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After the Heart Transplant

After the Heart Transplant

In September 2009, 11-year-old Noah Thyberg of Clarksville, Md., underwent a heart transplant operation to manage the symptoms of cardiomyopathy. Knowing Hopkins’ rich history in heart surgery for children, including the “blue baby” operation in 1944—the first surgery to palliate congenital heart defects in infants—Noah’s family felt confident he was in good hands with pediatric cardiac surgeon Luca Vricella. Indeed, Noah’s surgery went well. But now he and his family had to face the myriad medical issues and needs that come with a new heart.

“The biggest concern is the body’s rejection of the new heart, but there are numerous other issues like infection, the development of coronary artery disease, and the psychological impact of receiving the heart of a child who has died,” says pediatric cardiologist Janet Scheel.“That means patient counseling, a lot of blood work, biopsies and medicines.”

Indeed, with the highest risk for complications occurring in the first few months after transplantation, Noah learned he would undergo blood tests twice weekly, chest X-ray monthly and echocardiography every two weeks. Levels of his anti-rejection drugs and immunoglobulins—infection-fighting antibodies—would be monitored regularly, and he’d undergo frequent biopsies—as many as ten the first year. He’d celebrate the first anniversary of his surgery, but that same day he’d undergo angiography so doctors could look for signs of coronary artery disease. The goal?

“To get the child to where he or she was before the transplant or onset of disease,” says Scheel, “so he can do all the things he used to do.”

That was the buy-in for Noah, an avid football player. But two weeks after returning home he returned to Hopkins Children’s for his first biopsy, which showed signs of rejection. Scheel prescribed high-dose corticosteroids intravenously, the mainstay treatment for graft rejection. Noah, Scheel said, could have the infusion therapy at nearby Howard County General Hospital, a member hospital of Johns Hopkins Medicine. The family jumped at the choice. Also, Noah’s follow-up visits could be at Scheel’s office in Columbia, one of several Johns Hopkins pediatric cardiology clinics throughout Maryland. This network of community clinics, Scheel notes, has been a benefit long acknowledged by families not anxious to make the drive into East Baltimore.

The following biopsy in October was more promising. The corticosteroids had done their job and could be tapered down. The risk of infection, however, was ever-present, which explained the number of Purell dispensers in the Thyberg home. Also, no visitors, and Noah would have to be home-schooled. Then there were the pills to contend with—11 tablets in the morning, a dozen at night, a strict regimen varying by signs of infection and biopsy results. Rejection meant more prednisone which meant potential side effects like indigestion and restlessness.

Finally, Noah went back to school, but not until December 1. His friends, he proudly notes, were “all pretty jealous” of his scar, but he still felt out of place. Part of him was trying to live the life of a normal 11-year-old; another part was the pediatric heart-transplant patient who had to give his full attention each day and week to medicines, tests and doctors’ visits. Noah, along with his parents and Scheel, had to be ever vigilant for clinical clues to infection and rejection. In ways, they were all engaged in a chess game with countless other serious threats: chronic pulmonary complications, hypertension, and metabolic abnormalities. Long term, many patients face allograft vasculopathy, for which the only answer is another heart transplant.

“You obviously worry about the child’s coronary arteries, but if we’re lucky he’ll get 20 to 25 years out of this heart,” says Scheel. “Everybody is different, and a lot depends on the patient’s support system, and Noah has a good one with his family. Everyone writes his or her own story.”

But Noah’s story, says his mom, Regina Thyberg, was not possible without Janet Scheel: “You can see how compassionate and knowledgeable she is. We couldn’t have made it this far without her and her team.”

Noah’s latest biopsy in October 2010 showed no signs of rejection.

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