Friday, July 6, 2018

Patient Story: Courtney Can Now Get Back to the Life She Loves

Courtney

Condition: Chronic thromboembolic pulmonary hypertension (CTEPH), a rare disease where chronic blood clots turn into scar tissue and causes high blood pressure in the lungs (pulmonary hypertension)

Procedure: Pulmonary thromboendarterectomy (PTE) surgery, a complex open heart surgery

Hometown: Kingston, New York

Courtney loves to travel, write and learn. But all her favorite activities were halted when she suddenly found herself with a misunderstood heart and pulmonary condition. Courtney had always been a healthy person, but with several cases of bronchitis that never went away, a terrible cough and increasing shortness of breath, she knew that something was very wrong.

She then started to experience chest pains and tightness, pain in her left arm and lightheadedness. Her primary care doctor performed an electrocardiogram (EKG), which looks at the electrical activity in the heart, and noticed that the right side of her heart was enlarged. She was sent to the emergency room (ER) and blood work revealed that she was in the beginning stages of heart failure, at the young age of 37.

After numerous doctor appointments, trips to the ER, hospital stays and various tests, her condition worsened. A doctor in her home state of New York, seemed puzzled by all her test results. She was in the intensive care unit (ICU) for three days and grew increasingly frustrated and scared because no one knew what to do with her condition.

Finally, she saw a pulmonologist who explained that her condition was called chronic thromboembolic pulmonary hypertension (CTEPH) and that clots had solidified and were causing her lungs and heart dangerous strain. The doctor mentioned that she would need a very complicated open heart surgery, and that they didn’t do it at that hospital. Her pulmonologist gave her three options for surgery and highly recommended Massachusetts General Hospital because he was confident in the care she would receive.

“I knew that Mass General had a reputation as one of the world’s leading hospitals and I had a sense of relief that I’d be in experienced, expert hands. Finally, I felt like we were getting somewhere with my treatment,” said Courtney.

Courtney’s multidisciplinary care team consisted of physicians, surgeons and nurses from various departments at Mass General. Her team consisted of Cameron Wright, MD, Associate Chief of the Division of Thoracic Surgery; Gus Vlahakes, MD in Cardiac Surgery; Richard Channick, MD, Josanna Rodriguez-Lopez, MD, and Alison Witkin, MD, from Pulmonary and Critical Care Medicine.

“All of my doctors and surgeons were warm, friendly and really took the time to answer all my questions," Courtney said. "I finally felt that I was getting the care I needed and that they were taking the right course of action. Dr. Wright made a big impression on me and although I was scared, I knew I was in capable hands and trust him with my life. I also received such genuinely compassionate, professional and attentive care from the dedicated nurses and aides.”

Courtney woke up about 24 hours after her seven-hour surgery was completed. She was in the hospital for 12 days after surgery, including the ICU. The surgery saved Courtney’s life. Recovery wasn't easy and she had to go home with an IV pump with medication that she had to wear 24 hours a day, seven days a week. Visiting nurses would also come and check on her.

Today she's healthy with only mild, residual pulmonary hypertension. She still gets shortness of breath with stairs, or trying to walk fast and talk at the same time. However, she no longer needs to rest four or five times on the way to her desk in the morning. Through medications and continued doctors' visits, she’s learned to listen to her body.

“There are so many things I still want to do—get back to my writing, keep traveling and learning," Courtney said. "and I have another shot at accomplishing all of that. After a rough road, I finally got to the right place, which is Mass General, at the right time.” 

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