFORMATION ON THIS REPORT, PLEASE CONTACT:

Samantha Beal, Media Relations, Lucile Packard Children’s Hospital Stanford

650.498.7056

SBeal@stanfordchildrens.org

If this story or any other Ivanhoe story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Marjorie Bekaert Thomas at mthomas@ivanhoe.com

Doctor Q and A

Read the entire Doctor Q&A for Seth Hollander, MD, Pediatric Cardiologist, Medical Director, Pediatric Heart Transplantation

Read the entire Q&A