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Hope Johnson

Hope JohnsonHow Reverend Hope Found the Help She Needed to Keep Helping Others

Reverend Hope Johnson had been feeling sick for a while but just didn’t want to give it her attention. She had too much to do: She was busy as a minister for a Unitarian Universalist congregation in Garden City, Long Island. Plus, she traveled around the world, advocating for a number of causes. When it was time for her annual physical, she mentioned to her doctor, Alfred Leong, M.D., that she had been experiencing a little shortness of breath, especially when she climbed the subway stairs.

Dr. Leong suggested that she see Suhail Raoof, M.D., chief of pulmonology and critical care medicine at New York Methodist Hospital. Dr. Raoof found that Rev. Johnson’s x-rays were consistent with sarcoidosis, a disease where tissues become inflamed with granulomas. Often these granulomas, or small growths, can cause permanent damage, resulting in scarring and breathing difficulties. Sometimes other organs such as the eyes, bones, skin, heart and central nervous system may be affected as well.

“Sarcoidosis can burn itself out, but sometimes it leaves scar tissue,” said Dr. Raoof. “However, in 30 percent of cases, the sarcoidosis progresses and becomes more pervasive. This was the case with Rev. Johnson—a CT scan showed small nodules in the lungs, suggesting that the sarcoidosis was still active.”

Although it is rare, sometimes sarcoidosis can also involve the heart. Any scar tissue that builds up in the heart as a result of the disease can negatively affect the way in which electricity is delivered throughout the heart, and may result in irregular heartbeats, which could be sudden and fatal. Because Rev. Johnson travels so extensively, Dr. Raoof didn’t want her flying around the world with such a risky condition.

To see if the sarcoidosis had indeed spread to her heart, John Heitner, M.D., director of non-invasive imaging in the department of cardiology, evaluated the condition of her heart using a cardiac MRI, the only imaging modality that reveals the composition of the heart muscle. “Her heart showed the classic features of sarcoidosis: granulomas/fi brosis in the superficial and midmuscular tissue of the heart,” said Dr. Heitner.

“The replacement of Rev. Johnson’s normal heart muscle with the fibrosis leaves her open to complications. We are currently further investigating her risk for complications by having an electrical study performed on her heart. She may very well end up needing a defibrillator. “This was a great diagnosis by Dr. Raoof; he may very well have saved her life,” says Dr. Heitner.

Rev. Johnson says that she feels “blessed” to have met Dr. Raoof and Dr. Heitner, and feels totally safe in their hands. “They know me to be a worrier, so they go the extra mile to make sure that I feel comfortable.” In fact, she was admitted for an unrelated surgery, and both doctors were in the operating room to makes sure there were no complications.

Reflecting on her experience at NYM, Rev. Johnson says, “I began to study and learn a whole new vocabulary about my condition. While seeing Dr. Raoof and Dr. Heitner, I began to really understand about the juxtapositions and interconnectivity between the different fields of medicine at New York Methodist, and saw that the fields worked together towards a common goal, with an integration of values.”

Read more about Reverend Hope Johnson in the 2009 NYM Annual Report.